Published in Health and Ageing Newsletter No. 28, April 2013
nvited Article II
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Moving beyond Public Fear of Genetic Discrimination
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by Lidewij Henneman and Ine Van Hoyweghen
Public attitudes towards genetic testing
Due to the rapid developments in genetics and genomics, the number of diseases for which genetic
testing is available has increased sharply,
1
in particular for predictive tests, which provide information
about the risk of developing a disease. Understanding people’s attitudes and beliefs towards genetic
testing may help guide communication efforts by exposing misunderstandings, and to establish genetic
services that are accepted by the public and in accordance with people’s needs.
Public attitudes towards genetic testing are generally positive (Condit 2010; Henneman et al., 2012),
even for diseases with limited clinical utility of testing, for example testing for psychiatric disorders
(Wilde et al., 2010). It has also been shown that a higher level of education is associated with more
knowledge about genetics and a stronger belief in the benefits of genetic testing (Rose et al., 2005).
The relationship between knowledge and support of testing is, however, not entirely straightforward, as
more detailed information on the application of genetic tests may also result in more concern and
ambivalence (Wilde et al., 2010).
Genetic testing and the fear of genetic discrimination
People’s main concerns about genetic testing relate to confidentiality (access to data, storage), privacy
and discrimination issues (e.g. Henneman et al., 2006). In private insurance, for example, because of
the obligation to full disclosure of relevant information, people fear that genetic testing may render
individuals uninsurable. The term “genetic discrimination” (GD) has been coined to refer to the
(negative) perceived differential treatment of individuals or their family members based on presumed or
actual genetic differences rather than physical characteristics (Otlowski et al., 2012). In general, fear of
GD may be explained by two broader mechanisms in social perceptions of genetics; first, the belief that
it is our genes, and only our genes that “make us who we are” (genetic determinism), and second, the
belief that genetic information is special, powerful (potentially dangerous), and therefore (must be)
treated differently (genetic exceptionalism). However, predictivity in medicine clearly is not only based
on genetics, and other risk factors may be (even more) important such as family history, past history of
disease and lifestyle factors.
Public fear of GD may potentially lead to a decline in genetic tests, refusal to participate in scientific
research, discouragement to disclose test results to health-care providers/relatives, and more interest in
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Senior researcher at the EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam.
Assistant professor at the Department of Health, Ethics & Society (HES), CAPHRI, Faculty of Health, Medicine and
Life Sciences (FHML), Maastricht University. Both researchers are affiliated to the CSG Centre for Society and the
Life Sciences (www.society-lifesciences.nl).
1
See www.ncbi.nlm.nih.gov/projects/GeneTests/static/whatsnew/labdirgrowth.shtml
The Geneva Associati
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direct-to-consumer genetic testing (e.g. Allain et al., 2012; Geelen et al., 2012). To manage these
concerns, policymakers and lawmakers have taken measures to “prevent” GD. In Europe, the Council
of Europe’s “Oviedo Convention of Human Rights and Biomedicine” has clearly set the tone by
prohibiting any form of discrimination against a person on grounds of his or her genetic heritage, and
restricting the use of genetic tests to health purposes or scientific research.
2
Since the 1990s, a
substantial number of European countries have enacted genetic non-discrimination regulations (Van
Hoyweghen and Horstman, 2008). In the United States, the Genetic Information Nondiscrimination Act
(GINA) was signed into law in 2008 to provide protection against GD for employment and health
insurance.
3
These regulations should help alleviate public fear of GD, enabling the progress of genetic
research and use of genetics in clinical and preventive care.
Despite these protective regulations against GD, many people (still) fear the use of genetic information
by third parties (e.g. insurance, employers), and fear that insurance may not be available (Allain et al.,
2012). A few attempts have been made to unravel the origins and backgrounds of fear of GD. It has
been suggested that fear of GD may arise from preceding experiences of discrimination within families
living with disease (Geelen et al., 2012). These “family (hi)stories”, encompassing shared experiences
of discrimination and of “being a member of an affected family”, seem to affect the way family members
decide to undergo or refrain from genetic testing. Furthermore, fears of GD seem to resonate with
broader experiences of stigmatisation in living as a family with disease (Geelen et al., 2012). This refers
to more diffuse verdicts of social unworthiness, prejudice and stereotypes towards these families, and
to the role of more “indirect” forms of discrimination and broader experiences of stigmatisation. This
highlights the need to pay special attention to the everyday experiences that limit choices and options
available to persons or families “at-risk”.
In practice, however, there is little evidence on actual GD by insurance companies. Research that
validates the claim that GD is occurring has been limited, both in scope and design. Reports of GD
have been criticised for being anecdotal, subjective experiences of problems, and allegations of
discrimination have usually been based on the presence of disease in contrast to genetic
predisposition. Most “incidents” that have been reported seem to relate to life insurance and predictive
testing for neurological disorders (e.g. Otlowski et al., 2012). A recent review has shown that with the
notable exception of studies on Huntington’s disease, none of the studies that brought irrefutable
evidence of a systemic problem of GD that would yield a highly negative societal impact (Joly et al.,
2013).
How to address public concerns about genetic discrimination?
The above findings demonstrate that addressing public concerns about genetic discrimination (GD) is
not entirely straightforward. Despite the lack of irrefutable evidence of GD by insurers, people fear the
use of genetic testing in insurance practice. Moreover, the regulatory actions that have been deployed
by European and national policy makers seem not to have alleviated these fears. Although a recent
study among the Dutch public has shown that, compared to ten years ago, worries among the general
public about premium differentiation by insurance companies have decreased (Henneman et al., 2012),
it is still one of the most important concerns that people considering genetic testing have.
More research is urgently needed on the gap between fears of GD and installed policy approaches—
such as genetics-specific regulations in insurance. Moreover, there is a noticeable lack of empirical
research on evidence of GD in a European context. This implies a multi -disciplinary approach to tackle
the problem of GD in Europe, with empirical research on different aspects: on everyday experiences of
people and families with discrimination (“lifeworld”), on policy approaches on a national and
supranational level (“law”), and on insurance practices of appropriating genetic information
(“insurance”).
To effectively address public/patient concerns, community and clinical education is needed, for
example, using (social) media campaigns or through patient and consumer organisations. A recent
study in the U.S. showed that only about half of the patients who were counselled on genetic testing for
hereditary breast cancer reported that genetic discrimination was discussed either before or after
testing (Allain et al., 2012). Since health-care providers are important resources for patients, educating
and increasing awareness among professionals seems warranted.
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See conventions.coe.int/Treaty/en/Treaties/Html/164.htm
3
See www.govtrack.us/congress/bills/110/hr493/tex
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In conclusion, given the gap between, on the one hand, the lack of evidence of GD and installed
regulations, and, on the other hand, remaining fears of GD, it is important also to focus on people’s
everyday experiences with discrimination. The philosopher Husserl (1936) documented the gap
between scientific explanations and everyday worlds of experience, referring to the notion of the “life
world”. In the context of fears of GD, this implies focusing less on information provision of genetic non-discrimination regulations, and more on the role of family dynamics and individual experiences to cope
with the social consequences of living with disease. This implies creating spaces for people’s everyday
experience and integrating it as experiential evidence as a form of public engagement with the issue.
Acknowledging the way GD “connects” with broader “family histories” and with more indirect
experiences with discrimination and stigmatisation may be an important factor in realising the potentials
of genetic testing in European societies.
Given recent actions of the Council of Europe’s consultation round on “Predictivity, genetic testing and
insurance” in the context of the development of a supranational legal instrument (Council of Europe,
2012), the use of genetic information in private insurance remains a timely and hotly debated topic,
certainly one to watch on the EU policy agenda.
References
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Condit, C.M. (2010) ‘Public attitudes and beliefs about genetics’, Annual Review of Genomics and Human Genetics, 11:
339–359.
Council of Europe, Steering Committee on Bioethics (2012) Consultation Document on Predictivity, Genetic Testing and
Insurance, Council of Europe, Strasbourg, France, DH-BIO/INF 1, 2012. Available at
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