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Are genomic results obtained
in a research context relevant for life insurance underwriting?
Genomic results obtained in
the research context may not meet scientific and medical requirements (eg
analytical validity, clinical validity, and clinical utility/actionability) for
use in the clinic.27 For this reason, these results and associated information are
generally not communicated to research participants. An exception to this
general rule is in the field of translational genomic research, which uses the
results of preclinical studies to validate new research tools and methods for
diagnostic, prevention, and treatment,28 and the occasional cases of actionable research results or material
incidental findings from GWAS and whole-genome/exome studies.29
Given the particular nature of genomic research results, which are
generally meant to create generalizable knowledge and the difficulties of
interpretation, their use by insurers has raised significant concerns. For
example, there is no clear consensus on the scientific criteria and actuarial
evidence required for research results to be used for underwriting. Moreover,
participants might not even be aware that, in some cases, they may need to
declare research results to insurers. Informed of this possibility, individuals
could decide (as demonstrated in several studies13, 14, 30, 31) whether or not to participate in genomic research projects to avoid any
negative impact on their insurability. If this phenomenon were to materialize
on a large scale, it would also have the effect of stifling scientific research
and innovation. Consequently, in many jurisdictions, insurers have been legally
precluded or have voluntarily refrained from accessing genetic results
including genomic research results.7 Given this trend, a broad international consensus among life insurers
not to request genomic research results would be a meaningful affirmation. It
would effectively promote public trust in the practices of the life insurance
industry, foster research participation, and ultimately contribute to the
generation and circulation of more medical and actuarial data (statistical
information used to calculate insurance risk and premium amount).
Action item 2.1
Where countries have not
already adopted laws or moratoria restricting the use of genetic information
for life insurance underwriting, life insurers and their member companies
should adopt an explicit policy not to ask insurance applicants for genomic
research results.
Action item 2.2
Concomitantly, associations of
life insurers and reinsurers should consider drafting an international
consensus statement recommending to their members not to ask insurance
applicants for genomic research results.
Should predictive risk
assessment and risk stratification models based on genomic data be used for
life insurance underwriting?
Medical risk prediction models
estimate the likelihood of future health-related events. These models use
information from multiple sources including lifestyle questionnaires as well as
the results of a physical examination and blood tests to predict the risk of
conditions such as cancer, heart disease, and diabetes.32, 33Risk stratification models go further, using these estimates to allocate
individuals to deciles or quintiles of the risk distribution or into
categorical groups of low-, intermediate-, or high-risks groups. In this way,
individuals can then be placed in a segment or risk class alongside others at
similar risk. The smaller the stratum, the more alike members of the group will
be. Using these models, different interventions can be targeted to different
risk strata to potentially improve outcomes.
In life insurance underwriting, individuals having similar risk profiles,
for example, for mortality, are grouped together into homogeneous risk classes
for the purposes of determining insurance premiums and estimating death benefit
costs.34Similar to risk stratification in the medical context, but focusing on
mortality, the process of risk classification consists of placing insurance
applicants into groups representing roughly equivalent levels of risk. The
American Academy of Actuaries maintains that risk classification ‘should
accurately reflect the cost of a given risk characteristic; be applied
objectively and consistently; and be cost-effective and responsive to change
(and scientific developments)’.35 If permitted, actuarial risk stratification models integrating
genetic data from population biobank projects with other medical data (eg from
clinical trials and cohort studies) would have the potential to refine and
determine sub-populations for more accurate risk assessment.36 Genomic risk stratification, like other contextual medical,
environmental, and lifestyle information, could thereby avoid genetic
exceptionalism. Ultimately, it could be argued that the absence of genomic risk
stratification in insurance underwriting might eventually constitute
discrimination due to actuarial/clinical inaccuracy.
Nonetheless, to authorize this approach would require substantial change to
be made to the laws and practices of a number of countries, which have already
adopted laws or voluntary agreements hoping to neutralize public anxiety about
genetic discrimination without excessively disadvantaging insurers. Any change
would generate additional costs, and might well foster greater public distrust
of insurers even though such classification could eventually become more
accurate from an actuarial standpoint.
Currently, insurers routinely place about 90% of applicants in the
standard risk pool.8 Few applicants would move into or out of standard risk pools because
genomic information about currently known common variants seldom substantially
affects mortality risk estimation already based on phenotype and family
history.37Furthermore, the accuracy of risk prediction models depends on the target
population. Whatever the objective impact of the use of risk prediction models
including genetic information for life insurance, enquiries by insurers may
well be seen by the public as unwelcome and intrusive. Unless the benefits of
insurers’ access to genomic information are large and understood, the damage to
the public profile of insurers from insisting on access to such information for
underwriting may outweigh its current commercial value.
Action item 3.1
Given the current scientific
uncertainties and public apprehension, there is at present insufficient benefit
to warrant the addition of predictive genomic data to actuarial risk
stratification models. However, research by insurance companies on ways to
include genomic data to their models and the implication for customer’s
insurability should be encouraged.
Action item 3.2
To foster public trust in
genomics and promote the eventual use of risk prediction and stratification
models, insurers should at minimum offer life insurance policy covering a
minimal (ceiling) amount at an affordable rate and with no health questions
(including about genomics) asked.
What other actions could
insurance companies and other stakeholders in the debate take to alleviate
concerns over the use of genomic information in life insurance contracts?
Use of genetic information by
insurers seems to be one of the recurring factors that motivate people not to
participate in genetic research or not to undertake clinically relevant genetic
testing.13, 14 For example, in a recent survey prepared for the Office of the
Privacy Commissioner of Canada, 52% of surveyed Canadians expressed strong
concern that, if their doctor recommended that they undergo genetic testing,
they might be asked to provide the results for non-health-related purposes.
Seventy-one percent of those who expressed significant concern said their
concerns would likely affect their willingness to undergo genetic testing.38This is highly problematic as important decisions regarding one’s health
care or financial planning should not be taken based on inaccuracies, hype, or
anecdotes. Therefore, insurability concerns should be addressed to avoid
potentially detrimental effects on research as well as to ensure the
integration of genomics into clinical care. Previous attempts by insurers to
provide information about the nature and functioning of the life insurance
contract have had limited success in reassuring the population.39, 40, 41 More creative solutions are needed. It could be that the information
provided so far has failed to reach most participants in the genomic and
insurance debate such as the popular media, ethics committees, clinicians,
researchers, and genetic counsellors. The content of the message sent to these
stakeholders might also need to be revised and validated by parties
representing different complementary expertises in the debate. There is a need
for tailored, accessible, and objective information for communication to these
stakeholders.
Additional strategies proposed to allay popular anxiety include documenting
the industry’s experience with genetic information and making this
documentation available for independent audits as is currently done in the
United Kingdom,7 or appointing an independent authority (ie ombudsman) that will be
responsible of informing and protecting the population in case of adverse
decisions based on genetic data.
Action item 4.1
Groups with complementary
expertise (eg insurers, actuaries, genetic counsellors, clinicians, and
genomics researchers) should develop clear, up-to-date, reliable information
material and frequently asked questions about genomics and underwriting to be
communicated by all stakeholders involved (eg public, popular media, ethics
committees, clinicians, researchers, and genetic counsellors).
Action item 4.2
Beyond the provision of
information, regional/national life insurance professional organizations could
develop openly accessible reference documents regarding the practices of their
members on the use of genetic test information. They could also perform regular
audits of these practices and have an independent third party also do so.
Action item 4.3
National governments could
name an independent third party (ombudsman), with expertise in both genomics
and personal insurance underwriting to be responsible for addressing complaints
of adverse underwriting decisions involving genomic information.
Conclusion
Genomic research has led to the rapid development of new tools that provide
an increasing amount of complex ‘at-risk’ health information. These recent
developments in genomics and concomitant progress in information technologies
are presenting a different set of challenges and opportunities for all
stakeholders including the life insurance industry. Having reviewed the current
ethical, social, and legal issues on the use of genomic information in the
context of life insurance, the Expert Group identified four questions and
provided action items as a response.
We believe the proposed actions to be sufficiently broad and inclusive to
be relevant to life insurance and genomics in a variety of national and
regional contexts. They map out interesting options to meet the challenges set
forth by the use of genomic information in the context of life insurance.
Nevertheless, the evolving pace of the use of genomic data should continue to
be carefully monitored by all stakeholders.
The authors are members of the International Expert Group on Genomics, Life
Insurance, and Breast Cancer co-chaired by Hilary Burton and Yann Joly.
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Acknowledgements
We thank Marie-Cécile Symons and Nadine Thorsen for their valuable assistance
in organizing the ‘Life Insurance: Breast Cancer Research and Genetic Risk
Prediction Seminar’ held on 24 and 25 September 2012 in Quebec City. This
research was financially supported by the Canadian Institutes of Health
Research (CIHR) for the ‘CIHR Team in Familial Risk of Breast Cancer’ Program
(Grant No. 87521) and by the Ministry of Economic Development, Innovation, and
Export Trade (Grant No. PSR-S11R
