Interesante artículo publicado en http://www.swissinfo.ch/ acerca de la discriminación en la prestación de seguros de salud de personas con VIH.
Se repoduce la parte del artículo relativa a este aspecto,y que debe hacer reflexionar a la industria del seguro si se producen situaciones similares de discriminación en el proceso de admisión y/o de prestación.
José Miguel Rodríguez-Pardo del Castillo.
.............................
Por Christian Raaflaub, swissinfo.ch
El diagnóstico del VIH ya no significa hoy una sentencia de muerte. Aproximadamente el 70% de los pacientes pueden seguir trabajando, la mayoría con un puesto a tiempo completo.
Sin embargo, la discriminación en el ámbito laboral es una realidad, como denuncia la organización ‘Ayuda Suiza contra el Sida’.
Michel Baudois tiene 49 años y es seropositivo desde 1996.
Sin ley contra la discriminación
Un problema que denuncia ‘Ayuda Suiza contra el Sida’ es que desde 2004 Suiza dispone de una ley de igualdad de oportunidades para las personas con discapacidad que se aplica únicamente en la administración federal.
Consecuencia de ello es que corresponde al empleado demostrar con pruebas que se le ha discriminado. Por esta razón, ‘Ayuda Suiza contra el Sida’ y otras organizaciones luchan por que se promulgue una ley en la materia.
La falta de cobertura de seguro
Otro problema reside en que en el caso de los seropositivos las aseguradoras no contemplan un seguro que compense las pérdidas salariales en caso de enfermedad. Si se trata de una empresa sin convenio colectivo de trabajo, estas personas no están suficientemente cubiertas en caso de baja. Baudois, experto en seguros, entiende que “las aseguradoras no aceptan asegurar una enfermedad que el cliente ya padece en el momento de contraer una prima”.
No obstante, “lo que yo critico es que el sector no tiene suficientemente en cuenta los avances médicos”. Baudois recomienda a quienes se cambien de trabajo que conserven el seguro de compensación salarial del antiguo empleador a título individual. “Es mucho más caro, pero de esa manera la persona no tiene que someterse a un nuevo cuestionario sobre su estado de salud”.
Mostrando entradas con la etiqueta A-BIOÉTICA Y SEGURO DE ASISTENCIA SANITARIA. Mostrar todas las entradas
Mostrando entradas con la etiqueta A-BIOÉTICA Y SEGURO DE ASISTENCIA SANITARIA. Mostrar todas las entradas
domingo, 4 de diciembre de 2011
martes, 1 de marzo de 2011
Legislation, insurance urged for rare diseases.
SHANGHAI Medical Association today set up a rare disease diagnosis and treatment department to promote related legislation, research and insurance coverage.Rare diseases are diseases that affect a small percentage of the population. In China, the incidence is 0.01 percent.There are about 5,000 to 6,000 rare diseases, or 10 percent of all human diseases, experts said today, the World Rare Disease Day.Most rare diseases are genetic and half of rare diseases appear early in life with many children showing symptoms upon delivery or within 12 months. It is urgent to set up a system to introduce best medicines and cover the medical bills of rare disease patients so they can afford good medicines and have a good quality of life, said Dr Li Dingguo, director of the rare disease department. All medicines treating rare diseases are expensive. According to the experts, the local government has made a plan to establish a foundation to cover the hospital expenses of 12 preventable and treatable rare diseases for local patients.Genetic tests will also be conducted on couples and on fetus to provide early intervention and treatment to prevent children born with rare diseases.
Lunes, 28 Febrero 2011
http://www.noticias24h.eu/
Lunes, 28 Febrero 2011
http://www.noticias24h.eu/
domingo, 16 de enero de 2011
Encuesta revela aumento de la preocupación de los estadounidenses sobre la privacidad de la información genética
Un informe recién publicado por Cogent Research, en colaboración con CAHG, revela que los estadounidenses están más preocupados que nunca por la privacidad de su información genética. Además, esta preocupación es cada vez más la inhibición de la probabilidad de que se considere la posibilidad de una prueba de diagnóstico molecular. Estos y otros hallazgos se exploran con más detalle en el día número 5 de la Genómica de Cogent, Actitudes y estudio de tendencias (CGAT ™ 2010).
"Al final del día, no es que los estadounidenses no tienen fe en GINA, ellos no han escuchado lo suficiente al respecto"
El estudio CGAT ™, basado en una encuesta representativa nacional de 1,000 estadounidenses, revela que la proporción de estadounidenses que están preocupados acerca de cómo su información genética se almacena y quién tiene acceso a esa información, ha subido de 65% en 2006 a un máximo histórico de 71% en 2010. Cuando se le preguntó si sus preocupaciones puede evitar que tengan algún tipo de prueba genética en el futuro, la cifra aumentó de 30% en 2006 a 37% hoy. "En general, vemos indicios de entusiasmo de los estadounidenses en genómica de amortiguación", dijo el Investigador Principal de Cogent Christy Blanca. "Esta es una de las principales preocupaciones, ya que la tendencia en años anteriores se había estado moviendo en la dirección opuesta."
Cuando se le preguntó acerca de las entidades específicas que se trate puede acceder a su información genética personal sin autorización, casi tres cuartas partes de los estadounidenses (71%) citan problemas con las compañías de seguros de salud. De hecho, más de la mitad de los estadounidenses (53%) dicen que están "extremadamente" preocupado por esa posibilidad. El estudio CGAT ™ también revela un alto nivel de escepticismo para una variedad de otras entidades, incluyendo compañías de seguros de vida, el gobierno y los empleadores.
Del mismo modo, los resultados de un estudio histórico sobre los médicos "la conciencia, las actitudes y la adopción de la medicina genómica, llevada a cabo por CAHG reveló que el PCP, los cardiólogos y oncólogos consumidores comparten las preocupaciones de privacidad. Setenta y nueve por ciento (79%) de los médicos declararon que estaban preocupados por posible uso indebido de la información genética por las autoridades como la salud y las compañías de seguros de vida, así como los empleadores.
A pesar de que el Congreso aprobó la Ley de No Discriminación por Información Genética (GINA), que fue firmada como ley en mayo de 2008, CGAT ™ encontró que menos de uno de cada cinco estadounidenses (16%) son conscientes de las leyes que protegen la privacidad de sus la información genética. Tres de cada cuatro estadounidenses (77%) dice que está seguro de si están protegidos. Un 8% adicional afirmar que no existe tal protección. Del mismo modo, el 81% de los médicos en el estudio CAHG dijeron que no estaban familiarizados con la GINA. "Al final del día, no es que los estadounidenses no tienen fe en GINA, ellos no han escuchado lo suficiente al respecto", añadió la Sra. Blanca.
En una nota positiva, casi la mitad (47%) de todos los estadounidenses dicen que estarían interesados en el uso de su información genética con el fin de comprender y optimizar su salud, y dos tercios (63%) dicen que estarían más interesados en hacer por lo que si se les aseguró que, por ley, nadie puede acceder a su información del ADN sin su consentimiento.
"La buena noticia es que-como los resultados de estos dos importantes estudios demuestran el aumento de la preocupación en torno a la privacidad no se ha reducido drásticamente el nivel de los consumidores y los médicos generales de interés en la genómica y la medicina basada en la genómica", dijo Scott Cotherman, consejero delegado de CAHG. "Educar a los médicos en la GINA presenta una gran oportunidad para las empresas de diagnóstico farmacéutica, biotecnología y moleculares para demostrar su liderazgo y proporcionar un valor a uno de sus clientes más importantes como la medicina genómica basada sigue para pasar de promesa a la práctica. Hasta la fecha, nadie ha dio un paso adelante para tomar una posición de liderazgo significativo en este campo emergente y CAHG, nuestros socios, y Cogent investigación están dispuestos a ayudar a que esto sea una realidad para el futuro las entidades en caso de que deseen seguir ese curso. "
Fuente de Investigación y Cogent CAHG
http://www.news-medical.net/news/20110111/1508/Spanish.aspx?page=2
"Al final del día, no es que los estadounidenses no tienen fe en GINA, ellos no han escuchado lo suficiente al respecto"
El estudio CGAT ™, basado en una encuesta representativa nacional de 1,000 estadounidenses, revela que la proporción de estadounidenses que están preocupados acerca de cómo su información genética se almacena y quién tiene acceso a esa información, ha subido de 65% en 2006 a un máximo histórico de 71% en 2010. Cuando se le preguntó si sus preocupaciones puede evitar que tengan algún tipo de prueba genética en el futuro, la cifra aumentó de 30% en 2006 a 37% hoy. "En general, vemos indicios de entusiasmo de los estadounidenses en genómica de amortiguación", dijo el Investigador Principal de Cogent Christy Blanca. "Esta es una de las principales preocupaciones, ya que la tendencia en años anteriores se había estado moviendo en la dirección opuesta."
Cuando se le preguntó acerca de las entidades específicas que se trate puede acceder a su información genética personal sin autorización, casi tres cuartas partes de los estadounidenses (71%) citan problemas con las compañías de seguros de salud. De hecho, más de la mitad de los estadounidenses (53%) dicen que están "extremadamente" preocupado por esa posibilidad. El estudio CGAT ™ también revela un alto nivel de escepticismo para una variedad de otras entidades, incluyendo compañías de seguros de vida, el gobierno y los empleadores.
Del mismo modo, los resultados de un estudio histórico sobre los médicos "la conciencia, las actitudes y la adopción de la medicina genómica, llevada a cabo por CAHG reveló que el PCP, los cardiólogos y oncólogos consumidores comparten las preocupaciones de privacidad. Setenta y nueve por ciento (79%) de los médicos declararon que estaban preocupados por posible uso indebido de la información genética por las autoridades como la salud y las compañías de seguros de vida, así como los empleadores.
A pesar de que el Congreso aprobó la Ley de No Discriminación por Información Genética (GINA), que fue firmada como ley en mayo de 2008, CGAT ™ encontró que menos de uno de cada cinco estadounidenses (16%) son conscientes de las leyes que protegen la privacidad de sus la información genética. Tres de cada cuatro estadounidenses (77%) dice que está seguro de si están protegidos. Un 8% adicional afirmar que no existe tal protección. Del mismo modo, el 81% de los médicos en el estudio CAHG dijeron que no estaban familiarizados con la GINA. "Al final del día, no es que los estadounidenses no tienen fe en GINA, ellos no han escuchado lo suficiente al respecto", añadió la Sra. Blanca.
En una nota positiva, casi la mitad (47%) de todos los estadounidenses dicen que estarían interesados en el uso de su información genética con el fin de comprender y optimizar su salud, y dos tercios (63%) dicen que estarían más interesados en hacer por lo que si se les aseguró que, por ley, nadie puede acceder a su información del ADN sin su consentimiento.
"La buena noticia es que-como los resultados de estos dos importantes estudios demuestran el aumento de la preocupación en torno a la privacidad no se ha reducido drásticamente el nivel de los consumidores y los médicos generales de interés en la genómica y la medicina basada en la genómica", dijo Scott Cotherman, consejero delegado de CAHG. "Educar a los médicos en la GINA presenta una gran oportunidad para las empresas de diagnóstico farmacéutica, biotecnología y moleculares para demostrar su liderazgo y proporcionar un valor a uno de sus clientes más importantes como la medicina genómica basada sigue para pasar de promesa a la práctica. Hasta la fecha, nadie ha dio un paso adelante para tomar una posición de liderazgo significativo en este campo emergente y CAHG, nuestros socios, y Cogent investigación están dispuestos a ayudar a que esto sea una realidad para el futuro las entidades en caso de que deseen seguir ese curso. "
Fuente de Investigación y Cogent CAHG
http://www.news-medical.net/news/20110111/1508/Spanish.aspx?page=2
martes, 9 de noviembre de 2010
La reforma de Salud de Obama y la no discriminación en el seguro de salud
Uno de los elementos centrales de discusión en la reforma del sistema sanitario en EEUU es el acceso universal de los norteamericanos a las coberturas de Medicare,los republicanos quieren que las compañías de seguros puedan volver a negar la cobertura a personas con condiciones pre-existentes, y que el precio del seguro de las mujeres sea dos veces más por la misma cobertura que los hombres, y dejar a adultos mayores de nuevo sin cobertura de Medicare.
El proceso de admisión de riesgos de la industria privada del seguro de salud se esta convirtiendo en el elemento central de discusión de la reforma.
En las próximas semanas veremos como termina la discusión despues las elecciones recientes en EEUUU.
José Miguel Rodriguez-Pardo del Castillo.
El proceso de admisión de riesgos de la industria privada del seguro de salud se esta convirtiendo en el elemento central de discusión de la reforma.
En las próximas semanas veremos como termina la discusión despues las elecciones recientes en EEUUU.
José Miguel Rodriguez-Pardo del Castillo.
viernes, 29 de octubre de 2010
José Miguel Rodríguez-Pardo habla del envejecimiento
LOS DECANOS.CADENA COPE.Dr ESTEBAN PEREZ ALMEIDA
Programa del miércoles, 27.10.10
http://www.cope.es/los-decanos/audio-programa-del-miercoles-271010-101552
Programa del miércoles, 27.10.10
http://www.cope.es/los-decanos/audio-programa-del-miercoles-271010-101552
domingo, 27 de septiembre de 2009
Bioethics and Health Insurance
Posted: Aug 31, 2009
J. Hughes
Bioethicists might prefer to be seen as wise non-partisan sages, dispensing timeless wisdom. But now, albeit with great reluctance, they are forced to take an active role in the increasingly divided biopolitical landscape.
The Bush administration’s appointment of Leon Kass’s President’s Council on Bioethics shattered American bioethicists’ belief that they were above politics. The polarization of liberal and conservative bioethicists in the wake of Kass’s ascendancy revealed bioethics to be proto-biopolitics, a temporary academic sherry hour where colleagues could chat about cloning and the definition of death until they were drowned out by the clash of biopolitical partisans in the streets.
With the election of President Obama, championed as a return of Enlightenment values, I’m sure some bioethicists believed the partisan polarization could be set aside, forgotten as an aberration of the Bush years. Now the hard Right’s disinformation campaigns about “death panels” and attacks on bioethicists in the health reform debate have made clear that the majority of progressive bioethicists have to take a political stand for our Enlightenment values of freedom, equality and solidarity against the forces of reaction and unreason.
First we saw the demagoguing of the provision in the House reform bill that would have allowed doctors to be reimbursed for one conversation every five years with their patients about end of life planning and advance directives. The conversations would be, of course, voluntary, and the patients could choose an advance directive that insisted on a full court press till the bitter end. But the Fox News heads made this out to be a policy requiring all patients to sign up for an early death. Then they added the charge that the Veteran Affair’s booklet on end-of-life planning document, “Your Life, Your Choices” pushed veterans to end their lives, when in fact, like all advance directives materials, it simply asked whether the person would want to forgo life-sustaining treatment in a series of scenarios.
Next we saw the conspiracy theories about the bioethicist Ezekiel Emanuel being part of a grand plot to promote euthanasia and draconian rationing as part of the alleged socialized medical system the Democrats were creating. The Democrats aren’t, sadly, proposing a socialized medical system, or any draconian rationing, and Ezekiel Emanuel is not a proponent of draconian rationing schemes, simply common-sense utilitarian priority-setting. But a paragraph or two out of thirty years of voluminous writings on bioethics, taken out of context by the Republican noise machine and then placed in juxtaposition with disinformation about the Soylent Green suicide factories supposedly being run by the Brits and Canadians, and there was at least one frothing tea-bagger at every healthcare meeting quoting from the new Protocols of the Elders of Zeke.
Then, there was the charge that the Democrat’s health reforms would create “death panels,” a lie fabricated by the Republican propagandist Betsy McCaughey. One would think that Democrats would have been able to immediately turn this attack around, since it is in fact private managed care that runs death panels, by denying coverage to the sick, then denying services for the people they cover, and then dropping people from coverage when they get sick. But since half of the Democrats have been hopelessly compromised by cozy relationships with the health insurance industry and medical industrial complex these arguments rarely occur to them.
Fortunately, as is often (too often) the case, it took Jon Stewart’s brilliant cross-examination of McCaughey on The Daily Show to deflate the balloon of “death panel” hot air. Unfortunately, polls show the damage had already been done to a credulous public’s growing unease with the health care reform process, especially among seniors.
With the mounting campaign of hate being directed at bioethicists, and core concepts of bioethical practice that have been established for decades, the liberal bioethicists were finally stirred to response.
First came the statement from the Association of Bioethics Program Directors:
Three Myths About the Ethics of Health Care Reform
The American Bioethics Program Directors represents the leadership of 60 academic bioethics programs across North America. At this critical juncture in the national debate about health care reform in the United States, our membership wishes to send a clear message about some myths that challenge the ethics of reform proposals.
Myth #1: Health care reform will mean giving up control of my own health care decisions.
Fact: The field of bioethics has long championed the rights of individual patients to make their own health care decisions in consultation with their physicians. If we thought the major proposals being considered posed a serious threat to these rights, we would be the first to speak out. But that is NOT the case. The right of individuals to make decisions about their health care is engrained in the ethics of American medical practice and that won’t change under any of the approaches to health care reform currently under discussion.
Myth #2: Health care reform will control health care costs by depriving patients of important, but costly, medical treatments.
Fact: This is also untrue. If anything, the provisions in current health care proposals will increase the likelihood that patients will get quality medical care and decrease the likelihood of medical errors that kill thousands of patients every year. There are unethical ways to control costs, including refusing to treat the uninsured or those who have insurance but cannot afford the exorbitant out of pocket costs of expensive treatments-that is the status quo. Health care reform offers a more coherent approach to delivery of health care that aims to control costs while maintaining the quality Americans have come to expect and deserve.
Myth #3: Health care reform will deny older Americans medical treatments at the end of life.
Fact: This may be the most pernicious myth of all. In proposed approaches to reform, there is a provision that supports the rights of individuals and their families to make decisions at the end of life by institutionalizing a process for patients and families to express their desires to their physicians and other health care professionals. This right is part of the culture of American medicine, defended since the beginnings of the field of bioethics, and supported by case law going back over 50 years.
Some opponents of health care reform have twisted both the intent and effect of this provision, making unsupported claims about how it will push older Americans into hospice against their will, and even euthanasia. Nothing could be further from the truth. Straightforward conversations about end of life are critical to quality health care, with decisions continuing to be made by individuals and their families in ways that are consistent with their values and in consultation with their physicians.
Here is the real bottom line: The current state of health care is unethical. It is neither just nor fair. There is no morally defensible reason why some Americans get excellent medical care at costs they can afford and other Americans lose their homes or go into bankruptcy attempting to secure treatment for a seriously ill loved one. The current proposals being debated in Congress all go a long way towards making health care in America more just. At the same time, there is nothing in the current proposals that threatens a patient’s right to choose, a critical feature of an ethically acceptable health care system.
We commend efforts to reform the health care delivery system with commitments to cover all Americans while protecting choice and maintaining the high quality care that our fellow citizens deserve. We stand ready to aid however we can in this vital effort.
This statement put pressure on the American Society for Bioethics and Humanities, which is the largest association of bioethicists in the world. They have long had bitter internal divisions between “progressives” and “professionals” over the ASBH should take stands on ethical and political issues of the day.
With the careers and lives of bioethicists being threatened, the balance tipped and they finally issued a statement on August 25th:
Response to the Recent Attacks on Bioethicists
In recent days we have witnessed unfair attacks in print and on the Internet on prominent bioethicists such as Ezekiel Emanuel and Robert Pearlman. (cf. B. McCaughey, “Deadly Doctors” New York Post, August 17, 2009; J. Towey, “The Death Book for Veterans,” Wall Street Journal, August 18, 2009). In each case, these ethicists have been incorrectly portrayed as seeking to disenfranchise patients from the decision making process and thereby hasten their deaths.
Mischaracterizing the work of any of the thoughtful people who have tried to contribute to this debate, attributing to them nightmarish views for purely political purposes, not only perpetrates a heinous form of intellectual violence against those individuals, it denigrates bioethics as a profession, and more importantly, it does a profound disservice to the society that we seek to serve.
In our complex health-care system, there has proven to be no single method to guarantee that the wishes of the patient and his or her family will be respected when they choose to focus on the comfort of the patient rather than pursue other avenues of treatment.
As a result, bioethicists have often participated in the development of legislation, regulatory and accreditation standards, institutional policies, living wills, values histories, and a variety of other means to record the wishes of patients and to provide impetus to respect those wishes. Similarly, many bioethicists endorse proposed reimbursement mechanisms that compensate physicians and other professionals for asking the patient about his or her wishes and having a detailed discussion of these sensitive manners.
The Board of Directors of the American Society for Bioethics and Humanities deplore the attempts by opponents of health care reform to scare the public by parodying bioethicists’ efforts to promote respect for patients’ wishes concerning compassionate care at the end of life. Ripping language from its context in a living will or policy proposal can easily make any document or mechanism sound inhumane and cruel, but it is a form of dishonesty that merits only contempt.
The ASBH’s statement isn’t as good as the ABPD’s, focusing only on defending the honor of the profession, but it’s a start. Perhaps the ASBH will eventually be able to acknowledge that 99% of their members consider America’s 50 million uninsured to be a violation of all conceivable interpretations of ethics and human rights.
President Obama will shortly be appointing his own bioethics advisory body, and the signals are that it will not only be again reflective of the liberal mainstream of bioethics, like the Clinton National Bioethics Advisory Commission, but also be specifically tasked to focus on the questions of health care access and priority-setting. Let us urge the Obama administration and its bioethics advisors to have the courage to appoint proud and determined progressives to the body, and give up vain efforts at “balance.”
Bioethicists can no longer pretend to be wise non-partisan sages, dispensing timeless wisdom. With great reluctance they have been forced to become part of the increasingly divided biopolitical landscape.
--------------------------------------------------------------------------------
James Hughes Ph.D., the IEET Executive Director, is a bioethicist and sociologist at Trinity College in Hartford Connecticut USA. He is author of Citizen Cyborg and is working on a second book tentatively titled Cyborg Buddha. He produces a syndicated weekly radio program, Changesurfer Radio.
http://ieet.org/index.php/IEET/more/hughes20090831/
J. Hughes
Bioethicists might prefer to be seen as wise non-partisan sages, dispensing timeless wisdom. But now, albeit with great reluctance, they are forced to take an active role in the increasingly divided biopolitical landscape.
The Bush administration’s appointment of Leon Kass’s President’s Council on Bioethics shattered American bioethicists’ belief that they were above politics. The polarization of liberal and conservative bioethicists in the wake of Kass’s ascendancy revealed bioethics to be proto-biopolitics, a temporary academic sherry hour where colleagues could chat about cloning and the definition of death until they were drowned out by the clash of biopolitical partisans in the streets.
With the election of President Obama, championed as a return of Enlightenment values, I’m sure some bioethicists believed the partisan polarization could be set aside, forgotten as an aberration of the Bush years. Now the hard Right’s disinformation campaigns about “death panels” and attacks on bioethicists in the health reform debate have made clear that the majority of progressive bioethicists have to take a political stand for our Enlightenment values of freedom, equality and solidarity against the forces of reaction and unreason.
First we saw the demagoguing of the provision in the House reform bill that would have allowed doctors to be reimbursed for one conversation every five years with their patients about end of life planning and advance directives. The conversations would be, of course, voluntary, and the patients could choose an advance directive that insisted on a full court press till the bitter end. But the Fox News heads made this out to be a policy requiring all patients to sign up for an early death. Then they added the charge that the Veteran Affair’s booklet on end-of-life planning document, “Your Life, Your Choices” pushed veterans to end their lives, when in fact, like all advance directives materials, it simply asked whether the person would want to forgo life-sustaining treatment in a series of scenarios.
Next we saw the conspiracy theories about the bioethicist Ezekiel Emanuel being part of a grand plot to promote euthanasia and draconian rationing as part of the alleged socialized medical system the Democrats were creating. The Democrats aren’t, sadly, proposing a socialized medical system, or any draconian rationing, and Ezekiel Emanuel is not a proponent of draconian rationing schemes, simply common-sense utilitarian priority-setting. But a paragraph or two out of thirty years of voluminous writings on bioethics, taken out of context by the Republican noise machine and then placed in juxtaposition with disinformation about the Soylent Green suicide factories supposedly being run by the Brits and Canadians, and there was at least one frothing tea-bagger at every healthcare meeting quoting from the new Protocols of the Elders of Zeke.
Then, there was the charge that the Democrat’s health reforms would create “death panels,” a lie fabricated by the Republican propagandist Betsy McCaughey. One would think that Democrats would have been able to immediately turn this attack around, since it is in fact private managed care that runs death panels, by denying coverage to the sick, then denying services for the people they cover, and then dropping people from coverage when they get sick. But since half of the Democrats have been hopelessly compromised by cozy relationships with the health insurance industry and medical industrial complex these arguments rarely occur to them.
Fortunately, as is often (too often) the case, it took Jon Stewart’s brilliant cross-examination of McCaughey on The Daily Show to deflate the balloon of “death panel” hot air. Unfortunately, polls show the damage had already been done to a credulous public’s growing unease with the health care reform process, especially among seniors.
With the mounting campaign of hate being directed at bioethicists, and core concepts of bioethical practice that have been established for decades, the liberal bioethicists were finally stirred to response.
First came the statement from the Association of Bioethics Program Directors:
Three Myths About the Ethics of Health Care Reform
The American Bioethics Program Directors represents the leadership of 60 academic bioethics programs across North America. At this critical juncture in the national debate about health care reform in the United States, our membership wishes to send a clear message about some myths that challenge the ethics of reform proposals.
Myth #1: Health care reform will mean giving up control of my own health care decisions.
Fact: The field of bioethics has long championed the rights of individual patients to make their own health care decisions in consultation with their physicians. If we thought the major proposals being considered posed a serious threat to these rights, we would be the first to speak out. But that is NOT the case. The right of individuals to make decisions about their health care is engrained in the ethics of American medical practice and that won’t change under any of the approaches to health care reform currently under discussion.
Myth #2: Health care reform will control health care costs by depriving patients of important, but costly, medical treatments.
Fact: This is also untrue. If anything, the provisions in current health care proposals will increase the likelihood that patients will get quality medical care and decrease the likelihood of medical errors that kill thousands of patients every year. There are unethical ways to control costs, including refusing to treat the uninsured or those who have insurance but cannot afford the exorbitant out of pocket costs of expensive treatments-that is the status quo. Health care reform offers a more coherent approach to delivery of health care that aims to control costs while maintaining the quality Americans have come to expect and deserve.
Myth #3: Health care reform will deny older Americans medical treatments at the end of life.
Fact: This may be the most pernicious myth of all. In proposed approaches to reform, there is a provision that supports the rights of individuals and their families to make decisions at the end of life by institutionalizing a process for patients and families to express their desires to their physicians and other health care professionals. This right is part of the culture of American medicine, defended since the beginnings of the field of bioethics, and supported by case law going back over 50 years.
Some opponents of health care reform have twisted both the intent and effect of this provision, making unsupported claims about how it will push older Americans into hospice against their will, and even euthanasia. Nothing could be further from the truth. Straightforward conversations about end of life are critical to quality health care, with decisions continuing to be made by individuals and their families in ways that are consistent with their values and in consultation with their physicians.
Here is the real bottom line: The current state of health care is unethical. It is neither just nor fair. There is no morally defensible reason why some Americans get excellent medical care at costs they can afford and other Americans lose their homes or go into bankruptcy attempting to secure treatment for a seriously ill loved one. The current proposals being debated in Congress all go a long way towards making health care in America more just. At the same time, there is nothing in the current proposals that threatens a patient’s right to choose, a critical feature of an ethically acceptable health care system.
We commend efforts to reform the health care delivery system with commitments to cover all Americans while protecting choice and maintaining the high quality care that our fellow citizens deserve. We stand ready to aid however we can in this vital effort.
This statement put pressure on the American Society for Bioethics and Humanities, which is the largest association of bioethicists in the world. They have long had bitter internal divisions between “progressives” and “professionals” over the ASBH should take stands on ethical and political issues of the day.
With the careers and lives of bioethicists being threatened, the balance tipped and they finally issued a statement on August 25th:
Response to the Recent Attacks on Bioethicists
In recent days we have witnessed unfair attacks in print and on the Internet on prominent bioethicists such as Ezekiel Emanuel and Robert Pearlman. (cf. B. McCaughey, “Deadly Doctors” New York Post, August 17, 2009; J. Towey, “The Death Book for Veterans,” Wall Street Journal, August 18, 2009). In each case, these ethicists have been incorrectly portrayed as seeking to disenfranchise patients from the decision making process and thereby hasten their deaths.
Mischaracterizing the work of any of the thoughtful people who have tried to contribute to this debate, attributing to them nightmarish views for purely political purposes, not only perpetrates a heinous form of intellectual violence against those individuals, it denigrates bioethics as a profession, and more importantly, it does a profound disservice to the society that we seek to serve.
In our complex health-care system, there has proven to be no single method to guarantee that the wishes of the patient and his or her family will be respected when they choose to focus on the comfort of the patient rather than pursue other avenues of treatment.
As a result, bioethicists have often participated in the development of legislation, regulatory and accreditation standards, institutional policies, living wills, values histories, and a variety of other means to record the wishes of patients and to provide impetus to respect those wishes. Similarly, many bioethicists endorse proposed reimbursement mechanisms that compensate physicians and other professionals for asking the patient about his or her wishes and having a detailed discussion of these sensitive manners.
The Board of Directors of the American Society for Bioethics and Humanities deplore the attempts by opponents of health care reform to scare the public by parodying bioethicists’ efforts to promote respect for patients’ wishes concerning compassionate care at the end of life. Ripping language from its context in a living will or policy proposal can easily make any document or mechanism sound inhumane and cruel, but it is a form of dishonesty that merits only contempt.
The ASBH’s statement isn’t as good as the ABPD’s, focusing only on defending the honor of the profession, but it’s a start. Perhaps the ASBH will eventually be able to acknowledge that 99% of their members consider America’s 50 million uninsured to be a violation of all conceivable interpretations of ethics and human rights.
President Obama will shortly be appointing his own bioethics advisory body, and the signals are that it will not only be again reflective of the liberal mainstream of bioethics, like the Clinton National Bioethics Advisory Commission, but also be specifically tasked to focus on the questions of health care access and priority-setting. Let us urge the Obama administration and its bioethics advisors to have the courage to appoint proud and determined progressives to the body, and give up vain efforts at “balance.”
Bioethicists can no longer pretend to be wise non-partisan sages, dispensing timeless wisdom. With great reluctance they have been forced to become part of the increasingly divided biopolitical landscape.
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James Hughes Ph.D., the IEET Executive Director, is a bioethicist and sociologist at Trinity College in Hartford Connecticut USA. He is author of Citizen Cyborg and is working on a second book tentatively titled Cyborg Buddha. He produces a syndicated weekly radio program, Changesurfer Radio.
http://ieet.org/index.php/IEET/more/hughes20090831/
sábado, 25 de julio de 2009
El diagnóstico genético preimplantacional reduce el riesgo de transmisión de anomalías cromosómicas
Miércoles, 22 de Julio de 2009 Santiago Munné dirige en la actualidad el laboratorio de diagnóstico genético preimplantacional del Institute for Reproductive Medicine and Science en Livingston (Nueva Jersey, EE.UU.). Su labor consiste en la detección de translocaciones y anomalías cromosómicas relacionadas con la edad materna reproductiva mediante pruebas diagnósticas ensayadas en EE.UU., Perú, Reino Unido, España y Japón. Munné es autor de cerca de 200 trabajos científicos y se ha convertido en un orador habitual en congresos nacionales e internacionales como experto en genética preimplantacional.
Su interés por la genética le llevó directamente a EE.UU
Me doctoré en genética en la Universidad de Pittsburg y me uní, acto seguido, al equipo del Dr. Cohen en Cornell University Medical College de Nueva York (1991). Allí desarrollé el primer diagnóstico genético preimplantacional (DGP) para detectar anomalías cromosómicas numéricas en embriones y evitar enfermedades como el síndrome de Down, entre otras.
¿Por qué EE.UU.?
Porque el Jacques Cohen era el pionero mundial en este tipo de medicina y el responsable de la concepción del primer bebé probeta. Cohen ha desarrollado numerosas técnicas que han revolucionado el mundo de la fecundación in vitro (FIV). Hoy este centro es pionero en el desarrollo de tests de aneuploidía (cambios en el número de cromosomas, que pueden dar lugar a enfermedades genéticas) y translocaciones (alteración en la ubicación de determinado material cromosómico), con miles de ciclos realizados en esta materia.
También han demostrado mayores tasas de embarazo mediante la técnica del diagnóstico genético preimplantacional en mujeres de edad reproductiva avanzada.
Si, esta técnica también permite la detección de translocaciones cromosómicas en embriones humanos y reduce de forma significativa la tasa de abortos en las pacientes diagnosticadas (a la vez que evita el nacimiento de niños afectos). Nuestro grupo es líder mundial en cuanto a reducción de abortos espontáneos en mujeres mayores de 35 años que se someten a fertilización in vitro y al diagnóstico genético preimplantacional.
¿En qué consiste este diagnóstico?
Es una técnica innovadora que permite la detección de anomalías genéticas previa en ciclos de fertilización in vitro, antes de la transferencia del embrión al útero de la mujer.
Si sólo seleccionamos embriones sin enfermedades genéticas, ¿se terminarán erradicando estas patologías?
No es tan fácil. Muchas enfermedades se deben a más de un gen. Por ahora, nosotros nos centramos en el diagnóstico de enfermedades monogénicas (de un solo gen), como la hemofilia, fibrosis quística, atrofia muscular espinal y algunos cánceres hereditarios. Llevamos más de 20.000 ciclos diagnosticados.
¿Quiénes se benefician?
Todas las personas portadoras de translocaciones, inversiones u otras anomalías cromosómicas o enfermedades monogénicas, así como pacientes infértiles con historia previa de abortos espontáneos de repetición y otros pacientes de un ciclo de fertilización in vitro que requieran este tipo de análisis. Clínicas y hospitales pueden ofrecer desde ahora a sus pacientes un servicio integral en sus tratamientos de reproducción asistida, contando con el apoyo y la colaboración de un laboratorio líder en DGP, con protocolos que aseguran las tasas más bajas de error, incluyendo una técnica denominada NRR (”No Result Rescue”).
¿Como un seguro?
Es una prueba de reanálisis de muestras dudosas, con una tercera ronda con sondas teloméricas que evitan descartar una gran proporción de falsos positivos o la transferencia de falsos negativos.
¿Y no puede ocurrir como con las cesáreas, que los obstetras abusen de la técnica para evitar demandas de los pacientes?
No niego que este riesgo existe. En EE.UU. ya he tenido que tomar parte en algunos juicios a modo de perito, constatando que de haber empleado técnicas de diagnóstico genético preimplantacional en determinados programas de fertilización in vitro se hubieran podido evitar abortos o nacimientos con enfermedades genéticas.
¿Establece la FDA, el máximo organismo estadounidense en materia de regulación sanitaria, en qué circunstancias es preciso administrar esta técnica diagnóstica?
El principal beneficiario de esta técnica es el feto, y la Administración estadounidense no considera al feto como paciente, por lo que la técnica no necesita pasar este tipo de controles ni ceñirse a un determinado protocolo por ley.
¿Los médicos pueden servirse del diagnóstico genético preimplantacional a su antojo?
Siempre y cuando respeten la legislación sobre reproducción asistida y diagnóstico preimplantacional de cada país. En España hay una ley que regula perfectamente qué controles deben especificarse en los programas de fertilización in vitro. Los especialistas pueden decidir, de forma libre, si el DGP es necesario, a sabiendas de que su utilización no puede perjudicar en ningún caso el desarrollo del programa. No es como con la amniocentesis, en la que sí hay un riesgo implícito.
¿Están los especialistas por la labor?
En 2002, según el ICMART (International Comitee for Monitoring Assisted Reproductive Technology), los especialistas europeos reportaron un total de 265.622 ciclos de fertilización in vitro, a pesar de que la estimación de ciclos reales iniciados rondara sólo los 440.000. En todo el mundo se registraron un total de 471.641 y la estimación de ciclos reales, según el ICMART, está cifrada en 800.000
¿Gracias al diagnóstico genético preimplantacional?
A lo largo de los últimos años el DGP ha aumentado su espectro de aplicaciones. En el grupo de pacientes con infertilidad debida a anomalías cromosómicas, la opción de llevar a cabo un diagnóstico genético preimplantacional para valorar el número de juegos completos de cromosomas, la ploidía, de los embriones, ayuda a obtener embarazos evolutivos y a minimizar el riesgo de transmisión de cromosomopatías. De esta manera, el crecimiento de DGP se deriva directamente del crecimiento de los ciclos de fertilización in vitro.
Noticia publicada en el diario Consumer Eroski, el 14 de julio de 2009, en la sección “Salud”
Fuente: www.consumer.es
Su interés por la genética le llevó directamente a EE.UU
Me doctoré en genética en la Universidad de Pittsburg y me uní, acto seguido, al equipo del Dr. Cohen en Cornell University Medical College de Nueva York (1991). Allí desarrollé el primer diagnóstico genético preimplantacional (DGP) para detectar anomalías cromosómicas numéricas en embriones y evitar enfermedades como el síndrome de Down, entre otras.
¿Por qué EE.UU.?
Porque el Jacques Cohen era el pionero mundial en este tipo de medicina y el responsable de la concepción del primer bebé probeta. Cohen ha desarrollado numerosas técnicas que han revolucionado el mundo de la fecundación in vitro (FIV). Hoy este centro es pionero en el desarrollo de tests de aneuploidía (cambios en el número de cromosomas, que pueden dar lugar a enfermedades genéticas) y translocaciones (alteración en la ubicación de determinado material cromosómico), con miles de ciclos realizados en esta materia.
También han demostrado mayores tasas de embarazo mediante la técnica del diagnóstico genético preimplantacional en mujeres de edad reproductiva avanzada.
Si, esta técnica también permite la detección de translocaciones cromosómicas en embriones humanos y reduce de forma significativa la tasa de abortos en las pacientes diagnosticadas (a la vez que evita el nacimiento de niños afectos). Nuestro grupo es líder mundial en cuanto a reducción de abortos espontáneos en mujeres mayores de 35 años que se someten a fertilización in vitro y al diagnóstico genético preimplantacional.
¿En qué consiste este diagnóstico?
Es una técnica innovadora que permite la detección de anomalías genéticas previa en ciclos de fertilización in vitro, antes de la transferencia del embrión al útero de la mujer.
Si sólo seleccionamos embriones sin enfermedades genéticas, ¿se terminarán erradicando estas patologías?
No es tan fácil. Muchas enfermedades se deben a más de un gen. Por ahora, nosotros nos centramos en el diagnóstico de enfermedades monogénicas (de un solo gen), como la hemofilia, fibrosis quística, atrofia muscular espinal y algunos cánceres hereditarios. Llevamos más de 20.000 ciclos diagnosticados.
¿Quiénes se benefician?
Todas las personas portadoras de translocaciones, inversiones u otras anomalías cromosómicas o enfermedades monogénicas, así como pacientes infértiles con historia previa de abortos espontáneos de repetición y otros pacientes de un ciclo de fertilización in vitro que requieran este tipo de análisis. Clínicas y hospitales pueden ofrecer desde ahora a sus pacientes un servicio integral en sus tratamientos de reproducción asistida, contando con el apoyo y la colaboración de un laboratorio líder en DGP, con protocolos que aseguran las tasas más bajas de error, incluyendo una técnica denominada NRR (”No Result Rescue”).
¿Como un seguro?
Es una prueba de reanálisis de muestras dudosas, con una tercera ronda con sondas teloméricas que evitan descartar una gran proporción de falsos positivos o la transferencia de falsos negativos.
¿Y no puede ocurrir como con las cesáreas, que los obstetras abusen de la técnica para evitar demandas de los pacientes?
No niego que este riesgo existe. En EE.UU. ya he tenido que tomar parte en algunos juicios a modo de perito, constatando que de haber empleado técnicas de diagnóstico genético preimplantacional en determinados programas de fertilización in vitro se hubieran podido evitar abortos o nacimientos con enfermedades genéticas.
¿Establece la FDA, el máximo organismo estadounidense en materia de regulación sanitaria, en qué circunstancias es preciso administrar esta técnica diagnóstica?
El principal beneficiario de esta técnica es el feto, y la Administración estadounidense no considera al feto como paciente, por lo que la técnica no necesita pasar este tipo de controles ni ceñirse a un determinado protocolo por ley.
¿Los médicos pueden servirse del diagnóstico genético preimplantacional a su antojo?
Siempre y cuando respeten la legislación sobre reproducción asistida y diagnóstico preimplantacional de cada país. En España hay una ley que regula perfectamente qué controles deben especificarse en los programas de fertilización in vitro. Los especialistas pueden decidir, de forma libre, si el DGP es necesario, a sabiendas de que su utilización no puede perjudicar en ningún caso el desarrollo del programa. No es como con la amniocentesis, en la que sí hay un riesgo implícito.
¿Están los especialistas por la labor?
En 2002, según el ICMART (International Comitee for Monitoring Assisted Reproductive Technology), los especialistas europeos reportaron un total de 265.622 ciclos de fertilización in vitro, a pesar de que la estimación de ciclos reales iniciados rondara sólo los 440.000. En todo el mundo se registraron un total de 471.641 y la estimación de ciclos reales, según el ICMART, está cifrada en 800.000
¿Gracias al diagnóstico genético preimplantacional?
A lo largo de los últimos años el DGP ha aumentado su espectro de aplicaciones. En el grupo de pacientes con infertilidad debida a anomalías cromosómicas, la opción de llevar a cabo un diagnóstico genético preimplantacional para valorar el número de juegos completos de cromosomas, la ploidía, de los embriones, ayuda a obtener embarazos evolutivos y a minimizar el riesgo de transmisión de cromosomopatías. De esta manera, el crecimiento de DGP se deriva directamente del crecimiento de los ciclos de fertilización in vitro.
Noticia publicada en el diario Consumer Eroski, el 14 de julio de 2009, en la sección “Salud”
Fuente: www.consumer.es
Cómo sobrellevar las malas noticias genéticas
Un nuevo estudio sugiere que la mayoría de la gente puede reaccionar bien al saber que poseen un alto riesgo genético de contraer una enfermedad.
Al tiempo que las pruebas genéticas de venta directa al consumidor cada día se hacen más populares, una de las mayores preocupaciones para los eticistas y médicos es saber si el usuario medio es capaz de comprender las sutilezas que encierran los resultados de estas pruebas. En vez de dar una respuesta en blanco y negro, los tests predicen si alguien padece un riesgo elevado de desarrollar ciertas enfermedades comunes, como por ejemplo el Alzheimer. Incluso si los consumidores son capaces de entender los resultados, lo que se desconoce es la posible reacción que tendrían al saber que poseen una secuencia de ADN que eleva el riesgo de padecer una enfermedad.
Dos nuevos estudios sugieren que la mayoría de los pacientes sobrellevarían fácilmente la información genética negativa de este tipo. Las personas que descubren que poseen una variación genética de alto riesgo de la enfermedad de Alzheimer, llamada APOE4, no generan una mayor ansiedad acerca de sus posibilidades a largo plazo de la que generan aquellos que desconocen sus riesgos, según una investigación publicada hoy en el New England Journal of Medicine. Otro estudio reciente con fumadores reveló que aquellos que descubrieron que poseían un bajo riesgo genético de desarrollar cáncer de pulmón tenían el mismo interés en dejar de fumar que aquellos con la misma determinación y un mayor riesgo de cáncer.
“Estos descubrimientos puede que nos ayuden a atenuar el tipo de preocupaciones paternalistas que nos hacen proteger a los usuarios contra esta información,” afirma Colleen McBride, directora de la Rama de Investigación Social y de Comportamiento del Instituto Nacional para la Investigación del Genoma Humano, en Bethesda, Maryland, y autora senior del estudio con fumadores. “Las personas a las que se les da la opción de hacerse esta prueba se pueden proteger por sí solas, y les resulta útil conocer los resultados, incluso si el test no logra modificar su rutina diaria.”
Durante los últimos años, una serie de compañías han empezado a ofrecer pruebas genéticas directamente al consumidor. “Estudios como este son importantes puesto que, claramente, este tipo de tests se van a acabar implantando en la medicina general,” afirma Michael Chirstman, presidente del Instituto Coriell de Investigación Médica. Puesto que los resultados de este tipo de pruebas son mucho más complejos que los tests genéticos que con más frecuencia se usan hoy día en la medicina—normalmente, tests de un solo gen para ver si se sufren enfermedades poco comunes y graves, como la fibrosis cística—a los médicos les preocupa la forma en que la gente puede que reaccione. Hay quienes especulan que alguien con alto riesgo de contraer una enfermedad neurológica puede que evite comprometerse con relaciones a largo plazo, o alguien con poco riesgo genético de contraer la diabetes de tipo 2 puede que se lance a una dieta de donuts y hamburguesas con queso.
Hasta la fecha, la mayoría de los estudios sociológicos sobre pruebas genéticas se han enfocado en enfermedades hereditarias poco comunes en vez de en otras más frecuentes, como el Alzheimer. Robert Green y sus colegas de la Universidad de Boston forman parte de un grupo reducido de investigadores que están examinando esta cuestión: el equipo de Green se ha pasado la última década estudiando el impacto de los tests genéticos del APOE4, que triplica el riesgo de desarrollar Alzheimer en aquellos que heredan una copia, y lo aumenta diez veces en aquellos que poseen dos copias. No existen tratamientos probados para reducir el riesgo de Alzheimer en los portadores del APOE4, y las pruebas para la variante de riesgo no se suelen recomendar en la actualidad. No obstante, las encuestas indican que a un 15 por ciento de los médicos de salud primaria que tratan pacientes con Alzheimer se les ha preguntado acerca del test.
En el estudio de reciente publicación, Green y sus colegas ofrecieron el test de APOE4 a hijos adultos de personas con Alzheimer y después revelaron los resultados a la mitad del grupo. El equipo descubrió que la gente entendía claramente los resultados, y que seis semanas después de conocerlos, aquellos a los que se les dijo que tenían la variante de alto riesgo parecían estar más estresados que los otros participantes. Sin embargo, ese aumento en la ansiedad se calmó cuando los participantes fueron puestos a prueba una vez más a los seis meses y un año después.
Nos impresionó la cantidad de gente que quería saber los resultados: más del 20 por ciento querían recibirlos,” afirma Green. “Aunque los pacientes entendieron claramente que no había nada que pudieran hacer para aplazar la enfermedad, sus razones para conocer la verdad estaban al margen de la medicina: querían preparar a sus hijos, pensar en la longevidad de sus carreras.”
Por ejemplo, “la gente realmente cambia sus hábitos de contratación de seguros en base a esta información,” afirma Green. “Como profesionales de la salud, deberíamos ser cuidadosos y no ignorar esa clase de razones personales, siempre y cuando nos convenzamos a nosotros mismos de que no resulta dañino ofrecer este tipo de información.”
Green y sus colaboradores también han descubierto que la gente que descubre que poseen el gen de alto riesgo es más propensa a tomar vitaminas. “Con eso no hay problema, excepto que algunos de esos suplementos no están para nada regulados y pueden ser dañinos,” afirma. “Es fácil vincular los resultados genéticos al afán de la gente por comprar vitaminas que no han sido probadas. En el mejor de los casos, ese dinero acabaría siendo gastado en algo que no es más que una mera distracción y, en el peor de los casos, en algo que podría resultar dañino.”
Los investigadores advierten que los resultados del estudio no son, necesariamente, un indicador de la población general. Por ejemplo, el equipo de Green descartó a las personas que mostraron altos signos de estrés y depresión al comienzo del estudio. Tampoco se examinan todos los inconvenientes de las pruebas. En una editorial que acompaña al estudio, Rosalie Kane, especialista en salud pública, y Robert Kane, médico, ambos de la Universidad de Minnesota, en Minneapolis, afirman que a la gente con resultados positivos en cuanto a variaciones genéticas de alto riesgo se les puede denegar algún tipo de seguro. La Ley de No Discriminación por Genética, que se aprobó el año pasado, prohíbe este tipo de discriminación en el trabajo y en los seguros de salud, pero no en la vida, en las discapacidades o en los cuidados de salud a largo plazo.
Otras de las mayores preocupaciones relacionadas con la nueva generación de pruebas genéticas tiene que ver con la búsqueda de la mejor forma para presentar los resultados. En el estudio sobre APOE4 de Green, los participantes conocieron sus resultados de alto riesgo a través de unos consejeros genéticos—aunque esto no puede que siempre sea posible una vez que las pruebas se utilicen a escala más general. “Me interesaría poder trasladarme al futuro y ver cómo reciben los resultados la gente a la que no se le ofrece asesoría genética,” afirma Christman. “Esto es lo que hacen algunas de las compañías que actualmente ofrecen pruebas genéticas directas al consumidor.”
En el estudio sobre el cáncer de pulmón, McBride y sus colaboradores ofrecieron pruebas genéticas para detectar una variante asociada con un riesgo más alto de desarrollar cáncer de pulmón a aquellos fumadores con algún familiar enfermo de cáncer. La información acerca de los riesgos y ventajas del test, para que los pacientes decidieran hacerlo o no, así como los resultados de las pruebas, fueron entregados por internet.
Los investigadores descubrieron que todas las personas del estudio cuyos resultados dieron un alto riesgo entendieron los resultados, mientras que sólo un 60 por ciento de aquellos con bajo riesgo los entendieron. “De alguna manera, esto desafía nuestras expectativas,” afirma McBride. “Las teorías psicológicas predicen que la gente se protege a sí misma de la información que resulta amenazante, y una forma de hacerlo es no entendiendo dicha información.”
Los investigadores no encontraron diferencias entre el interés de los participantes con alto y bajo riesgo por utilizar herramientas que les ayudasen a dejar de fumar. “Decirle a alguien que tiene bajo riesgo no reduce su motivación para buscar formas de dejar de fumar, y que te digan que tienes alto riesgo no hace que estés más motivado,” afirma McBride. “Todos los fumadores tuvieron la misma motivación para entrar en la web y considerar hacerse las pruebas, y mostraron interés por una serie de distintos métodos para dejar de fumar.”
McBride afirma no creer que los tests genéticos por sí mismos motiven a la gente para dejar de fumar o perder peso, o cualquier otro cambio que les ayude a tener mejor salud. En vez de eso, afirma que los tests puede que sean útiles para que la gente de un primer paso—“para que la gente se apunte a un programa para dejar de fumar, o a un cambio en sus dietas.”
En la actualidad, McBride estudia el impacto de los tests genéticos que analizan varios puntos del genoma y evalúan el riesgo de padecer distintas enfermedades, como los que ya ofrecen una serie de compañías online dedicadas a las pruebas genéticas. “En este caso la historia se complica,” afirma. “Los resultados puede que entren en conflicto unos con otros, y es posible que la gente tenga un alto riesgo de padecer muchas enfermedades.”
Fuente: Technology Reviews, Link
http://mymanuel.wordpress.com/2009/07/17
Al tiempo que las pruebas genéticas de venta directa al consumidor cada día se hacen más populares, una de las mayores preocupaciones para los eticistas y médicos es saber si el usuario medio es capaz de comprender las sutilezas que encierran los resultados de estas pruebas. En vez de dar una respuesta en blanco y negro, los tests predicen si alguien padece un riesgo elevado de desarrollar ciertas enfermedades comunes, como por ejemplo el Alzheimer. Incluso si los consumidores son capaces de entender los resultados, lo que se desconoce es la posible reacción que tendrían al saber que poseen una secuencia de ADN que eleva el riesgo de padecer una enfermedad.
Dos nuevos estudios sugieren que la mayoría de los pacientes sobrellevarían fácilmente la información genética negativa de este tipo. Las personas que descubren que poseen una variación genética de alto riesgo de la enfermedad de Alzheimer, llamada APOE4, no generan una mayor ansiedad acerca de sus posibilidades a largo plazo de la que generan aquellos que desconocen sus riesgos, según una investigación publicada hoy en el New England Journal of Medicine. Otro estudio reciente con fumadores reveló que aquellos que descubrieron que poseían un bajo riesgo genético de desarrollar cáncer de pulmón tenían el mismo interés en dejar de fumar que aquellos con la misma determinación y un mayor riesgo de cáncer.
“Estos descubrimientos puede que nos ayuden a atenuar el tipo de preocupaciones paternalistas que nos hacen proteger a los usuarios contra esta información,” afirma Colleen McBride, directora de la Rama de Investigación Social y de Comportamiento del Instituto Nacional para la Investigación del Genoma Humano, en Bethesda, Maryland, y autora senior del estudio con fumadores. “Las personas a las que se les da la opción de hacerse esta prueba se pueden proteger por sí solas, y les resulta útil conocer los resultados, incluso si el test no logra modificar su rutina diaria.”
Durante los últimos años, una serie de compañías han empezado a ofrecer pruebas genéticas directamente al consumidor. “Estudios como este son importantes puesto que, claramente, este tipo de tests se van a acabar implantando en la medicina general,” afirma Michael Chirstman, presidente del Instituto Coriell de Investigación Médica. Puesto que los resultados de este tipo de pruebas son mucho más complejos que los tests genéticos que con más frecuencia se usan hoy día en la medicina—normalmente, tests de un solo gen para ver si se sufren enfermedades poco comunes y graves, como la fibrosis cística—a los médicos les preocupa la forma en que la gente puede que reaccione. Hay quienes especulan que alguien con alto riesgo de contraer una enfermedad neurológica puede que evite comprometerse con relaciones a largo plazo, o alguien con poco riesgo genético de contraer la diabetes de tipo 2 puede que se lance a una dieta de donuts y hamburguesas con queso.
Hasta la fecha, la mayoría de los estudios sociológicos sobre pruebas genéticas se han enfocado en enfermedades hereditarias poco comunes en vez de en otras más frecuentes, como el Alzheimer. Robert Green y sus colegas de la Universidad de Boston forman parte de un grupo reducido de investigadores que están examinando esta cuestión: el equipo de Green se ha pasado la última década estudiando el impacto de los tests genéticos del APOE4, que triplica el riesgo de desarrollar Alzheimer en aquellos que heredan una copia, y lo aumenta diez veces en aquellos que poseen dos copias. No existen tratamientos probados para reducir el riesgo de Alzheimer en los portadores del APOE4, y las pruebas para la variante de riesgo no se suelen recomendar en la actualidad. No obstante, las encuestas indican que a un 15 por ciento de los médicos de salud primaria que tratan pacientes con Alzheimer se les ha preguntado acerca del test.
En el estudio de reciente publicación, Green y sus colegas ofrecieron el test de APOE4 a hijos adultos de personas con Alzheimer y después revelaron los resultados a la mitad del grupo. El equipo descubrió que la gente entendía claramente los resultados, y que seis semanas después de conocerlos, aquellos a los que se les dijo que tenían la variante de alto riesgo parecían estar más estresados que los otros participantes. Sin embargo, ese aumento en la ansiedad se calmó cuando los participantes fueron puestos a prueba una vez más a los seis meses y un año después.
Nos impresionó la cantidad de gente que quería saber los resultados: más del 20 por ciento querían recibirlos,” afirma Green. “Aunque los pacientes entendieron claramente que no había nada que pudieran hacer para aplazar la enfermedad, sus razones para conocer la verdad estaban al margen de la medicina: querían preparar a sus hijos, pensar en la longevidad de sus carreras.”
Por ejemplo, “la gente realmente cambia sus hábitos de contratación de seguros en base a esta información,” afirma Green. “Como profesionales de la salud, deberíamos ser cuidadosos y no ignorar esa clase de razones personales, siempre y cuando nos convenzamos a nosotros mismos de que no resulta dañino ofrecer este tipo de información.”
Green y sus colaboradores también han descubierto que la gente que descubre que poseen el gen de alto riesgo es más propensa a tomar vitaminas. “Con eso no hay problema, excepto que algunos de esos suplementos no están para nada regulados y pueden ser dañinos,” afirma. “Es fácil vincular los resultados genéticos al afán de la gente por comprar vitaminas que no han sido probadas. En el mejor de los casos, ese dinero acabaría siendo gastado en algo que no es más que una mera distracción y, en el peor de los casos, en algo que podría resultar dañino.”
Los investigadores advierten que los resultados del estudio no son, necesariamente, un indicador de la población general. Por ejemplo, el equipo de Green descartó a las personas que mostraron altos signos de estrés y depresión al comienzo del estudio. Tampoco se examinan todos los inconvenientes de las pruebas. En una editorial que acompaña al estudio, Rosalie Kane, especialista en salud pública, y Robert Kane, médico, ambos de la Universidad de Minnesota, en Minneapolis, afirman que a la gente con resultados positivos en cuanto a variaciones genéticas de alto riesgo se les puede denegar algún tipo de seguro. La Ley de No Discriminación por Genética, que se aprobó el año pasado, prohíbe este tipo de discriminación en el trabajo y en los seguros de salud, pero no en la vida, en las discapacidades o en los cuidados de salud a largo plazo.
Otras de las mayores preocupaciones relacionadas con la nueva generación de pruebas genéticas tiene que ver con la búsqueda de la mejor forma para presentar los resultados. En el estudio sobre APOE4 de Green, los participantes conocieron sus resultados de alto riesgo a través de unos consejeros genéticos—aunque esto no puede que siempre sea posible una vez que las pruebas se utilicen a escala más general. “Me interesaría poder trasladarme al futuro y ver cómo reciben los resultados la gente a la que no se le ofrece asesoría genética,” afirma Christman. “Esto es lo que hacen algunas de las compañías que actualmente ofrecen pruebas genéticas directas al consumidor.”
En el estudio sobre el cáncer de pulmón, McBride y sus colaboradores ofrecieron pruebas genéticas para detectar una variante asociada con un riesgo más alto de desarrollar cáncer de pulmón a aquellos fumadores con algún familiar enfermo de cáncer. La información acerca de los riesgos y ventajas del test, para que los pacientes decidieran hacerlo o no, así como los resultados de las pruebas, fueron entregados por internet.
Los investigadores descubrieron que todas las personas del estudio cuyos resultados dieron un alto riesgo entendieron los resultados, mientras que sólo un 60 por ciento de aquellos con bajo riesgo los entendieron. “De alguna manera, esto desafía nuestras expectativas,” afirma McBride. “Las teorías psicológicas predicen que la gente se protege a sí misma de la información que resulta amenazante, y una forma de hacerlo es no entendiendo dicha información.”
Los investigadores no encontraron diferencias entre el interés de los participantes con alto y bajo riesgo por utilizar herramientas que les ayudasen a dejar de fumar. “Decirle a alguien que tiene bajo riesgo no reduce su motivación para buscar formas de dejar de fumar, y que te digan que tienes alto riesgo no hace que estés más motivado,” afirma McBride. “Todos los fumadores tuvieron la misma motivación para entrar en la web y considerar hacerse las pruebas, y mostraron interés por una serie de distintos métodos para dejar de fumar.”
McBride afirma no creer que los tests genéticos por sí mismos motiven a la gente para dejar de fumar o perder peso, o cualquier otro cambio que les ayude a tener mejor salud. En vez de eso, afirma que los tests puede que sean útiles para que la gente de un primer paso—“para que la gente se apunte a un programa para dejar de fumar, o a un cambio en sus dietas.”
En la actualidad, McBride estudia el impacto de los tests genéticos que analizan varios puntos del genoma y evalúan el riesgo de padecer distintas enfermedades, como los que ya ofrecen una serie de compañías online dedicadas a las pruebas genéticas. “En este caso la historia se complica,” afirma. “Los resultados puede que entren en conflicto unos con otros, y es posible que la gente tenga un alto riesgo de padecer muchas enfermedades.”
Fuente: Technology Reviews, Link
http://mymanuel.wordpress.com/2009/07/17
Healthcare 'rationing' is already here: Ethicist argues
Jul 20, 2009
Controversial philosopher and bioethicist Peter Singer weighed in on the ethical underpinnings of dividing the healthcare pie in a Socratic-style essay on rationing in Sunday's New York Times Magazine.
He concludes that rationing has been with us all along. So, rather than divvy up healthcare and insurance by unspoken values, the values and choices should be argued openly.
Here's how Singer leads readers in:
You have advanced kidney cancer. It will kill you, probably in the next year or two. A drug called Sutent slows the spread of the cancer and may give you an extra six months, but at a cost of $54,000. Is a few more months worth that much?
If you can afford it, you probably would pay that much, or more, to live longer, even if your quality of life wasn't going to be good. But suppose it's not you with the cancer but a stranger covered by your health-insurance fund. If the insurer provides this man -- and everyone else like him -- with Sutent, your premiums will increase. Do you still think the drug is a good value? Suppose the treatment cost a million dollars. Would it be worth it then? Ten million? Is there any limit to how much you would want your insurer to pay for a drug that adds six months to someone's life? If there is any point at which you say, ''No, an extra six months isn't worth that much,'' then you think that health care should be rationed.
Singer's challenge to face up to the meaning of such choices came as the Obama administration deployed top players to the Sunday talk shows to discuss the healthcare reform needs and strategies. Many abortion-and-contraception opponents are pouncing on White House Budget Dirctor Peter Orszag's refusal to say on Fox News whether abortion will be a tax-supported "essential benefit."
Singer, professor of bioethics at Princeton University, is a utilitarian, weighing what is moral by a calculated balancing of preferences. Some of his best known, and most controversial views: He's argued for equating animal and human rights, and said the fetus and the newborn disabled infant don't have the same moral standing as a thinking person and therefore may be killed.
In the rationing essay he doesn't champion any particular one of the five plans currently in play. His point is that people need to be clear-eyed in recognizing that every plan has a human-life valuation calculator built in to it -- a kind of rationing.
The question is whose values will be built in to the "essential benefits" in health insurance choices. He's asking what life is worth to you, whether certain lives are worth more or less and -- since so much of the battle to come is over dividing the tax dollar pie -- for whose life are you willing to pay?
http://content.usatoday.com
Controversial philosopher and bioethicist Peter Singer weighed in on the ethical underpinnings of dividing the healthcare pie in a Socratic-style essay on rationing in Sunday's New York Times Magazine.
He concludes that rationing has been with us all along. So, rather than divvy up healthcare and insurance by unspoken values, the values and choices should be argued openly.
Here's how Singer leads readers in:
You have advanced kidney cancer. It will kill you, probably in the next year or two. A drug called Sutent slows the spread of the cancer and may give you an extra six months, but at a cost of $54,000. Is a few more months worth that much?
If you can afford it, you probably would pay that much, or more, to live longer, even if your quality of life wasn't going to be good. But suppose it's not you with the cancer but a stranger covered by your health-insurance fund. If the insurer provides this man -- and everyone else like him -- with Sutent, your premiums will increase. Do you still think the drug is a good value? Suppose the treatment cost a million dollars. Would it be worth it then? Ten million? Is there any limit to how much you would want your insurer to pay for a drug that adds six months to someone's life? If there is any point at which you say, ''No, an extra six months isn't worth that much,'' then you think that health care should be rationed.
Singer's challenge to face up to the meaning of such choices came as the Obama administration deployed top players to the Sunday talk shows to discuss the healthcare reform needs and strategies. Many abortion-and-contraception opponents are pouncing on White House Budget Dirctor Peter Orszag's refusal to say on Fox News whether abortion will be a tax-supported "essential benefit."
Singer, professor of bioethics at Princeton University, is a utilitarian, weighing what is moral by a calculated balancing of preferences. Some of his best known, and most controversial views: He's argued for equating animal and human rights, and said the fetus and the newborn disabled infant don't have the same moral standing as a thinking person and therefore may be killed.
In the rationing essay he doesn't champion any particular one of the five plans currently in play. His point is that people need to be clear-eyed in recognizing that every plan has a human-life valuation calculator built in to it -- a kind of rationing.
The question is whose values will be built in to the "essential benefits" in health insurance choices. He's asking what life is worth to you, whether certain lives are worth more or less and -- since so much of the battle to come is over dividing the tax dollar pie -- for whose life are you willing to pay?
http://content.usatoday.com
How much is a year of your life worth?
By David Catron on 7.24.09 @ 6:09AM
All advocates of socialized medicine, including the President and his congressional accomplices, believe that government-imposed rationing is necessary to control health care costs. Having little faith in the judgment of individual patients and even less in the workings of the market, they are convinced that only the state is capable of efficiently allocating our medical resources. Very few of these people, however, have the courage of their convictions. With a few notable exceptions, they vehemently deny that they are for rationing. Indeed, as a matter of general strategy, they have done their best to exclude the "R" word from the reform debate. President Obama has gone so far as to explicitly to admonish his political allies "to avoid terms like 'rationing'" while promoting the Democrat health care agenda.
But, make no mistake about it, rationing will be an integral component of Obamacare. Last Sunday the President's budget chief admitted, "I'm not prepared to rule it out," when pressed for a straight answer on the issue. And another of Obama's advisors famously frets about the insistence of American physicians on doing "everything for the patient regardless of cost." Thus, stopping such costly interventions will be a primary mission of the "Federal Coordinating Council for Effectiveness Research," a new hive of health care apparatchiks created by the infamous "porkulus" bill. This new bureaucracy is intended to operate like its European counterparts, meaning that it will assign a monetary value to your life and deny your care if you contract a malady whose cost-of-treatment exceeds that amount.
If you are under the impression that it is impossible to calculate the value of a human life, you are obviously not a progressive policy expert or health care bureaucrat. This calculation, so elusive for philosophers and sages throughout the millennia, is child's play for such people. They have, in fact, already devised a formula for pricing out your life. It is called the "quality-adjusted-life-year" (QALY), and it assigns a numerical value to a year of life. A year of perfect health, for example, is given a value of 1.0 while a year of sub-optimum health is rated between 0 and 1. If you are confined to a wheelchair, a year of your life might be valued at half that of your ambulatory neighbor. If you are blind or deaf, you also score low. All that remains is to assign a specific dollar value to the QALY and, voilà, your life has a price tag.
Imagine, for a moment, what the harvest would have been had this soulless valuation system been applied throughout the West for the past three or four centuries. QALY would have rated John Milton, blind at the time he wrote Paradise Lost, at considerably less than 1. And the hearing-impaired Beethoven would have been lucky to score 0.5 on the QALY scale. For a more modern example, think of Stephen Hawking. Hawking is arguably the most gifted scientist since Isaac Newton, but QALY would value his life at very nearly zero. There would, however, have been winners in the life-rating lottery. The life of Ted Bundy, a good-looking, articulate young man in perfect physical health, would have been valued at a perfect 1.
And, lest you imagine that QALY is mere academic concept unlikely to be applied in the real world, it is already being used in countries burdened with socialized medicine. In Great Britain, for example, the National Institute for Health and Clinical Excellence (NICE) uses "cost per QALY" to determine if patients should receive expensive treatment or drugs. It was with this formula that NICE calculated the precise amount six months of an average Brit's life is worth. As the Wall Street Journal reports, "NICE currently holds that, except in unusual cases, Britain cannot afford to spend more than about $22,000 to extend a life by six months." In other words, patients whose country has guaranteed them "free" health care are in some cases refused treatment because the incremental cost per additional QALY is too high.
Nonetheless, despite the obvious moral dubiousness of QALY, some progressive policy experts openly advocate its use in the United States. Princeton Bioethics Professor Peter Singer recommended this approach just last week in the New York Times Magazine: "If a reformed U.S. health care system explicitly accepted rationing, as I have argued it should, QALYs could play a similar role in the U.S." Singer is untroubled that some severely ill patients will go without treatment simply because it is expensive: "A QALY approach may then lead us to give priority to helping others who are not so badly off and whose conditions are less expensive to treat." That the "badly off" patient may have been taxed all his life to support "universal" health care evidently has no meaning for the Professor.
Dr. Robert Wachter, Associate Chairman of the Department of Medicine at UC San Francisco, is likewise unconcerned about such "badly off" patients. Wachter writes at his blog that Singer's position would amount to mere common sense "in a society of grown-ups." In an apparent attempt to personify every "arrogant doctor" cliché known to man, Wachter pompously lectures his readers to the effect that government-imposed rationing is inevitable while heaping scorn on the Great Unwashed for daring to entertain alternative viewpoints: "Will the society that brings you Rush Limbaugh and Glenn Beck (or, I'm beginning to think, some of our Democratic representatives) deal with it in an effective, mature way? I truly doubt it."
Wachter, like many progressives, has a gift for unintentional irony. The real obstacle to an "effective" public discourse about rationing has nothing to do with talk radio hosts, television personalities, Blue Dog Democrats, or the immaturity of American society in general. It is, rather, the moral cowardice of the President and his allies in Congress that prevents a serious debate about rationing. If Barack Obama, Max Baucus, Nancy Pelosi, and the rest of their fellow travelers were honest, they would admit that they agree with Singer and Wachter. They would look us in the eye and tell us that the only way to control health care costs is for Washington to impose a Draconian rationing scheme that effectively puts a price on each of our heads.
Such a confession would certainly spark a vigorous national conversation. And this discussion would no doubt last until November of 2010, when the voters would give the Democrats the bum's rush they so richly deserve.
http://spectator.org/archives/2009/07/24/
All advocates of socialized medicine, including the President and his congressional accomplices, believe that government-imposed rationing is necessary to control health care costs. Having little faith in the judgment of individual patients and even less in the workings of the market, they are convinced that only the state is capable of efficiently allocating our medical resources. Very few of these people, however, have the courage of their convictions. With a few notable exceptions, they vehemently deny that they are for rationing. Indeed, as a matter of general strategy, they have done their best to exclude the "R" word from the reform debate. President Obama has gone so far as to explicitly to admonish his political allies "to avoid terms like 'rationing'" while promoting the Democrat health care agenda.
But, make no mistake about it, rationing will be an integral component of Obamacare. Last Sunday the President's budget chief admitted, "I'm not prepared to rule it out," when pressed for a straight answer on the issue. And another of Obama's advisors famously frets about the insistence of American physicians on doing "everything for the patient regardless of cost." Thus, stopping such costly interventions will be a primary mission of the "Federal Coordinating Council for Effectiveness Research," a new hive of health care apparatchiks created by the infamous "porkulus" bill. This new bureaucracy is intended to operate like its European counterparts, meaning that it will assign a monetary value to your life and deny your care if you contract a malady whose cost-of-treatment exceeds that amount.
If you are under the impression that it is impossible to calculate the value of a human life, you are obviously not a progressive policy expert or health care bureaucrat. This calculation, so elusive for philosophers and sages throughout the millennia, is child's play for such people. They have, in fact, already devised a formula for pricing out your life. It is called the "quality-adjusted-life-year" (QALY), and it assigns a numerical value to a year of life. A year of perfect health, for example, is given a value of 1.0 while a year of sub-optimum health is rated between 0 and 1. If you are confined to a wheelchair, a year of your life might be valued at half that of your ambulatory neighbor. If you are blind or deaf, you also score low. All that remains is to assign a specific dollar value to the QALY and, voilà, your life has a price tag.
Imagine, for a moment, what the harvest would have been had this soulless valuation system been applied throughout the West for the past three or four centuries. QALY would have rated John Milton, blind at the time he wrote Paradise Lost, at considerably less than 1. And the hearing-impaired Beethoven would have been lucky to score 0.5 on the QALY scale. For a more modern example, think of Stephen Hawking. Hawking is arguably the most gifted scientist since Isaac Newton, but QALY would value his life at very nearly zero. There would, however, have been winners in the life-rating lottery. The life of Ted Bundy, a good-looking, articulate young man in perfect physical health, would have been valued at a perfect 1.
And, lest you imagine that QALY is mere academic concept unlikely to be applied in the real world, it is already being used in countries burdened with socialized medicine. In Great Britain, for example, the National Institute for Health and Clinical Excellence (NICE) uses "cost per QALY" to determine if patients should receive expensive treatment or drugs. It was with this formula that NICE calculated the precise amount six months of an average Brit's life is worth. As the Wall Street Journal reports, "NICE currently holds that, except in unusual cases, Britain cannot afford to spend more than about $22,000 to extend a life by six months." In other words, patients whose country has guaranteed them "free" health care are in some cases refused treatment because the incremental cost per additional QALY is too high.
Nonetheless, despite the obvious moral dubiousness of QALY, some progressive policy experts openly advocate its use in the United States. Princeton Bioethics Professor Peter Singer recommended this approach just last week in the New York Times Magazine: "If a reformed U.S. health care system explicitly accepted rationing, as I have argued it should, QALYs could play a similar role in the U.S." Singer is untroubled that some severely ill patients will go without treatment simply because it is expensive: "A QALY approach may then lead us to give priority to helping others who are not so badly off and whose conditions are less expensive to treat." That the "badly off" patient may have been taxed all his life to support "universal" health care evidently has no meaning for the Professor.
Dr. Robert Wachter, Associate Chairman of the Department of Medicine at UC San Francisco, is likewise unconcerned about such "badly off" patients. Wachter writes at his blog that Singer's position would amount to mere common sense "in a society of grown-ups." In an apparent attempt to personify every "arrogant doctor" cliché known to man, Wachter pompously lectures his readers to the effect that government-imposed rationing is inevitable while heaping scorn on the Great Unwashed for daring to entertain alternative viewpoints: "Will the society that brings you Rush Limbaugh and Glenn Beck (or, I'm beginning to think, some of our Democratic representatives) deal with it in an effective, mature way? I truly doubt it."
Wachter, like many progressives, has a gift for unintentional irony. The real obstacle to an "effective" public discourse about rationing has nothing to do with talk radio hosts, television personalities, Blue Dog Democrats, or the immaturity of American society in general. It is, rather, the moral cowardice of the President and his allies in Congress that prevents a serious debate about rationing. If Barack Obama, Max Baucus, Nancy Pelosi, and the rest of their fellow travelers were honest, they would admit that they agree with Singer and Wachter. They would look us in the eye and tell us that the only way to control health care costs is for Washington to impose a Draconian rationing scheme that effectively puts a price on each of our heads.
Such a confession would certainly spark a vigorous national conversation. And this discussion would no doubt last until November of 2010, when the voters would give the Democrats the bum's rush they so richly deserve.
http://spectator.org/archives/2009/07/24/
sábado, 18 de julio de 2009
Organ donors run risk of being denied health insurance
By not making clear the financial risk of organ donation, insurers put donors in danger of losing affordable coverage and discourage potential donors from helping someone in need.
David Lazarus
July 15, 2009
Eight years ago, Los Angeles resident Patricia Abdullah decided to donate a kidney to an acquaintance. She calls it one of the proudest moments of her life.
Last year, Abdullah, 61, lost her job with a publishing company. With it, she lost her employer-based health insurance.
Booster Shots blog: Live organ donation seems to begin safely enough
.Now she wonders what will happen if she can't find another job with group coverage. If she turns to the individual insurance market, will her act of compassion as an organ donor be perceived by insurers as a "preexisting condition," resulting in higher premiums or even denial of coverage?
"My fear is that they won't accept me because of this," Abdullah said. "It's what they say about no good deed going unpunished."
This is a blurry aspect of the healthcare system. Advocates for organ donation assert that insurers can and do treat donors as having a preexisting condition, but there is little empirical evidence to back that up.
."I'm sure it happens," said Jason Kimbrough, a spokesman for the California Department of Insurance, "but it's not something we track."
Major insurance companies, including Blue Shield of California and Anthem Blue Cross,say they take such matters on a case-by-case basis and do not have standing policies.
But medical experts and people involved with organ transplants say that by not making clear what the financial risk to an organ donor may be, insurers are putting people in danger of losing affordable coverage and discouraging potential donors from helping others.
"It's a matter of informed consent," said James Walter, chairman of the Bioethics Institute at Loyola Marymount University. "To not make this risk clear is both dishonest and immoral."
Tom Mone, chief executive of OneLegacy, a L.A. nonprofit group that facilitates organ and tissue transplants throughout Southern California, said many people probably would think twice about donating an organ if they knew there was a chance that it could affect their health coverage. "Without a doubt it would be a factor," he said. "If people thought they could potentially lose coverage for something like this, I'm sure it would be a consideration."
According to the United Network for Organ Sharing, which collects data on every transplant in the United States, nearly 6,000 people donated a kidney last year. Almost 250 people donated a portion of their liver.
I contacted most major health insurers to ask whether a person who had donated a kidney or partial liver would be regarded as having a preexisting condition and thus subject to higher rates or denial of coverage.
Not one responded with a definitive answer.
"We would have to look at the specific facts before making a decision," said Ashley Wilkerson, a spokeswoman for Blue Shield of California.
A spokeswoman for Anthem Blue Cross advised me to put the question to the California Assn. of Health Plans, an industry group.
A spokeswoman for the association told me instead to put the question to Anthem and other individual insurers.
The only major insurer that agreed to discuss the matter in some detail was Kaiser Permanente, although its basic position was no different from its more reticent kin.
"Something like this is viewed like any other complicated surgery," said Jim Anderson, a spokesman for the healthcare provider. "It would be on a case-by-case basis."
He added: "Looking for black-and-white answers to complicated medical questions is a difficult thing to do."
Not that difficult, actually. A considerable body of data exists for the well-being of kidney and liver donors after the transplants are completed. In most cases, the donor goes on to live a normal and healthy life.
http://www.latimes.com
David Lazarus
July 15, 2009
Eight years ago, Los Angeles resident Patricia Abdullah decided to donate a kidney to an acquaintance. She calls it one of the proudest moments of her life.
Last year, Abdullah, 61, lost her job with a publishing company. With it, she lost her employer-based health insurance.
Booster Shots blog: Live organ donation seems to begin safely enough
.Now she wonders what will happen if she can't find another job with group coverage. If she turns to the individual insurance market, will her act of compassion as an organ donor be perceived by insurers as a "preexisting condition," resulting in higher premiums or even denial of coverage?
"My fear is that they won't accept me because of this," Abdullah said. "It's what they say about no good deed going unpunished."
This is a blurry aspect of the healthcare system. Advocates for organ donation assert that insurers can and do treat donors as having a preexisting condition, but there is little empirical evidence to back that up.
."I'm sure it happens," said Jason Kimbrough, a spokesman for the California Department of Insurance, "but it's not something we track."
Major insurance companies, including Blue Shield of California and Anthem Blue Cross,say they take such matters on a case-by-case basis and do not have standing policies.
But medical experts and people involved with organ transplants say that by not making clear what the financial risk to an organ donor may be, insurers are putting people in danger of losing affordable coverage and discouraging potential donors from helping others.
"It's a matter of informed consent," said James Walter, chairman of the Bioethics Institute at Loyola Marymount University. "To not make this risk clear is both dishonest and immoral."
Tom Mone, chief executive of OneLegacy, a L.A. nonprofit group that facilitates organ and tissue transplants throughout Southern California, said many people probably would think twice about donating an organ if they knew there was a chance that it could affect their health coverage. "Without a doubt it would be a factor," he said. "If people thought they could potentially lose coverage for something like this, I'm sure it would be a consideration."
According to the United Network for Organ Sharing, which collects data on every transplant in the United States, nearly 6,000 people donated a kidney last year. Almost 250 people donated a portion of their liver.
I contacted most major health insurers to ask whether a person who had donated a kidney or partial liver would be regarded as having a preexisting condition and thus subject to higher rates or denial of coverage.
Not one responded with a definitive answer.
"We would have to look at the specific facts before making a decision," said Ashley Wilkerson, a spokeswoman for Blue Shield of California.
A spokeswoman for Anthem Blue Cross advised me to put the question to the California Assn. of Health Plans, an industry group.
A spokeswoman for the association told me instead to put the question to Anthem and other individual insurers.
The only major insurer that agreed to discuss the matter in some detail was Kaiser Permanente, although its basic position was no different from its more reticent kin.
"Something like this is viewed like any other complicated surgery," said Jim Anderson, a spokesman for the healthcare provider. "It would be on a case-by-case basis."
He added: "Looking for black-and-white answers to complicated medical questions is a difficult thing to do."
Not that difficult, actually. A considerable body of data exists for the well-being of kidney and liver donors after the transplants are completed. In most cases, the donor goes on to live a normal and healthy life.
http://www.latimes.com
viernes, 10 de julio de 2009
Ethics on Value of Life the Dilemma for Health Care Reform
Published Jun 30, 2009
Doctors face tough questions about life and death, including the amount and quality of time a person can live. How much is life worth is an ethical dilemma doctors face when deciding upon a therapy. How can the value of life impact health care reform?
Oncologists often face the questions about life and death often because they deal with a disease, cancer, that kills many people. Some therapies promise only to give a few extra months of life. Some of those therapies are painful, invasive, or debilitating. The ethical concerns about cost of a procedure vs the length of time it can prolong a person’s life is an issue many physicians face with their patients. So how does a doctor make those choices?
According to an online commentary published June 29 in the Journal of the National Cancer Institute, how much is life worth is said to be an important discussion doctors should have with each other as they face ethical questions regarding their patients.
Tito Fojo, M.D., Ph.D., of the Medical Oncology Branch, Center of Cancer Research at the National Cancer Institute, in Bethesda, Md., and Christine Grady, Ph.D., of the Department of Bioethics, the Clinical Center at the National Institutes of Health have reported on this issue. They found that in the United States 18 weeks of cetuximab treatment for non-small cell lung cancer could extend life by 1.2 months and costs an average of $80,000. To extend life for one year would translate into an expenditure of $800,000 for one person. This means it would cost $440 billion annually, or 100 times the yearly budget for the National Cancer Institute, to extend the lives of a little over half million Americans by one year.
Because of this, the researchers state that studies should address those survival therapies that can be used for a cost of $20,000 for a course of treatment. They say life is of infinite value, but because of the increasing costs of cancer care it is impossible to provide treatment at the present costs. They declare:
"The current situation cannot continue. We cannot ignore the cumulative costs of the tests and treatments we recommend and prescribe. As the agents of change, professional societies, including their academic and practicing oncologist members, must lead the way," the authors write. "The time to start is now."
How much is life worth is also a question patients and their families ask themselves when dealing with the cost of medical care, the percentage chance a life can be saved, the length of time life can be prolonged and the cost of care along with the considerations of family finances. Those issues become particularly complicated by pain, disability and the impact of care physically and emotionally as well. It is further made difficult by what constitutes the end of life, as a medical and an ethical term. When a person loses complete function, at what point does one decide life ethically could end? These struggles face patients, families, caregivers and ethicists regularly.
Will these dilemmas be made easier to discuss and decide if there is a single payer system in the United States? Some say a state-run system allows for the equitability of medical care, but in many countries those with better incomes can pay for private insurance and receive better care, as in New Zealand and Mexico. This issue, along with costs for specific techniques for certain individuals are part of the discussion as politicians and physicians discuss the best type of care for the least amount of money and what type of system will be best for the greatest number of people. Presently certain types of insurance programs virtually ration medical care. Rationing is a significant worry as ethicists struggle over the value of life versus the cost of saving it and for how long. Will this be more or less with a single payer system? How will a doctor decide whether to use an expensive treatment and for what period of time and for what age and stage of the patient?
These are the ethical dilemmas as well as the practical ones facing President Barack Obama and his administration in examining health care reform that doctors face daily. They are not yet answered, but the researchers maintain, given the enormity of the costs of certain treatment for a relatively short period of life, some reasonable choices about cost versus quantity and quality of life need to be made part of any program design.
http://www.digitaljournal.com
Doctors face tough questions about life and death, including the amount and quality of time a person can live. How much is life worth is an ethical dilemma doctors face when deciding upon a therapy. How can the value of life impact health care reform?
Oncologists often face the questions about life and death often because they deal with a disease, cancer, that kills many people. Some therapies promise only to give a few extra months of life. Some of those therapies are painful, invasive, or debilitating. The ethical concerns about cost of a procedure vs the length of time it can prolong a person’s life is an issue many physicians face with their patients. So how does a doctor make those choices?
According to an online commentary published June 29 in the Journal of the National Cancer Institute, how much is life worth is said to be an important discussion doctors should have with each other as they face ethical questions regarding their patients.
Tito Fojo, M.D., Ph.D., of the Medical Oncology Branch, Center of Cancer Research at the National Cancer Institute, in Bethesda, Md., and Christine Grady, Ph.D., of the Department of Bioethics, the Clinical Center at the National Institutes of Health have reported on this issue. They found that in the United States 18 weeks of cetuximab treatment for non-small cell lung cancer could extend life by 1.2 months and costs an average of $80,000. To extend life for one year would translate into an expenditure of $800,000 for one person. This means it would cost $440 billion annually, or 100 times the yearly budget for the National Cancer Institute, to extend the lives of a little over half million Americans by one year.
Because of this, the researchers state that studies should address those survival therapies that can be used for a cost of $20,000 for a course of treatment. They say life is of infinite value, but because of the increasing costs of cancer care it is impossible to provide treatment at the present costs. They declare:
"The current situation cannot continue. We cannot ignore the cumulative costs of the tests and treatments we recommend and prescribe. As the agents of change, professional societies, including their academic and practicing oncologist members, must lead the way," the authors write. "The time to start is now."
How much is life worth is also a question patients and their families ask themselves when dealing with the cost of medical care, the percentage chance a life can be saved, the length of time life can be prolonged and the cost of care along with the considerations of family finances. Those issues become particularly complicated by pain, disability and the impact of care physically and emotionally as well. It is further made difficult by what constitutes the end of life, as a medical and an ethical term. When a person loses complete function, at what point does one decide life ethically could end? These struggles face patients, families, caregivers and ethicists regularly.
Will these dilemmas be made easier to discuss and decide if there is a single payer system in the United States? Some say a state-run system allows for the equitability of medical care, but in many countries those with better incomes can pay for private insurance and receive better care, as in New Zealand and Mexico. This issue, along with costs for specific techniques for certain individuals are part of the discussion as politicians and physicians discuss the best type of care for the least amount of money and what type of system will be best for the greatest number of people. Presently certain types of insurance programs virtually ration medical care. Rationing is a significant worry as ethicists struggle over the value of life versus the cost of saving it and for how long. Will this be more or less with a single payer system? How will a doctor decide whether to use an expensive treatment and for what period of time and for what age and stage of the patient?
These are the ethical dilemmas as well as the practical ones facing President Barack Obama and his administration in examining health care reform that doctors face daily. They are not yet answered, but the researchers maintain, given the enormity of the costs of certain treatment for a relatively short period of life, some reasonable choices about cost versus quantity and quality of life need to be made part of any program design.
http://www.digitaljournal.com
Reform debate fought on many fronts
Doctors and patients aren’t the only parties of interest in conversation on coverage
By Marshall Allen (contact)
Thursday, July 2, 2009 | 2 a.m.
The emergency room doctor’s exam shows with 90 percent certainty that the boy will be fine. That cost, say, $150.
For an additional $500, the doctor could order a CT scan and be 95 percent certain that the boy will be OK.
And for an additional $1,500, the doctor could order an MRI, and the parents could be 99 percent certain.
Dr. Ron Kline posed the theoretical scenario to illustrate a complexity of the health care reform debate. Many people say health care providers need to spend less on patient care, said Kline, president-elect of the Nevada State Medical Association. Insurance companies and employers that pay high premiums would oppose excessive testing.
But try telling the parents of a child who’s suffered a mild head injury that the tests are excessive.
As a doctor seeks 100 percent certainty in a diagnosis, “the costs go up exponentially,” Kline said.
Number of uninsured disputed
Congress is debating many major health care changes to correct a system that is collapsing financially. Health care spending is about 17 percent of the country’s gross domestic product and climbing. The federal budget is on an unsustainable path, primarily because of rising health care costs, according to the Congressional Budget Office.
The high cost of diagnostic procedures — and whether doctors are ordering too many tests — is just one of dozens of issues being raised in the discussion.
A larger part of the problem is the number of uninsured Americans, estimated at 47 million by the U.S. Census Bureau. People without insurance delay care until their diseases become more severe — which makes them expensive to treat — or get their health care in emergency rooms, where it is most expensive.
The many stakeholders in the health care reform debate — patients, business owners, unions, doctors, insurance companies, hospitals, and drug and medical device manufacturers — agree that change is necessary. But the challenge of the debate is that the same groups may be allied by one proposal but torn apart by another.
Sometimes they can’t even agree on the starting points for the discussion.
Take, for example, the debate about the number of uninsured Americans. The Census Bureau uses the 47 million figure, which is widely accepted by many reform advocates. But some conservatives dispute that figure, claiming that a large percentage of those 47 million are “voluntarily uninsured.” In other words, they could afford health insurance but choose not to buy it. The U.S. Chamber of Commerce estimates that 15 million of the uninsured Americans can afford health insurance.
Is health care a basic human right?
Myriad proposals are in play. Some suggest mandating that every person be insured. Some promise tax credits to help people pay health insurance premiums. Some want to require employers to provide insurance to workers. Some propose a public/government-run health insurance option that would be available for the uninsured and compete with private insurance companies. Some say the system needs to invest in preventing disease, or improved information technology, which could save costs in the long run.
Every proposal has detractors and supporters, special interest groups that are aligned on some ideas and opposed on others. The Las Vegas Chamber of Commerce opposes forcing employers to provide health insurance.
“We don’t believe it should be employer mandated because we believe there should be many choices and it should be consumer-driven options,” Kara Kelley, CEO of the Chamber, told the Sun’s sister publication, In Business Las Vegas.
Ethicists say the health care reform debate is being bogged down in nuts and bolts details when it should be grounded in the philosophical belief that no Americans should go without health care.
Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, points out that the main threat to reform is the lack of agreement that health care is a fundamental human right — like food and shelter.
“If you think that health care is a right then everything else gets worked out,” Caplan said. “If it’s a right, then how are we going to implement it? If you don’t think it’s a right, then you say: ‘I don’t like a public plan, information technology, etc.’ You’re not forced by a common commitment to reach a compromise.”
http://www.lasvegassun.com/news/2009/jul/02/reform-debate-fought-many-fronts/
By Marshall Allen (contact)
Thursday, July 2, 2009 | 2 a.m.
The emergency room doctor’s exam shows with 90 percent certainty that the boy will be fine. That cost, say, $150.
For an additional $500, the doctor could order a CT scan and be 95 percent certain that the boy will be OK.
And for an additional $1,500, the doctor could order an MRI, and the parents could be 99 percent certain.
Dr. Ron Kline posed the theoretical scenario to illustrate a complexity of the health care reform debate. Many people say health care providers need to spend less on patient care, said Kline, president-elect of the Nevada State Medical Association. Insurance companies and employers that pay high premiums would oppose excessive testing.
But try telling the parents of a child who’s suffered a mild head injury that the tests are excessive.
As a doctor seeks 100 percent certainty in a diagnosis, “the costs go up exponentially,” Kline said.
Number of uninsured disputed
Congress is debating many major health care changes to correct a system that is collapsing financially. Health care spending is about 17 percent of the country’s gross domestic product and climbing. The federal budget is on an unsustainable path, primarily because of rising health care costs, according to the Congressional Budget Office.
The high cost of diagnostic procedures — and whether doctors are ordering too many tests — is just one of dozens of issues being raised in the discussion.
A larger part of the problem is the number of uninsured Americans, estimated at 47 million by the U.S. Census Bureau. People without insurance delay care until their diseases become more severe — which makes them expensive to treat — or get their health care in emergency rooms, where it is most expensive.
The many stakeholders in the health care reform debate — patients, business owners, unions, doctors, insurance companies, hospitals, and drug and medical device manufacturers — agree that change is necessary. But the challenge of the debate is that the same groups may be allied by one proposal but torn apart by another.
Sometimes they can’t even agree on the starting points for the discussion.
Take, for example, the debate about the number of uninsured Americans. The Census Bureau uses the 47 million figure, which is widely accepted by many reform advocates. But some conservatives dispute that figure, claiming that a large percentage of those 47 million are “voluntarily uninsured.” In other words, they could afford health insurance but choose not to buy it. The U.S. Chamber of Commerce estimates that 15 million of the uninsured Americans can afford health insurance.
Is health care a basic human right?
Myriad proposals are in play. Some suggest mandating that every person be insured. Some promise tax credits to help people pay health insurance premiums. Some want to require employers to provide insurance to workers. Some propose a public/government-run health insurance option that would be available for the uninsured and compete with private insurance companies. Some say the system needs to invest in preventing disease, or improved information technology, which could save costs in the long run.
Every proposal has detractors and supporters, special interest groups that are aligned on some ideas and opposed on others. The Las Vegas Chamber of Commerce opposes forcing employers to provide health insurance.
“We don’t believe it should be employer mandated because we believe there should be many choices and it should be consumer-driven options,” Kara Kelley, CEO of the Chamber, told the Sun’s sister publication, In Business Las Vegas.
Ethicists say the health care reform debate is being bogged down in nuts and bolts details when it should be grounded in the philosophical belief that no Americans should go without health care.
Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, points out that the main threat to reform is the lack of agreement that health care is a fundamental human right — like food and shelter.
“If you think that health care is a right then everything else gets worked out,” Caplan said. “If it’s a right, then how are we going to implement it? If you don’t think it’s a right, then you say: ‘I don’t like a public plan, information technology, etc.’ You’re not forced by a common commitment to reach a compromise.”
http://www.lasvegassun.com/news/2009/jul/02/reform-debate-fought-many-fronts/
domingo, 14 de junio de 2009
For CARTaGENE to be a success, it must recruit 20,000 people between 40 and 69 years of age." - Dr. Claude Laberge
MONTREAL, May 18 /CNW Telbec/ - The CARTaGENE Project, one of the largest
health and genomics projects ever carried out in Quebec, seeks to recruit
20,000 people to participate in Phase A of its wide-ranging study on the
determinants of health (lifestyles, genetics, environment and nutrition) of
Quebecers.
The resulting resource will consist of a biospecimen bank and a health
database. Upon request, the data collected by CARTaGENE will be made available
in coded form to researchers who meet the project's scientific and ethical
standards. Coded information drawn from government health data will also be
available.
CARTaGENE will make possible a wide range of studies that could improve
our understanding of health and the origin of disease and, in the medium and
long term, allow us to develop more appropriate interventions and more
accurate diagnostics and prevention tools.
Potential participants will be randomly selected by the Régie de
l'assurance maladie du Québec. In the coming days, those selected will begin
receiving letters inviting them to participate. Naturally, they are free to
accept or decline the invitation. The selection process will continue over
several months.
"The success of this project depends upon participant response," said Dr.
Claude Laberge, CARTaGENE's scientific director and official spokesperson. "We
would like to thank everyone who took the time to participate in our pilot
project last winter. It is thanks to them that CARTaGENE can begin Phase A of
its recruitment drive."
Phase A will start in June 2009. When participants visit a CARTaGENE
recruitment site, they will answer a health questionnaire and provide urine
and blood samples. A portion of the samples will be analyzed. The remainder
will be stored at the Genome Quebec and Centre hospitalier affilié
universitaire régional de Chicoutimi Biobank (GQ-CAURC). Qualified and
specially-trained nurses will guide them through the process. They will also
take physical measurements including height, weight, waist and hip
circumference, blood pressure and pulse. Participants will also be invited to
assess their experience by filling out a satisfaction questionnaire at home.
On average, active participation will take two and a half hours. Participants
will also be asked whether they agree to be contacted again, and whether they
wish to participate in CARTaGENE's genealogical option, in association with
the BALSAC Project, by filling out a questionnaire at home.
Targeted regions
"Our objective is to create a public resource for research," according to
Dr. Laberge. "We are targeting people between 40 and 69 who live in the
greater Montreal, Sherbrooke, Saguenay (Chicoutimi) and Quebec City areas. By
reaching our goal of 20,000 participants over the next months, we will have a
resource that will give us a good portrait of the Quebec population's health
status and genetic diversity."
Coded samples guarantee confidentiality
"We are most proud of the fact that participant confidentiality will be
guaranteed through every stage of the project," added Dr. Laberge. "No name,
address, telephone or cell phone number, or email address will be stored in
the CARTaGENE database. Codes will replace this personal information. Access
to coded data and samples will only be provided to researchers who receive
necessary approvals from the ethics and scientific committees. At no time will
insurance companies or employers be allowed to access CARTaGENE data or
samples."
Team project
Many public institutions, organizations and projects are actively
involved in the CARTaGENE Project. The Université de Montréal is responsible
for the entire project. Financial support for genome research is provided by
two public organizations, Genome Canada and Genome Quebec. The Genome Quebec
and Centre hospitalier affilié universitaire régional de Chicoutimi Biobank
(GQ-CAURC) is responsible for sample storage. The Régie de l'assurance maladie
du Québec (RAMQ) is involved in the selection and recruitment of participants.
The BALSAC Project of the Université du Québec à Chicoutimi (UQAC) will retain
genealogical information and keep it confidential.
CARTaGENE has a national scope, thanks to its association with the
Canadian Partnership for Tomorrow Project (CPTP), which has the goal of
creating a research resource of 300,000 participants from across Canada.
CARTaGENE also has an international scope as a member of the Public
Population Project in Genomics (P3G), which coordinates collaboration between
25 similar projects around the world.
IMPORTANT
Consult the Press Room (Press Files) on www.cartagene.qc.ca to obtain :
Recruitment overview
Flow chart of participant
Structure of CARTaGENE
List of visual content
Partners
History and biographies
From an idea...
Dr. Claude Laberge initiated the idea of the CARTaGENE Project in 2000.
His ambitious vision was to create a biobank of urine and blood samples and a
database. The ultimate goal of the project was to facilitate and accelerate
health and genetics research on the population of Quebec. The project's
concept gradually evolved into its final form a few years later.
...to reality
On May 22, 2007 in Montreal, CARTaGENE announced its project financing at
the Human Genome Organization's 12th International Conference on the Human
Genome. The press conference was held jointly with Canada Economic Development
(CED), the Ministère du Développement économique, de l'Innovation et de
l'Exportation du Québec (MDEIE), Genome Canada, Genome Quebec, the Université
de Montréal (UdeM) and the Public Population Project in Genomics (P3G). A few
months later, financing for the Genome Quebec and Centre hospitalier affilié
universitaire régional de Chicoutimi Biobank (GQ-CAURC Biobank) was announced.
The biobank will provide the storage infrastructure for CARTaGENE's blood and
urine samples.
Optimization Phase
In January and February 2008, CARTaGENE recruited 223 people from a list
of randomly-selected names from Régie de l'assurance maladie du Québec (RAMQ)
files. This first recruitment phase targeted the Montreal, Montérégie and
Sherbrooke areas. Qualified nurses collected urine and blood samples, took
physical measurements and gathered information on the health status of
participants. The contribution of these first volunteers allowed CARTaGENE to
fine-tune its recruitment and collection methods, tools and instruments.
Harmonization
In 2008, CARTaGENE and P3G joined forces to match their methods and tools
with those of similar projects internationally. This process, called
harmonization, brings together many populational genome projects around the
world. With harmonization comes the possibility of sharing data for
large-scale statistical analysis. In 2008, CARTaGENE also joined the Canadian
Partnership for Tomorrow Project (CPTP), which has the goal of creating a
research platform that combines cohorts like CARTaGENE's from five provinces.
Recruitment
In May 2009, CARTaGENE will begin its main recruitment phase (Phase A)
with the objective of creating a biobank and database containing samples and
data from 20,223 individuals by 2010. This phase culminates many years of hard
work assessing and improving the project's scientific, ethical and governance
frameworks.
Biography of Claude Laberge
Claude Laberge is Professor of Medicine and Pediatrics in the Faculty of
Medicine at Université Laval in Quebec City. His scientific interests and
publications are in the fields of genetic screening, genetic epidemiology and
policy, and founder effects in demographic genetics, especially with regards
to hereditary tyrosinemia type I and myotonic dystrophy. He is an associate
researcher at the Public Law Research Centre (CRDP) of the Université de
Montréal where he collaborates with Professor Bartha Maria Knoppers and her
team on research projects involving various ethical and sociological issues of
genetic epidemiology, notably the consent to DNA sampling.
Claude Laberge obtained his M.D. from the Faculty of Medicine of
Université Laval in 1962. From 1962 to 1964, he did his residency in
Pediatrics at The Hospital for Sick Children in Toronto. In 1968, he received
a Ph. D. in Human Genetics from Johns Hopkins University for his thesis,
Genetic Studies in French Canadians, under the direction of Professor Victor
A. McKusick. He passed the exams in Pediatrics for Fellowship in The Royal
College of Physicians and Surgeons of Canada and Quebec's Collège des Médecins
in 1967-1968.
He founded the Department of Clinical Genetic Medicine in the Department
of Medicine of the Université Laval Medical Centre (CHUL), which he headed
from 1969 to 1994. He was Chief of Medicine at CHUL from 1975 to 1980. In
1969, with Professors Charles R. Scriver of McGill University and Didier
Dufour of Université Laval and Carol Clow of the Montreal Children's Hospital,
he founded the Quebec Network of Genetic Medicine. He was President of this
organization until its dissolution by Quebec's Ministère de la Santé et des
Services sociaux in 1994. The network was responsible for systematic neonatal
screening by blood and urine samples on filter paper. From 1993 to 2004, he
was the President of the Réseau de médecine génétique appliquée (RMGA; Network
of Applied Genetic Medicine) of the Fonds de la recherche en santé du Québec
(FRSQ; Quebec Health Research Fund). He founded the CARTaGENE Project in 2000.
Biography of Bartha Maria Knoppers
BARTHA MARIA KNOPPERS, Ph. D., O. C., Canada Research Chair in Law and
Medicine and Chaire d'excellence Pierre de Fermat (France) (2006-2008). She is
also Professor in the Faculty of Law and Senior Researcher at the Centre for
Public Law (CRDP) at Université de Montréal.
She served as Chair of the International Ethics Committee of the Human
Genome Organization (HUGO) from 1996 to 2004 and from 1993 to 1997, was member
of the UNESCO International Bioethics Committee, which drafted the Universal
Declaration on the Human Genome and Human Rights. She is also the co-founder
of the International Institute of Research in Ethics and Biomedicine (IIREB)
and a researcher with the Quebec Réseau de médecine de génétique appliquée
(Network of Applied Genetic Medicine; RMGA). From 2000 to 2006, she served on
the board of Genome Canada and the Canadian Stem Cell Network. In 2003, she
was named Chair of the Ethics Working Party of the International Stem Cell
Forum. In 2003, Bartha Maria Knoppers became founder and Chair of the
international Public Population Project in Genomics (P3G) and Principal
Investigator of CARTaGENE.
Bartha Maria Knoppers has received honorary doctorates in law from the
University of Waterloo, Université Paris V (Paris Descartes), McMaster
University and the University of Alberta. In February 2002, she was elected
Fellow of the American Association for the Advancement of Science and in May
2002 was named Officer of the Order of Canada and received the Queen's Jubilee
Medal.
In 2003, she was elected Fellow of The Hastings Center (Bioethics), New
York, and member of the International Ethics Committee of WADA. The Canadian
Academy of Health Sciences (CAHS) elected her Fellow in April 2005. She is a
Governor and Advocatus Emeritus of the Quebec Bar.
http://www.cnw.ca/fr/
health and genomics projects ever carried out in Quebec, seeks to recruit
20,000 people to participate in Phase A of its wide-ranging study on the
determinants of health (lifestyles, genetics, environment and nutrition) of
Quebecers.
The resulting resource will consist of a biospecimen bank and a health
database. Upon request, the data collected by CARTaGENE will be made available
in coded form to researchers who meet the project's scientific and ethical
standards. Coded information drawn from government health data will also be
available.
CARTaGENE will make possible a wide range of studies that could improve
our understanding of health and the origin of disease and, in the medium and
long term, allow us to develop more appropriate interventions and more
accurate diagnostics and prevention tools.
Potential participants will be randomly selected by the Régie de
l'assurance maladie du Québec. In the coming days, those selected will begin
receiving letters inviting them to participate. Naturally, they are free to
accept or decline the invitation. The selection process will continue over
several months.
"The success of this project depends upon participant response," said Dr.
Claude Laberge, CARTaGENE's scientific director and official spokesperson. "We
would like to thank everyone who took the time to participate in our pilot
project last winter. It is thanks to them that CARTaGENE can begin Phase A of
its recruitment drive."
Phase A will start in June 2009. When participants visit a CARTaGENE
recruitment site, they will answer a health questionnaire and provide urine
and blood samples. A portion of the samples will be analyzed. The remainder
will be stored at the Genome Quebec and Centre hospitalier affilié
universitaire régional de Chicoutimi Biobank (GQ-CAURC). Qualified and
specially-trained nurses will guide them through the process. They will also
take physical measurements including height, weight, waist and hip
circumference, blood pressure and pulse. Participants will also be invited to
assess their experience by filling out a satisfaction questionnaire at home.
On average, active participation will take two and a half hours. Participants
will also be asked whether they agree to be contacted again, and whether they
wish to participate in CARTaGENE's genealogical option, in association with
the BALSAC Project, by filling out a questionnaire at home.
Targeted regions
"Our objective is to create a public resource for research," according to
Dr. Laberge. "We are targeting people between 40 and 69 who live in the
greater Montreal, Sherbrooke, Saguenay (Chicoutimi) and Quebec City areas. By
reaching our goal of 20,000 participants over the next months, we will have a
resource that will give us a good portrait of the Quebec population's health
status and genetic diversity."
Coded samples guarantee confidentiality
"We are most proud of the fact that participant confidentiality will be
guaranteed through every stage of the project," added Dr. Laberge. "No name,
address, telephone or cell phone number, or email address will be stored in
the CARTaGENE database. Codes will replace this personal information. Access
to coded data and samples will only be provided to researchers who receive
necessary approvals from the ethics and scientific committees. At no time will
insurance companies or employers be allowed to access CARTaGENE data or
samples."
Team project
Many public institutions, organizations and projects are actively
involved in the CARTaGENE Project. The Université de Montréal is responsible
for the entire project. Financial support for genome research is provided by
two public organizations, Genome Canada and Genome Quebec. The Genome Quebec
and Centre hospitalier affilié universitaire régional de Chicoutimi Biobank
(GQ-CAURC) is responsible for sample storage. The Régie de l'assurance maladie
du Québec (RAMQ) is involved in the selection and recruitment of participants.
The BALSAC Project of the Université du Québec à Chicoutimi (UQAC) will retain
genealogical information and keep it confidential.
CARTaGENE has a national scope, thanks to its association with the
Canadian Partnership for Tomorrow Project (CPTP), which has the goal of
creating a research resource of 300,000 participants from across Canada.
CARTaGENE also has an international scope as a member of the Public
Population Project in Genomics (P3G), which coordinates collaboration between
25 similar projects around the world.
IMPORTANT
Consult the Press Room (Press Files) on www.cartagene.qc.ca to obtain :
Recruitment overview
Flow chart of participant
Structure of CARTaGENE
List of visual content
Partners
History and biographies
From an idea...
Dr. Claude Laberge initiated the idea of the CARTaGENE Project in 2000.
His ambitious vision was to create a biobank of urine and blood samples and a
database. The ultimate goal of the project was to facilitate and accelerate
health and genetics research on the population of Quebec. The project's
concept gradually evolved into its final form a few years later.
...to reality
On May 22, 2007 in Montreal, CARTaGENE announced its project financing at
the Human Genome Organization's 12th International Conference on the Human
Genome. The press conference was held jointly with Canada Economic Development
(CED), the Ministère du Développement économique, de l'Innovation et de
l'Exportation du Québec (MDEIE), Genome Canada, Genome Quebec, the Université
de Montréal (UdeM) and the Public Population Project in Genomics (P3G). A few
months later, financing for the Genome Quebec and Centre hospitalier affilié
universitaire régional de Chicoutimi Biobank (GQ-CAURC Biobank) was announced.
The biobank will provide the storage infrastructure for CARTaGENE's blood and
urine samples.
Optimization Phase
In January and February 2008, CARTaGENE recruited 223 people from a list
of randomly-selected names from Régie de l'assurance maladie du Québec (RAMQ)
files. This first recruitment phase targeted the Montreal, Montérégie and
Sherbrooke areas. Qualified nurses collected urine and blood samples, took
physical measurements and gathered information on the health status of
participants. The contribution of these first volunteers allowed CARTaGENE to
fine-tune its recruitment and collection methods, tools and instruments.
Harmonization
In 2008, CARTaGENE and P3G joined forces to match their methods and tools
with those of similar projects internationally. This process, called
harmonization, brings together many populational genome projects around the
world. With harmonization comes the possibility of sharing data for
large-scale statistical analysis. In 2008, CARTaGENE also joined the Canadian
Partnership for Tomorrow Project (CPTP), which has the goal of creating a
research platform that combines cohorts like CARTaGENE's from five provinces.
Recruitment
In May 2009, CARTaGENE will begin its main recruitment phase (Phase A)
with the objective of creating a biobank and database containing samples and
data from 20,223 individuals by 2010. This phase culminates many years of hard
work assessing and improving the project's scientific, ethical and governance
frameworks.
Biography of Claude Laberge
Claude Laberge is Professor of Medicine and Pediatrics in the Faculty of
Medicine at Université Laval in Quebec City. His scientific interests and
publications are in the fields of genetic screening, genetic epidemiology and
policy, and founder effects in demographic genetics, especially with regards
to hereditary tyrosinemia type I and myotonic dystrophy. He is an associate
researcher at the Public Law Research Centre (CRDP) of the Université de
Montréal where he collaborates with Professor Bartha Maria Knoppers and her
team on research projects involving various ethical and sociological issues of
genetic epidemiology, notably the consent to DNA sampling.
Claude Laberge obtained his M.D. from the Faculty of Medicine of
Université Laval in 1962. From 1962 to 1964, he did his residency in
Pediatrics at The Hospital for Sick Children in Toronto. In 1968, he received
a Ph. D. in Human Genetics from Johns Hopkins University for his thesis,
Genetic Studies in French Canadians, under the direction of Professor Victor
A. McKusick. He passed the exams in Pediatrics for Fellowship in The Royal
College of Physicians and Surgeons of Canada and Quebec's Collège des Médecins
in 1967-1968.
He founded the Department of Clinical Genetic Medicine in the Department
of Medicine of the Université Laval Medical Centre (CHUL), which he headed
from 1969 to 1994. He was Chief of Medicine at CHUL from 1975 to 1980. In
1969, with Professors Charles R. Scriver of McGill University and Didier
Dufour of Université Laval and Carol Clow of the Montreal Children's Hospital,
he founded the Quebec Network of Genetic Medicine. He was President of this
organization until its dissolution by Quebec's Ministère de la Santé et des
Services sociaux in 1994. The network was responsible for systematic neonatal
screening by blood and urine samples on filter paper. From 1993 to 2004, he
was the President of the Réseau de médecine génétique appliquée (RMGA; Network
of Applied Genetic Medicine) of the Fonds de la recherche en santé du Québec
(FRSQ; Quebec Health Research Fund). He founded the CARTaGENE Project in 2000.
Biography of Bartha Maria Knoppers
BARTHA MARIA KNOPPERS, Ph. D., O. C., Canada Research Chair in Law and
Medicine and Chaire d'excellence Pierre de Fermat (France) (2006-2008). She is
also Professor in the Faculty of Law and Senior Researcher at the Centre for
Public Law (CRDP) at Université de Montréal.
She served as Chair of the International Ethics Committee of the Human
Genome Organization (HUGO) from 1996 to 2004 and from 1993 to 1997, was member
of the UNESCO International Bioethics Committee, which drafted the Universal
Declaration on the Human Genome and Human Rights. She is also the co-founder
of the International Institute of Research in Ethics and Biomedicine (IIREB)
and a researcher with the Quebec Réseau de médecine de génétique appliquée
(Network of Applied Genetic Medicine; RMGA). From 2000 to 2006, she served on
the board of Genome Canada and the Canadian Stem Cell Network. In 2003, she
was named Chair of the Ethics Working Party of the International Stem Cell
Forum. In 2003, Bartha Maria Knoppers became founder and Chair of the
international Public Population Project in Genomics (P3G) and Principal
Investigator of CARTaGENE.
Bartha Maria Knoppers has received honorary doctorates in law from the
University of Waterloo, Université Paris V (Paris Descartes), McMaster
University and the University of Alberta. In February 2002, she was elected
Fellow of the American Association for the Advancement of Science and in May
2002 was named Officer of the Order of Canada and received the Queen's Jubilee
Medal.
In 2003, she was elected Fellow of The Hastings Center (Bioethics), New
York, and member of the International Ethics Committee of WADA. The Canadian
Academy of Health Sciences (CAHS) elected her Fellow in April 2005. She is a
Governor and Advocatus Emeritus of the Quebec Bar.
http://www.cnw.ca/fr/
Cross border health care
by Prof. Pierre Mallia
There are a number of EU directives which apply to the rights of EU citizens to receive medical health care when outside their country but within the European Union. This applies mostly to emergency treatment and has also proved of benefit to those who cannot receive a procedure, for example, within their country of origin either due to lack of the service or merely because of undue prolonged waiting. Yet the EU was set up as an economic zone and therefore includes the facilitation of transfer of workers between EU states.
When it comes to transfer of workers, especially those travelling with their family, primary health becomes all the more important. EU states differ considerably between themselves on the type of service they offer. Some are mostly state-based; others insurance based. Certainly if one is to travel to another country, say Holland, with one’s family, it is a concern, if not a headache, to consider what kind of health services are offered for day-to-day ailments which necessitate the calling of a doctor. In Malta one may be used to call one’s GP at home and get prompt service. But this is a private service which is not, by right, entitled to other EU citizens. They would have to pay for it. Considering the small fee local family doctors charge, it is worth the while of any EU citizen travelling here to call a family doctor at one’s home. Even if one had to go to a health centre, the service would be given on the same day. Not so in the UK, for example, where locals would have to wait up to a couple of weeks for an appointment and only emergencies are treated on the same day – and probably not at home.
Certainly, finding out about a health system is the last thing on many people’s minds when travelling to another country. If one is intending to travel for a few months or a few years, one has already many headaches like finding a house or apartment, schools for the children etc. If the EU is to become what it was intended to become – a zone in which all EU citizens can transfer for work opportunities, and not remain merely an opportunity zone for the younger generation only, then one has to cater for the transfer of families.
This is certainly not new. In research, for example, there are various schemes which provide for the transfer of researchers from one country to another. One fund, the Marie Curie, was set up to allow the transfer of those researchers who had less opportunity in their area of research in their locality, to transfer to more renowned centres. These funds catered for the transfer of one’s family and even, in some cases, schools.
But such opportunities may exist only within certain schemes. Certainly to ‘remove barriers’, one must make it as easy as, say, Americans transferring with their children and spouses from one state to another. One big obstacle which we find in Europe (but which Americans do not find) is primary health care – or in more lay terms, the family doctor (many may still refer to him/her as GP).
Imagine again travelling to Holland and once there, one’s daughter falls ill with gastritis. It would certainly be less of a headache if the system there was the same as in Malta. One would be given several telephone numbers and one simply calls the doctor. It may not be easy to find a system that works as efficiently and effectively as in Malta. I say this not because I am a local family doctor as well, but because it is the reality. For a mere five or seven euros one sees a GP in the office, perhaps after an hour’s wait. If one were to go to a GP in another country one certainly would spend 10 to 15 times as much. One appreciates what one has (or has left behind) when one does not have it any longer. Yet some form of harmonisation would be very convenient.
This agenda is being taken up locally by the Bioethics Research Programme of the Medical School at Mater Dei. Together with the Faculty of Medicine at the University of Maastricht, we hope to propose a project of study of this cross border primary care problem. There are several areas of concern which are all related to primary care. In the first instance what one considers emergencies are not always emergencies. A mother once told me (when we had introduced the system that after 5pm, health centres had to see only emergencies), that for her, a fever, or a mere sore throat of a two-year old was an emergency, especially when the media feeds the public signs to look out for and when they hear of other people’s experiences. Did not that baby with a sore throat end up in hospital with croup? Did not that rash turn out to be meningitis? Did not that fever reflect an appendix? Mothers can be very anxious. It is the family doctor’s job to reflect and decide who should be referred to hospital and who should be treated at home. It is also his or her job then to reassure the parents and give them some form of safety net if things get worse.
Other jobs of family doctors are preventive medicine, taking care of chronic conditions and giving other forms of social advice. Someone travelling to another State would be concerned about his or her hypertension or diabetes. Where are they to go for their follow-up visits; where do they get their treatment from; who are they to call in case of worry or an emergency? If one has a son who suffers from asthma or an allergy, one cannot rely solely on self-management. Although it is easy to call one’s doctor back home, when one is away for a long period of time, one needs a point of contact. Someone cannot simply turn up at an emergency every time something goes wrong. Conversely, while people get used to the primary care system as time passes, it would be much easier if systems were approximately the same.
Now there are various theories of EU integration. They vary from mere economic with no need for making systems uniform to theories, which allow for more coherent and integrated systems. Would it not be easy if my family doctor at home would simply ask me where I am going and through a computerised system find out the local family doctors and transfer my records electronically? That would be one headache, which can save lives, off one’s list. One can then dedicate more time to settle down at work and finding schools and where to live.
Whatever theory of EU integration one uses, the main concern is, at the end of the day, the facilitation of transfer of workers between states. Many directives have been written in this spirit. This includes, for example, the EU Directive on Data Protection which is not there to protect this fundamental right and freedom of the individual (privacy) but to facilitate the transfer of information (data) between EU States. It assumes that fundamental rights are protected within the framework of local laws. The same can be true when thinking of health. A directive for countries would indicate to member states what they should be after. This would not only, incidentally, bring more harmonisation for those who are travelling, but, as with other directives, would ensure that all EU citizens, would, at the end of the day, be receiving appropriate health care.
This is no easy matter. One would need to study the systems in all other States and take common denominators and see what the needs are to harmonise systems. Certainly the WHO stipulates that good primary health care systems are the key to an overall good health care system. We often go along with the wrong impression that a good hospital equates with a good health care system. This is wrong. A good hospital is just that, a good hospital. When the system is wrong, that good hospital is taxed to an extent that disallows it from functioning effectively and efficiently. We need not go far to understand this! The increased waiting time in our local hospital was, at least partially, identified with a weakness in our primary health care. Inappropriate referrals because local GPs do not have adequate facilities, or indeed self-referral by patients themselves, has led the department of health to call for GPs to work at the emergency department, to see patients who did not actually need to turn up at casualty.
This happens in many countries where general practice is not yet developed into an efficient system. Of course such a system would need the registration of patients with a family doctor; doctors need to be more organised to cover each other when they are off duty or on leave, or indeed sick; whether group practice or solo practice, one has to see that there is harmony within the system, and last but not least one has to ensure that all doctors working in the community are on the Specialist register and are equipped to deal with semi-emergencies, which would in turn relieve hospitals. Registration alone is not the answer. Registration brings with it organisation, without which it would simply not work.
While we are re-thinking our primary health care system, it would be wise to watch out for these developments. Certainly there are many other EU-funded projects dealing with this important area. We need to be able not only to handle EU citizens who come here; but to ensure that local people who seek opportunity within the EU continue to get optimal care and a family service. Our system is in need of a re-vamp. The tensions which have arisen lately are simply the result of an accumulation of problems which have been tackled poorly. It is also true that were it not for private GPs, no one in Malta would be able to answer the question, ‘who is your doctor?’, or to react to ‘take this to your doctor’. Health centres are made of excellent doctors working in a poor system, created in a communist period (polyclinics were introduced in Russia) which even they have largely purged.
Perhaps what is also in need of a re-vamp is the National Development Day which the Malta College of Family Doctors started when I was president, to bring all stakeholders together – we had doctors from all sectors, ministers, and others – to discuss where we want to go over the next 10 to 20 years. It started by people being weary that their turf needs protection. But change will bring about benefits besides the sacrifices. Experience in other areas has shown that the benefits always outweigh the sacrifices. In re-thinking our primary system, however we may wish to look at the future of the EU as well and keep ourselves posted on this issue.
Pierre Mallia is Associate Professor in Family Medicine, Patients’ Rights and Bioethics at the University of Malta; he is also Ethics Advisor to the Medical Council of Malta.
http://www.independent.com.mt
There are a number of EU directives which apply to the rights of EU citizens to receive medical health care when outside their country but within the European Union. This applies mostly to emergency treatment and has also proved of benefit to those who cannot receive a procedure, for example, within their country of origin either due to lack of the service or merely because of undue prolonged waiting. Yet the EU was set up as an economic zone and therefore includes the facilitation of transfer of workers between EU states.
When it comes to transfer of workers, especially those travelling with their family, primary health becomes all the more important. EU states differ considerably between themselves on the type of service they offer. Some are mostly state-based; others insurance based. Certainly if one is to travel to another country, say Holland, with one’s family, it is a concern, if not a headache, to consider what kind of health services are offered for day-to-day ailments which necessitate the calling of a doctor. In Malta one may be used to call one’s GP at home and get prompt service. But this is a private service which is not, by right, entitled to other EU citizens. They would have to pay for it. Considering the small fee local family doctors charge, it is worth the while of any EU citizen travelling here to call a family doctor at one’s home. Even if one had to go to a health centre, the service would be given on the same day. Not so in the UK, for example, where locals would have to wait up to a couple of weeks for an appointment and only emergencies are treated on the same day – and probably not at home.
Certainly, finding out about a health system is the last thing on many people’s minds when travelling to another country. If one is intending to travel for a few months or a few years, one has already many headaches like finding a house or apartment, schools for the children etc. If the EU is to become what it was intended to become – a zone in which all EU citizens can transfer for work opportunities, and not remain merely an opportunity zone for the younger generation only, then one has to cater for the transfer of families.
This is certainly not new. In research, for example, there are various schemes which provide for the transfer of researchers from one country to another. One fund, the Marie Curie, was set up to allow the transfer of those researchers who had less opportunity in their area of research in their locality, to transfer to more renowned centres. These funds catered for the transfer of one’s family and even, in some cases, schools.
But such opportunities may exist only within certain schemes. Certainly to ‘remove barriers’, one must make it as easy as, say, Americans transferring with their children and spouses from one state to another. One big obstacle which we find in Europe (but which Americans do not find) is primary health care – or in more lay terms, the family doctor (many may still refer to him/her as GP).
Imagine again travelling to Holland and once there, one’s daughter falls ill with gastritis. It would certainly be less of a headache if the system there was the same as in Malta. One would be given several telephone numbers and one simply calls the doctor. It may not be easy to find a system that works as efficiently and effectively as in Malta. I say this not because I am a local family doctor as well, but because it is the reality. For a mere five or seven euros one sees a GP in the office, perhaps after an hour’s wait. If one were to go to a GP in another country one certainly would spend 10 to 15 times as much. One appreciates what one has (or has left behind) when one does not have it any longer. Yet some form of harmonisation would be very convenient.
This agenda is being taken up locally by the Bioethics Research Programme of the Medical School at Mater Dei. Together with the Faculty of Medicine at the University of Maastricht, we hope to propose a project of study of this cross border primary care problem. There are several areas of concern which are all related to primary care. In the first instance what one considers emergencies are not always emergencies. A mother once told me (when we had introduced the system that after 5pm, health centres had to see only emergencies), that for her, a fever, or a mere sore throat of a two-year old was an emergency, especially when the media feeds the public signs to look out for and when they hear of other people’s experiences. Did not that baby with a sore throat end up in hospital with croup? Did not that rash turn out to be meningitis? Did not that fever reflect an appendix? Mothers can be very anxious. It is the family doctor’s job to reflect and decide who should be referred to hospital and who should be treated at home. It is also his or her job then to reassure the parents and give them some form of safety net if things get worse.
Other jobs of family doctors are preventive medicine, taking care of chronic conditions and giving other forms of social advice. Someone travelling to another State would be concerned about his or her hypertension or diabetes. Where are they to go for their follow-up visits; where do they get their treatment from; who are they to call in case of worry or an emergency? If one has a son who suffers from asthma or an allergy, one cannot rely solely on self-management. Although it is easy to call one’s doctor back home, when one is away for a long period of time, one needs a point of contact. Someone cannot simply turn up at an emergency every time something goes wrong. Conversely, while people get used to the primary care system as time passes, it would be much easier if systems were approximately the same.
Now there are various theories of EU integration. They vary from mere economic with no need for making systems uniform to theories, which allow for more coherent and integrated systems. Would it not be easy if my family doctor at home would simply ask me where I am going and through a computerised system find out the local family doctors and transfer my records electronically? That would be one headache, which can save lives, off one’s list. One can then dedicate more time to settle down at work and finding schools and where to live.
Whatever theory of EU integration one uses, the main concern is, at the end of the day, the facilitation of transfer of workers between states. Many directives have been written in this spirit. This includes, for example, the EU Directive on Data Protection which is not there to protect this fundamental right and freedom of the individual (privacy) but to facilitate the transfer of information (data) between EU States. It assumes that fundamental rights are protected within the framework of local laws. The same can be true when thinking of health. A directive for countries would indicate to member states what they should be after. This would not only, incidentally, bring more harmonisation for those who are travelling, but, as with other directives, would ensure that all EU citizens, would, at the end of the day, be receiving appropriate health care.
This is no easy matter. One would need to study the systems in all other States and take common denominators and see what the needs are to harmonise systems. Certainly the WHO stipulates that good primary health care systems are the key to an overall good health care system. We often go along with the wrong impression that a good hospital equates with a good health care system. This is wrong. A good hospital is just that, a good hospital. When the system is wrong, that good hospital is taxed to an extent that disallows it from functioning effectively and efficiently. We need not go far to understand this! The increased waiting time in our local hospital was, at least partially, identified with a weakness in our primary health care. Inappropriate referrals because local GPs do not have adequate facilities, or indeed self-referral by patients themselves, has led the department of health to call for GPs to work at the emergency department, to see patients who did not actually need to turn up at casualty.
This happens in many countries where general practice is not yet developed into an efficient system. Of course such a system would need the registration of patients with a family doctor; doctors need to be more organised to cover each other when they are off duty or on leave, or indeed sick; whether group practice or solo practice, one has to see that there is harmony within the system, and last but not least one has to ensure that all doctors working in the community are on the Specialist register and are equipped to deal with semi-emergencies, which would in turn relieve hospitals. Registration alone is not the answer. Registration brings with it organisation, without which it would simply not work.
While we are re-thinking our primary health care system, it would be wise to watch out for these developments. Certainly there are many other EU-funded projects dealing with this important area. We need to be able not only to handle EU citizens who come here; but to ensure that local people who seek opportunity within the EU continue to get optimal care and a family service. Our system is in need of a re-vamp. The tensions which have arisen lately are simply the result of an accumulation of problems which have been tackled poorly. It is also true that were it not for private GPs, no one in Malta would be able to answer the question, ‘who is your doctor?’, or to react to ‘take this to your doctor’. Health centres are made of excellent doctors working in a poor system, created in a communist period (polyclinics were introduced in Russia) which even they have largely purged.
Perhaps what is also in need of a re-vamp is the National Development Day which the Malta College of Family Doctors started when I was president, to bring all stakeholders together – we had doctors from all sectors, ministers, and others – to discuss where we want to go over the next 10 to 20 years. It started by people being weary that their turf needs protection. But change will bring about benefits besides the sacrifices. Experience in other areas has shown that the benefits always outweigh the sacrifices. In re-thinking our primary system, however we may wish to look at the future of the EU as well and keep ourselves posted on this issue.
Pierre Mallia is Associate Professor in Family Medicine, Patients’ Rights and Bioethics at the University of Malta; he is also Ethics Advisor to the Medical Council of Malta.
http://www.independent.com.mt
miércoles, 22 de abril de 2009
Les « déclarations éthiques de renonciation »mettent en péril le principe de solidarité de l'assurance-maladie
Les « déclarations éthiques de renonciation »
mettent en péril le principe de solidarité de l'assurance-maladie
Prise de position N° 12/2006
Commission nationale d’éthique pour la médecine humaine
Office fédéral de la santé publique 3003 Berne
Tél.: +41 (31) 324 02 36 Fax: +41 (31) 322 62 33
nek-cne@bag.admin.ch
www.nek-cne.ch
2
Les contrats spéciaux prévoyant que l’assuré renonce, pour des motifs moraux,
à des prestations couvertes par l’assurance de base, comme l’interruption de
grossesse, minent le principe de solidarité. Une désolidarisation récompensée
financièrement ne peut pas être éthique. Les déclarations de renonciation
donnent une image erronée de la situation et exercent une pression sur
l’assuré. La Commission nationale d'éthique recommande au législateur
d'examiner si la renonciation à des prestations de base est en contradiction
avec la loi sur l'assurance-maladie (LAMal).
En Suisse, certaines associations proposent des contrats spéciaux avec des caissesmaladie
qui accordent des réductions de primes contre la renonciation à certaines
prestations considérées comme étant condamnables du point de vue moral. Parmi elles
figurent l’interruption de grossesse, les méthodes invasives de diagnostic prénatal
comme l’amniocentèse ou le prélèvement de villosités choriales, la fécondation in vitro ou
la thérapie de substitution de la drogue par la méthadone.
1 Des réductions pour la renonciation volontaire à des prestations de l’assurancemaladie
de base et complémentaire
La commission a eu connaissance de deux modèles différents. Le premier ne prévoit de
réductions que sur l'assurance complémentaire ; la prime de l'assurance de base reste
inchangée. Le deuxième modèle prévoit également une renonciation à des prestations et
même, en cas de besoin, au remboursement de celles liées à une interruption de
grossesse - obligatoirement couverte par l'assurance de base. Par là, il est suggéré que
l’assurance de base ne finance pas les interruptions de grossesse. Dans les deux cas, la
personne assurée doit signer une déclaration de renonciation.
Pour les caisses-maladie également, ces modèles sont intéressants sur le plan financier.
L’avantage pour elles pourrait être l’augmentation du taux de jeunes assurés ou encore la
fidélisation des assurés par un contrat collectif, plus facile à gérer.
2 Les déclarations éthiques de renonciation créent un collectif moral à part
Pour les deux modèles, le contact avec les assurés est noué par une association prônant
une idéologie relevant du « droit à la vie ». Les assurés sont supposés être d’abord
motivés par des considérations morales. « Réduire les primes, tout en faisant une bonne
action », lit-on sur la déclaration de renonciation de l’Aide suisse pour la mère et l’enfant.
L’association va même jusqu’à l’intituler « Déclaration éthique de renonciation ». Les
déclarations correspondantes de Pro Life s’adressent à des personnes « ayant pour but
principal de protéger la vie dans toutes ses phases » et opposées à l’avortement, celui-ci
étant décrit comme « homicide ». Le système repose sur la répugnance des adversaires
de l’avortement, simple à comprendre et motivée par des considérations morales, de
devoir co-financer, par leurs primes d’assurance et de manière collective, les
interruptions de grossesse. La formule proposée implique la formation d’un collectif moral
à part et constitue un contrat spécial portant sur l’assurance de base qui exclut la
prestation rejetée.
3
3 La solidarité est refusée à ceux qui pensent différemment
La Commission nationale d’éthique exprime sa préoccupation face à ce genre de contrats
qui impliquent des renonciations à des prestations pour des motifs moraux parce qu’ils
sapent le principe de la solidarité. Il s’agit d'une pratique de désolidarisation - en partie
déguisée - qui est en contradiction avec les bases éthiques prônées par le système
sanitaire suisse. Ceux qui ne veulent pas recourir à la prestation en question se
regroupent et peuvent obtenir une réduction correspondante de leurs primes
d’assurance. Les autres, qui n’y renoncent pas, restent affiliés dans le « pool ». Les
coûts, répartis sur un nombre plus petit d’individus, augmentent inévitablement. Se
fondant sur leurs convictions morales, les personnes qui renoncent à la prestation
refusent de coopérer avec la communauté et se désolidarisent de ceux qui pensent
différemment. Ils regroupent les « bons » assurés et discriminent les « mauvais », qui se
voient refuser la réduction parce qu'ils ont une autre conception morale. Si la solidarité
est censée être une valeur essentielle de la santé publique, on ne peut appeler
« éthiques » de tels contrats.
La différenciation de groupes d’assurés en fonction de leurs convictions morales est une
atteinte inadmissible à la sphère privée des assurés par le système de santé. Selon la
commission, une conviction morale de devrait en aucun cas être un argument valide pour
obtenir des réductions de la part des caisses-maladie. Inversement, les règles de la
solidarité financière ne sauraient être enfreintes en raison d’une condamnation morale.
Cette différenciation est, en outre, contestable car elle pourrait mener à ce que le
principe de l’exception s’étende au détriment de la solidarité de la communauté. Les nonfumeurs
pourraient se mobiliser contre les fumeurs, les adversaires de la transplantation
d’organes contre les partisans de cette intervention, les défenseurs de la médecine
alternative contre les patients traités par la médecine classique, les sportifs contre les
sédentaires et, finalement, les hommes contre les femmes, les jeunes contre les aînés.
Les centres de fitness pourraient faire de la publicité en proposant des contrats collectifs
moins chers. Alors, les plus démunis seraient peut-être obligés de souscrire des contrats
abordables pour eux, mais qui les privent d’une partie des prestations médicales de base.
Pour cette raison également, ces contrats ne méritent pas l'attribut « éthique ». La
désolidarisation est la mauvaise piste pour enrayer l'augmentation des coûts.
4 L’information sur la renonciation doit être complète
Il y a lieu de douter que les assurés démarchés ont vraiment bénéficié d'une information
équitable et transparente. L'Aide suisse pour la mère et l'enfant écrit, certes, sur son site
« Si, malgré la signature de la renonciation, quelqu’un voulait profiter de certaines
prestations, il lui est tout à fait possible de se retirer du contrat collectif ». Mais les
déclarations de renonciation demandent (dans les deux modèles) que l’on se déclare prêt
à payer soi-même la totalité des coûts si l’on devait, malgré tout, avoir besoin des
prestations en question. Les assurés sont laissés dans l'ignorance du droit effectivement
applicable dans ces cas. En réalité, la caisse en question doit quand même rembourser
l'interruption de grossesse parce que cette intervention est inscrite au catalogue des
prestations de base, conformément à la loi sur l'assurance-maladie. Un simple avis de
révocation suffirait1, et un changement de caisse ne serait pas nécessaire. En effet, la
femme qui en serait concernée ne devrait pas financer elle-même l’interruption de
grossesse. Mais ce fait est passé sous silence. Au contraire, les femmes sont soumises à
la crainte de graves conséquences financières si elles décidaient d’interrompre une
grossesse non désirée.
1 Art. 23, al. 1, Loi fédérale sur la partie générale du droit des assurances sociales, RS 830.1
« L’ayant droit peut renoncer à des prestations qui lui sont dues. La renonciation peut être en tout temps
révoquée pour l’avenir. La renonciation et la révocation font l’objet d’une déclaration écrite. »
4
5 Les enfants ne devraient pas être poussés à des déclarations de renonciation
Sur son site Internet, Pro Life utilise comme argument publicitaire2 que l’avortement et
les coûts qui en résultent pourraient atteindre un montant à six chiffres et qu’il serait une
cause supplémentaire de la constante augmentation des primes. On implique par là qu’un
nombre croissant d’interruptions de grossesse fait grimper les primes, ce qui n’est pas
vrai. De plus, les déclarations de renonciation contiennent des éléments contraires au
principe du consentement éclairé : celle émise par l’Aide suisse pour la mère et l'enfant
invite les garçons et les filles à partir de 13 ans d’y souscrire. La déclaration de Pro Life
contient l’obligation de demander à ses propres enfants de la signer également dès qu’ils
atteignent l’âge de 16 ans. Si ces mesures augmentent efficacement le nombre de
membres, elles ne permettent pas une décision libre.
Il faut également se demander si ces contrats spéciaux répondent vraiment aux principes
éthiques des groupes qui prônent ces déclarations de renonciation. Car ici, il n’est pas
seulement question de refuser l’interruption de grossesse en soi, mais de se séparer de
la communauté solidaire qui doit protéger des conséquences financières une femme
ayant une grossesse indésirée ou un toxicomane qui doit être traité à la méthadone. En
tout cas, cette démarche ne répond pas à l’esprit du droit de l'assurance maladie, qui
mise sur la solidarité pour le catalogue des prestations médicales de base.
6 Recommandations sur la situation juridique
Les déclarations de renonciation relèvent de l’application de l’art. 23 de la loi fédérale sur
la partie générale du droit des assurances sociales. La commission relève qu’une
renonciation à une prestation est fondamentalement prévue dans la loi fédérale. Mais ce
principe général n’a pas été posé en vue d’autoriser des renonciations aux prestations de
l’assurance de base. Son application à l’assurance de base met en péril le principe de
solidarité et, par-là, les bases mêmes de l’assurance-maladie. Pour prévenir pareille
situation, la loi devrait exclure la renonciation volontaire à des prestations de l’assurance
de base.
mettent en péril le principe de solidarité de l'assurance-maladie
Prise de position N° 12/2006
Commission nationale d’éthique pour la médecine humaine
Office fédéral de la santé publique 3003 Berne
Tél.: +41 (31) 324 02 36 Fax: +41 (31) 322 62 33
nek-cne@bag.admin.ch
www.nek-cne.ch
2
Les contrats spéciaux prévoyant que l’assuré renonce, pour des motifs moraux,
à des prestations couvertes par l’assurance de base, comme l’interruption de
grossesse, minent le principe de solidarité. Une désolidarisation récompensée
financièrement ne peut pas être éthique. Les déclarations de renonciation
donnent une image erronée de la situation et exercent une pression sur
l’assuré. La Commission nationale d'éthique recommande au législateur
d'examiner si la renonciation à des prestations de base est en contradiction
avec la loi sur l'assurance-maladie (LAMal).
En Suisse, certaines associations proposent des contrats spéciaux avec des caissesmaladie
qui accordent des réductions de primes contre la renonciation à certaines
prestations considérées comme étant condamnables du point de vue moral. Parmi elles
figurent l’interruption de grossesse, les méthodes invasives de diagnostic prénatal
comme l’amniocentèse ou le prélèvement de villosités choriales, la fécondation in vitro ou
la thérapie de substitution de la drogue par la méthadone.
1 Des réductions pour la renonciation volontaire à des prestations de l’assurancemaladie
de base et complémentaire
La commission a eu connaissance de deux modèles différents. Le premier ne prévoit de
réductions que sur l'assurance complémentaire ; la prime de l'assurance de base reste
inchangée. Le deuxième modèle prévoit également une renonciation à des prestations et
même, en cas de besoin, au remboursement de celles liées à une interruption de
grossesse - obligatoirement couverte par l'assurance de base. Par là, il est suggéré que
l’assurance de base ne finance pas les interruptions de grossesse. Dans les deux cas, la
personne assurée doit signer une déclaration de renonciation.
Pour les caisses-maladie également, ces modèles sont intéressants sur le plan financier.
L’avantage pour elles pourrait être l’augmentation du taux de jeunes assurés ou encore la
fidélisation des assurés par un contrat collectif, plus facile à gérer.
2 Les déclarations éthiques de renonciation créent un collectif moral à part
Pour les deux modèles, le contact avec les assurés est noué par une association prônant
une idéologie relevant du « droit à la vie ». Les assurés sont supposés être d’abord
motivés par des considérations morales. « Réduire les primes, tout en faisant une bonne
action », lit-on sur la déclaration de renonciation de l’Aide suisse pour la mère et l’enfant.
L’association va même jusqu’à l’intituler « Déclaration éthique de renonciation ». Les
déclarations correspondantes de Pro Life s’adressent à des personnes « ayant pour but
principal de protéger la vie dans toutes ses phases » et opposées à l’avortement, celui-ci
étant décrit comme « homicide ». Le système repose sur la répugnance des adversaires
de l’avortement, simple à comprendre et motivée par des considérations morales, de
devoir co-financer, par leurs primes d’assurance et de manière collective, les
interruptions de grossesse. La formule proposée implique la formation d’un collectif moral
à part et constitue un contrat spécial portant sur l’assurance de base qui exclut la
prestation rejetée.
3
3 La solidarité est refusée à ceux qui pensent différemment
La Commission nationale d’éthique exprime sa préoccupation face à ce genre de contrats
qui impliquent des renonciations à des prestations pour des motifs moraux parce qu’ils
sapent le principe de la solidarité. Il s’agit d'une pratique de désolidarisation - en partie
déguisée - qui est en contradiction avec les bases éthiques prônées par le système
sanitaire suisse. Ceux qui ne veulent pas recourir à la prestation en question se
regroupent et peuvent obtenir une réduction correspondante de leurs primes
d’assurance. Les autres, qui n’y renoncent pas, restent affiliés dans le « pool ». Les
coûts, répartis sur un nombre plus petit d’individus, augmentent inévitablement. Se
fondant sur leurs convictions morales, les personnes qui renoncent à la prestation
refusent de coopérer avec la communauté et se désolidarisent de ceux qui pensent
différemment. Ils regroupent les « bons » assurés et discriminent les « mauvais », qui se
voient refuser la réduction parce qu'ils ont une autre conception morale. Si la solidarité
est censée être une valeur essentielle de la santé publique, on ne peut appeler
« éthiques » de tels contrats.
La différenciation de groupes d’assurés en fonction de leurs convictions morales est une
atteinte inadmissible à la sphère privée des assurés par le système de santé. Selon la
commission, une conviction morale de devrait en aucun cas être un argument valide pour
obtenir des réductions de la part des caisses-maladie. Inversement, les règles de la
solidarité financière ne sauraient être enfreintes en raison d’une condamnation morale.
Cette différenciation est, en outre, contestable car elle pourrait mener à ce que le
principe de l’exception s’étende au détriment de la solidarité de la communauté. Les nonfumeurs
pourraient se mobiliser contre les fumeurs, les adversaires de la transplantation
d’organes contre les partisans de cette intervention, les défenseurs de la médecine
alternative contre les patients traités par la médecine classique, les sportifs contre les
sédentaires et, finalement, les hommes contre les femmes, les jeunes contre les aînés.
Les centres de fitness pourraient faire de la publicité en proposant des contrats collectifs
moins chers. Alors, les plus démunis seraient peut-être obligés de souscrire des contrats
abordables pour eux, mais qui les privent d’une partie des prestations médicales de base.
Pour cette raison également, ces contrats ne méritent pas l'attribut « éthique ». La
désolidarisation est la mauvaise piste pour enrayer l'augmentation des coûts.
4 L’information sur la renonciation doit être complète
Il y a lieu de douter que les assurés démarchés ont vraiment bénéficié d'une information
équitable et transparente. L'Aide suisse pour la mère et l'enfant écrit, certes, sur son site
« Si, malgré la signature de la renonciation, quelqu’un voulait profiter de certaines
prestations, il lui est tout à fait possible de se retirer du contrat collectif ». Mais les
déclarations de renonciation demandent (dans les deux modèles) que l’on se déclare prêt
à payer soi-même la totalité des coûts si l’on devait, malgré tout, avoir besoin des
prestations en question. Les assurés sont laissés dans l'ignorance du droit effectivement
applicable dans ces cas. En réalité, la caisse en question doit quand même rembourser
l'interruption de grossesse parce que cette intervention est inscrite au catalogue des
prestations de base, conformément à la loi sur l'assurance-maladie. Un simple avis de
révocation suffirait1, et un changement de caisse ne serait pas nécessaire. En effet, la
femme qui en serait concernée ne devrait pas financer elle-même l’interruption de
grossesse. Mais ce fait est passé sous silence. Au contraire, les femmes sont soumises à
la crainte de graves conséquences financières si elles décidaient d’interrompre une
grossesse non désirée.
1 Art. 23, al. 1, Loi fédérale sur la partie générale du droit des assurances sociales, RS 830.1
« L’ayant droit peut renoncer à des prestations qui lui sont dues. La renonciation peut être en tout temps
révoquée pour l’avenir. La renonciation et la révocation font l’objet d’une déclaration écrite. »
4
5 Les enfants ne devraient pas être poussés à des déclarations de renonciation
Sur son site Internet, Pro Life utilise comme argument publicitaire2 que l’avortement et
les coûts qui en résultent pourraient atteindre un montant à six chiffres et qu’il serait une
cause supplémentaire de la constante augmentation des primes. On implique par là qu’un
nombre croissant d’interruptions de grossesse fait grimper les primes, ce qui n’est pas
vrai. De plus, les déclarations de renonciation contiennent des éléments contraires au
principe du consentement éclairé : celle émise par l’Aide suisse pour la mère et l'enfant
invite les garçons et les filles à partir de 13 ans d’y souscrire. La déclaration de Pro Life
contient l’obligation de demander à ses propres enfants de la signer également dès qu’ils
atteignent l’âge de 16 ans. Si ces mesures augmentent efficacement le nombre de
membres, elles ne permettent pas une décision libre.
Il faut également se demander si ces contrats spéciaux répondent vraiment aux principes
éthiques des groupes qui prônent ces déclarations de renonciation. Car ici, il n’est pas
seulement question de refuser l’interruption de grossesse en soi, mais de se séparer de
la communauté solidaire qui doit protéger des conséquences financières une femme
ayant une grossesse indésirée ou un toxicomane qui doit être traité à la méthadone. En
tout cas, cette démarche ne répond pas à l’esprit du droit de l'assurance maladie, qui
mise sur la solidarité pour le catalogue des prestations médicales de base.
6 Recommandations sur la situation juridique
Les déclarations de renonciation relèvent de l’application de l’art. 23 de la loi fédérale sur
la partie générale du droit des assurances sociales. La commission relève qu’une
renonciation à une prestation est fondamentalement prévue dans la loi fédérale. Mais ce
principe général n’a pas été posé en vue d’autoriser des renonciations aux prestations de
l’assurance de base. Son application à l’assurance de base met en péril le principe de
solidarité et, par-là, les bases mêmes de l’assurance-maladie. Pour prévenir pareille
situation, la loi devrait exclure la renonciation volontaire à des prestations de l’assurance
de base.
sábado, 18 de abril de 2009
INFORMACIÓN GENÉTICA Y SEGUROS DE ASISTENCIA SANITARIA
INFORMACIÓN GENÉTICA Y SEGUROS DE ASISTENCIA SANITARIA
“El desarrollo de una información biomédica más precisa podría hacer que la
situación sanitaria empeorara en lugar de mejorar –dice Thomas H. Murray (1994, pp. 13-
16)– como consecuencia de la transformación de la medicina al hacer disponible cada vez
mayores volúmenes de información sobre el riesgo. Este acrecentamiento de la información
sobre los riesgos genéticos en el actual sistema de asistencia sanitaria podría ocasionar el
riesgo de un sistema de calificación aún más refinado por parte de las aseguradoras y una
creciente dificultad para encontrar asistencia sanitaria a un precio asequible para un gran
número de personas. La información útil para predecir la probabilidad de que un individuo
desarrolle enfermedades concretas abre la puerta, entonces, tanto a estrategias de
prevención, como a la desagradable posibilidad de la discriminación genética, la cual podría
alcanzar a los hijos, padres, hermanos y demás familiares de una persona”.
Según Murray (pp. 14-15), es poco probable que tenga éxito el planteamiento en el
sentido de que se proporcione una protección especial a la información genética. Una política
con este fin tendrá que ir dirigida a la intimidad de la información relacionada con la salud en
general, incluidos los historiales clínicos y, por lo tanto, hacia un nuevo programa legislativo.
Coincidiendo con Murray en que “éste es el ámbito en que los frutos del cartografiado
del genoma parece que vayan a tener efectos más directos (y quizás negativos) en la vida de
la mayoría de la gente”, Alexander M. Capron (1994, p. 18) sugiere que “en las primeras
fases del proyecto de cartografiado del genoma pudiera ser adecuado establecer una
moratoria en relación con la utilización de los factores genéticos para la tarificación y la
selección de riesgos hasta que dispongamos de datos más completos y un mejor conocimiento
de su verdadero significado respecto de la vida de la gente y su estado de salud, junto con un
debate más abierto de los fines de los seguros y del grado de compatibilidad con la selección
de riesgo” (p. 25).
BIOTECNOLOGÍA GENÉTICA EN EL SER HUMANO Y DERECHO,EXTRACTO DEL INFORME.
Estudio elaborado por Fernando Arrau Corominas
http://www.explora.cl/otros/Xsemana/concursos/actividad/region4/coquimbo/miWeb29/pdf_archivos/biotechumana.pdf
“El desarrollo de una información biomédica más precisa podría hacer que la
situación sanitaria empeorara en lugar de mejorar –dice Thomas H. Murray (1994, pp. 13-
16)– como consecuencia de la transformación de la medicina al hacer disponible cada vez
mayores volúmenes de información sobre el riesgo. Este acrecentamiento de la información
sobre los riesgos genéticos en el actual sistema de asistencia sanitaria podría ocasionar el
riesgo de un sistema de calificación aún más refinado por parte de las aseguradoras y una
creciente dificultad para encontrar asistencia sanitaria a un precio asequible para un gran
número de personas. La información útil para predecir la probabilidad de que un individuo
desarrolle enfermedades concretas abre la puerta, entonces, tanto a estrategias de
prevención, como a la desagradable posibilidad de la discriminación genética, la cual podría
alcanzar a los hijos, padres, hermanos y demás familiares de una persona”.
Según Murray (pp. 14-15), es poco probable que tenga éxito el planteamiento en el
sentido de que se proporcione una protección especial a la información genética. Una política
con este fin tendrá que ir dirigida a la intimidad de la información relacionada con la salud en
general, incluidos los historiales clínicos y, por lo tanto, hacia un nuevo programa legislativo.
Coincidiendo con Murray en que “éste es el ámbito en que los frutos del cartografiado
del genoma parece que vayan a tener efectos más directos (y quizás negativos) en la vida de
la mayoría de la gente”, Alexander M. Capron (1994, p. 18) sugiere que “en las primeras
fases del proyecto de cartografiado del genoma pudiera ser adecuado establecer una
moratoria en relación con la utilización de los factores genéticos para la tarificación y la
selección de riesgos hasta que dispongamos de datos más completos y un mejor conocimiento
de su verdadero significado respecto de la vida de la gente y su estado de salud, junto con un
debate más abierto de los fines de los seguros y del grado de compatibilidad con la selección
de riesgo” (p. 25).
BIOTECNOLOGÍA GENÉTICA EN EL SER HUMANO Y DERECHO,EXTRACTO DEL INFORME.
Estudio elaborado por Fernando Arrau Corominas
http://www.explora.cl/otros/Xsemana/concursos/actividad/region4/coquimbo/miWeb29/pdf_archivos/biotechumana.pdf
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