In this issue of Journal of Medical Ethics, Pugh1 offers a pluralist justice-based argument in support of the spirit, if not the precise letter, of the UK approach to the use of genetic test results to underwrite life insurance. We agree with Dr Pugh’s general contention that there is ethical and philosophical support for curtailment of insurers’ access to, and use of, applicants’ GTR in underwriting. However, we disagree with the contention that broad revisionary implications of certain theories of justice (...) render them unpersuasive. In fact, despite the competing theories, the United Nations Universal Declaration on the Human Genome and Human Rights has already made a clear statement on this issue. Article 6 of the Declaration,2 unanimously adopted in 1997 by 77 countries, along with a resolution for its implementation,3 states, ‘No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity.’ Further, Article 25 of the UN Convention on the Rights of Persons with Disabilities prohibits discrimination against persons with disabilities in the provision of life insurance. These statements are not contingent on the acceptability of the degree of revisionary implications. They are clear, unambiguous statements about the obligations of signatory countries. Despite this, few countries have taken steps commensurate with this expectation, possibly due to the scale of changes required for proper ratification. However, genetic discrimination is recognised as one …. (shrink)

The use of genetic testing has prompted the question of whether insurance companies should be able to use predictive genetic test results (GTRs) in their risk classification of clients. While some jurisdictions have passed legislation to prohibit this practice, the UK has instead adopted a voluntary code of practice that merely restricts the ways in which insurance companies may use GTRs. Critics have invoked various theories of justice to argue that this approach is unfair. However, as well as sometimes relying (...) on somewhat idealised assumptions, these analyses have tended to invoke theories that have wide-ranging and highly revisionary implications for insurance. Moreover, they fail to adequately engage with a conception of justice that plausibly undergirds the status quo approach to insurance in the UK. I argue that it is a mistake to simply invoke a single contestable theory in seeking to develop sound policy on the use of GTRs in insurance. To that end, in this paper, I outline three plausible principles of justice that policy on this issue ought to balance: A principle of equity, a principle of equal access and a principle of need. In doing so, I shall offer a pluralist justice-based argument in support of the spirit, if not the precise letter, of the UK approach. (shrink)

Surveillance capitalism companies, such as Google and Facebook, have substantially increased the amount of information collected, analyzed, and monetized, including health information increasingly used in precision medicine research, thereby presenting great challenges for health privacy.

The recent proliferation of new data and technologies enables increasingly finer personalization of products and prices in every domain. In insurance, this revives and enlarges old debates around fairness that have never been completely settled. We will argue that the commonly accepted “actuarial fairness” as based on the “individual cost of risk” derives in fact from a conflation: while it indicates the average cost for a group of insureds from the perspective of an insurance company—and is therefore sound from a (...) business profitability viewpoint—it is arguable whether it represents the “fair price” for the individual insured. We first show in a historical perspective the intertwinement of conceptions of fairness with knowledge, in order to point to the alternative to actuarial fairness for insurance. We then describe the intrinsic difference between the insured and the insurer when underwriting an insurance contract. Finally, we build on this distinction to discuss the meaning of fairness in insurance prices. We thus hope to re-center the debate around insurance fairness on its underlying solidarity mechanisms rather than technical and actuarial considerations. (shrink)