Genetic discrimination and life insurance: a systematic review of the evidence

Abstract

BackgroundSince the late 1980s, genetic discrimination has remained one of the major concerns associated with genetic research and clinical genetics. Europe has adopted a plethora of laws and policies, both at the regional and national levels, to prevent insurers from having access to genetic information for underwriting. Legislators from the United States and the United Kingdom have also felt compelled to adopt protective measures specifically addressing genetics and insurance. But does the available evidence really confirm the popular apprehension about genetic discrimination and the subsequent genetic exceptionalism?MethodsThis paper presents the results of a systematic, critical review of over 20 years of genetic discrimination studies in the context of life insurance.ResultsThe available data clearly document the existence of individual cases of genetic discrimination. The significance of this initial finding is, however, greatly diminished by four observations. First, the methodology used in most of the studies is not sufficiently robust to clearly establish either the prevalence or the impact of discriminatory practices. Second, the current body of evidence was mostly developed around a small number of 'classic' genetic conditions. Third, the heterogeneity and small scope of most of the studies prevents formal statistical analysis of the aggregate results. Fourth, the small number of reported genetic discrimination cases in some studies could indicate that these incidents took place due to occasional errors, rather than the voluntary or planned choice, of the insurers.ConclusionImportant methodological limitations and inconsistencies among the studies considered make it extremely difficult, at the moment, to justify policy action taken on the basis of evidence alone. Nonetheless, other empirical and theoretical factors have emerged (for example, the prevalence and impact of the fear of genetic discrimination among patients and research participants, the (un)importance of genetic information for the commercial viability of the private life insurance industry, and the need to develop more equitable schemes of access to life insurance) that should be considered along with the available evidence of genetic discrimination for a more holistic view of the debate.

Genetic Discrimination: Information Privacy in Public and Private Sectors

“…Joly, Ngueng Feze, and Simar's (2013) systematic review of 33 studies found that 42% concluded that genetic discrimination existed and "gave grounds for serious concern" (p. 11), 48% found the incidences of genetic discrimination were rare, and 9% found no evidence. The researchers noted that there were methodological limitations in reviewed studies preventing a full assessment of the impact of genetic discrimination (Joly, Ngueng Feze & Simar, 2013). This inability to assess impact is also noted by the Canadian Coalition for Genetic Fairness (2015) which states, that even though this form of discrimination is real, exact numbers are hard to determine.…”

Genetic discrimination legislation in Canada: moving from rhetoric to real debate

“…There is also a paucity of evidence regarding the amount of discrimination currently experienced. 1 We believe there is a need for nuanced discussion regarding the roles and remits of the federal government, the provincial and territorial governments, and industry partners. In particular, we see three key areas for discussion and where progress needs to be made.…”

“…1 The context in which this may occur varies, but common situations of discussion include discrimination in securing employment and difficulty obtaining life insurance. The potential for discrimination following genetic testing is a continuing challenge in Canada and elsewhere.…”

Phasing Out Voluntary Donation in Clinical Trials: The Ethics of Mandating Biospecimen Collection

“…This is particularly true in oncology and rare disease [2], where the intersection between research and care is converging with the routinization of next generation sequencing (NGS) [3,4]. While the convergence of research and care fuels new discoveries and has led to major advances in treatment, research suggests the public continues to harbor concern about genetic discrimination [5]; can be distrustful of the pharmaceutical research enterprise [6]; and are not always informed of the regulations for protecting data privacy and security [7]. As a result, it is possible some patients could be denied the opportunity to participate in potentially beneficial clinical research simply because they do not consent to providing biological samples/ data or prefer do so on a restricted basis [8].…”