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)

Under conditions with a low level of available genetic information, mutualistic private insurance markets will often create broadly just outcomes, even if by accident rather than by design. Normatively acceptable outcomes of this kind would come under threat if insurers were to have increased access to genetic information with substantial predictive content.1 As the availability of relevant individual genetic information grows, mutualistic forms of market-based insurance face a dilemma between either sacrificing individuals’ interests in genetic privacy, or creating conditions for (...) market failure due to adverse selection. My view is therefore that we have good reason to shift towards more solidaristic forms of ‘risk-sharing institutions’ with regard to functions such as life insurance and critical illness insurance, as a way of resolving normative tensions between values of equality, privacy, non-discrimination and autonomy. Such a position, I have argued, does not depend on endorsing any particular conception of social justice, but can be defended on the basis of a number of different plausible accounts of what justice demands.1 Jonathan Pugh argues against my endorsement of a shift towards solidaristic, non-market risk-sharing institutions, and instead argues broadly in favour of the status quo. He holds that it counts against my proposals that they ‘have wide-ranging and highly revisionary implications’, and argues that my approach is mistaken in relying on ‘a single contestable theory’. Pugh offers a purportedly less contestable account of the relevant normative considerations underlying insurance regimes, composed of three …. (shrink)

The following abstracts were selected by AJOB-Neuroscience judges as the best submitted to the International Neuroethics Society 2021 Annual Meeting.

In the paper ‘Genetic information, insurance, and a pluralistic approach to justice’, Jonathan Pugh1 develops an argument from unresolved pluralism in our theories of justice, via the pluralism this occasions in relation to the specific question of the use of genetic test results in insurance underwriting, to the conclusion that the UK regulatory approach in relation to the use of GTRs in insurance is broadly correct.1 Pugh’s argument is wide-ranging and I cannot provide a complete critique of it in this (...) short comment, but I will gesture towards some strands of the argument that are potentially problematic. The first potential problem in the argument is that Pugh bases his argument on a very extensive range of accounts of justice, including pure maximising consequentialism, strict egalitarianism and libertarianism, among many others. If these are all accounts of justice, it is not strange that there is pluralism of conclusions in relation to a specific question of justice or discrimination, such as the use of GTRs in the underwriting of specific kinds of insurance contracts. Pugh’s range, for instance, includes accounts of justice that deny the direct importance of distributive concerns as well as accounts that see distributive concerns as crucial. These accounts disagree not only about the answer to Pugh’s question but also about …. (shrink)

While a number of jurisdictions internationally prohibit insuring companies to be able to use genetic information in their risk classification, a voluntary code of practice permits insurers the limited use of predictive genetic test results in the UK. Jonathan Pugh1 offers a pluralist justice-based argument in support of the UK practice. Pugh’s position is developed to avoid what he sees as flaws with the current debate on insurers’ access to genetic information, including an alleged reliance on idealised assumptions about the (...) predictive power of genetic test results, revisionary implications for the provision of insurance suggested in the debate and failings of commentators to engage adequately with a conception of justice that undergirds the status quo approach in the UK. Pugh suggests that a quasi-libertarian approach to justice is implicit within the terms of the present Code and should be phrased as a principle of equity. Further, he argues that basic egalitarian and non-comparative concerns should be captured in broad principles: equal access and need. This leaves him with three principles that should be balanced in order to guide protection insurance policy. When the argument is applied to review …. (shrink)