Genetic Discrimination in Access to Life Insurance: Does Ukrainian Legislation Offer Sufficient Protection against the Adverse Consequences of the Genetic Revolution to Insurance Applicants?

This paper presents an inter-disciplinary study of the risk for, and protections against, genetic discrimination in access to life insurance in Ukraine. It aims (i) to review questions related to genetic information, health status, and family history currently included in Ukrainian life insurance application forms; (ii) to analyze the Ukrainian legislation related to equity and nondiscrimination and to determine whether it provides adequate protection against genetic discrimination (GD). Research findings of our insurance application forms review show that Ukrainian life insurance companies ask broad questions about health and family history that may be perceived by applicants as requiring the disclosure of their genetic information. Our legal analysis shows that today there are no genetic specific law protecting Ukrainians people against GD in insurance. However, Ukrainian human rights legislation provides some protection against multiple grounds of discrimination and given the ratification by Ukraine of the European Convention on Human Rights it is possible that these grounds could be interpreted by tribunals as also including genetic characteristics. As a next step, Ukrainian researchers should develop a survey to obtain much needed data on the incidence and impact of GD in Ukraine. Following this it will be possible for policymakers to better assess whether there is a need for an explicit non-GD law in this country. Such a law would have the benefit of explicitly aligning Ukraine’s legal framework with that of many of its European partners.

Surpassing our genes: The subversive post-human message of 'Gattaca'

The movie Gattaca is often referenced in public debates about the societal dangers of human gene editing. In the public imaginary, its message is clear: the dystopian future it portrays stands as a warning against the societal acceptance of genetic perfectionism and genetic discrimination. This article argues that such a reading misses a deeper message of this cinematic text. Rather than offer a bioethics lesson against the use of genetics to make better human babies, in our opinion, the film actually argues that such genetic tampering is unlikely to succeed, but that the genetic engineering of a superior post-human individual is both possible and desirable.

Religious Perspectives on Precision Medicine in Singapore

Precision medicine (PM) aims to revolutionise healthcare, but little is known about the role religion and spirituality might play in the ethical discourse about PM. This Perspective reports the outcomes of a knowledge exchange fora with religious authorities in Singapore about data sharing for PM. While the exchange did not identify any foundational religious objections to PM, ethical concerns were raised about the possibility for private industry to profiteer from social resources and the potential for genetic discrimination by private health insurers. According to religious authorities in Singapore, sharing PM data with private industry will require a clear public benefit and robust data governance that incorporates principles of transparency, accountability and oversight.

Governing Genomics

There is no most-compelling approach for governing genomics technologies, There are several possibilities: Governance may be top-down from experts to the public; it may be sideways, through advocacy groups for particular issues; or it may be bottom-up, resulting from an incident or political framing that engages the public. It may, alternatively, not occur much at all, or be dispersed across many separate arena. Many experts see particular genomics arenas as distinct and requiring separate governance structures, while the public mostly sees its possibilities and risks as a unified whole. A further complication is that residents of each quadrant typically prefer different governance structures, although Enthusiasts and the Hopeful, and (separately) Skeptics and Rejecters, agree more than other pairings. Author Jennifer Hochschild explains why she fits more into the Enthusiasm cell than the others. She reasons that excessive caution about what might go wrong makes innovations in societal and individual benefits difficult to achieve, that genomic scientists are ethically sophisticated and capable of learning to mitigate problems, and that concern about risks tends to be abstract and focused on possibilities, whereas benefits tend to be concrete and demonstrable. Nonetheless, however governance moves forward, it will need to monitor possibilities for racial, class, or genetic discrimination.

Genetic discrimination: introducing the Asian perspective to the debate

Our article aims to provide a comprehensive portrayal of how seven Asian jurisdictions have sought to address the challenge of genetic discrimination (GD) by presenting an analysis of the relevant legislation, policies, and practices. Based on our findings, policy discussion and action on preventing or mitigating GD have been narrowly framed in terms of employment, insurance, disability, marriage, and family planning. Except for South Korea, none of the jurisdictions we examined has adopted specific legislation to prevent GD. However, for Asia to truly benefit from its recent scientific and technological progress in genomics, we highlight the need for these jurisdictions to engage more proactively with the challenges of GD through a coordinated regulatory and governance mechanism.

The impact of cross-kingdom molecular forensics on genetic privacy

Recent advances in metagenomic technology and computational prediction may inadvertently weaken an individual’s reasonable expectation of privacy. Through cross-kingdom genetic and metagenomic forensics, we can already predict at least a dozen human phenotypes with varying degrees of accuracy. There is also growing potential to detect a “molecular echo” of an individual’s microbiome from cells deposited on public surfaces. At present, host genetic data from somatic or germ cells provide more reliable information than microbiome samples. However, the emerging ability to infer personal details from different microscopic biological materials left behind on surfaces requires in-depth ethical and legal scrutiny. There is potential to identify and track individuals, along with new, surreptitious means of genetic discrimination. This commentary underscores the need to update legal and policy frameworks for genetic privacy with additional considerations for the information that could be acquired from microbiome-derived data. The article also aims to stimulate ubiquitous discourse to ensure the protection of genetic rights and liberties in the post-genomic era.