Heritable human genome editing has garnered significant attention in scholarly and lay media, yet questions remain about whether, when, and how heritable genome editing ought to proceed. Drawing on interviews with scientists who use genome editing in their research and professionals engaged in human genome editing governance efforts, we examine their views on the permissibility of heritable genome editing and the governance strategies they see as necessary and realistic. For both issues, we found divergent views from respondents. We place the (...) views of these scientists and governance professionals within the context of the larger bioethical discussion of heritable genome editing governance, along a continuum of hard to soft approaches. These respondents’ views highlight the challenges of various hard forms of governance and the potential virtues of soft governance approaches. (shrink)

Genomic testing in prenatal care is rapidly advancing and it is now possible to obtain an entire fetal genome via a blood test administered in early pregnancy. In the pursuit of reproductive autonomy, more tests are being offered to more people, for an ever-increasing range of indications. Health professionals who provide pregnancy care are at the vanguard of prenatal testing, yet their views on the impact of technology advancements remain under-explored. Qualitative interviews with Australian healthcare professionals revealed that they value (...) prenatal testing for its information-giving potential. However, the rationale underpinning testing reveals a tension between professionals’ desire for certainty and patients’ expectation that they will be reassured. Coupled with the greater salience of genomic information over other forms of knowledge in prenatal care, we suggest that the unchecked pursuit of information by way of genomic technologies in prenatal testing may paradoxically constrain reproductive autonomy in practice. (shrink)

How do white nationalists use genetic ancestry tests? This article provides a qualitative analysis of posts from Stormfront, a white nationalist message board, to understand how white nationalists use genetic ancestry tests to advance ideological claims about the threat of genetic admixture. Starting in 2004, members of this message board began discussing the promises and pitfalls of using genetic ancestry tests to prove their whiteness. Using Goffman’s framework of stigma and impression management, we explore how they manage undesirable test results (...) and genetic stigma amongst themselves – when they take genetic tests and discover they are partially non-white. Finally, this article looks at how they simultaneously deploy exclusionary or inclusionary strategies that challenge past concepts of whiteness built on the one-drop rule. Pragmatic concerns often drive their strategic positioning when confronted with undesirable test results, as they are aware that too strict exclusionary policies may impede the group’s demographical survival. (shrink)

This article analyses valuation practices, focusing on the way health data constitute different kinds of assets for different actors within an industry-academia partnership in the field of microbiome research. It examines emerging bioeconomic dynamics within data-driven computational biology, contributing to debates about the sociopolitical implications of multiple and synergic valuation practices in personalized medicine for future public health. Through the ethnographic exploration of a personalized nutrition startup active in Europe and the US and a metagenomics research lab based in Italy, (...) we explore the dynamics around the intersection of knowledge production with scientific, economic, and health value. In contrast to traditional commodity and rent-based structures, we expose a hybrid model of bioeconomic enterprise that challenges rigid distinctions between commodification and asset-based rentiership, highlighting synergic business models where multiple registers of the value of worth are played out, translated, and combined. The study unveils a nuanced relationship between data, research, and economic drivers, where scientists perceive they can pursue research independently from market pressures. Beyond these perceptions and narratives, we highlight the economic dynamics that suture basic research and industry in their promotion of health governance that causes social justice concerns by restricting access to high income and hegemonic types of clients/patients. We clarify that epistemic aspects cannot be disentangled from sociopolitical aspects, especially in the digital age, and that where governments implement and enhance digital health solutions, they also need to plan for consistent social (re)adjustments. (shrink)

This study investigates prospective fathers’ reaction to epigenetics and its implications for heredity. Mounting scientific evidence that epigenetic changes transmit through fathers, not just mothers, makes it important to learn how men regard their inheritance conceptually and its relevance for their behavior. This study features in-depth interviews with 31 prospective fathers in Canada. About one-third of respondents had heard of epigenetics, but only one had substantial knowledge. After a non-technical explanation, virtually all found epigenetics plausible, though to varying degrees and (...) with varying mental models of how epigenetic inheritance would work. Nearly all expressed a strong desire to follow whatever behaviors would improve the health of their future children, even lifestyle changes, thus re-aligning responsible fatherhood with new scientific findings. This demonstrates the new concept of genetic subjectivity: socially conditioned attitudes and normative agency based on genetic science. Implications for the ontology of gendered inheritance and social relations are discussed. (shrink)

In Germany, the debate on preimplantation and prenatal testing is heavily influenced by the idea of an antagonism between prospective parents and their potential children. Underlying this antagonism is the assumption that prospective parents follow an ableist logic and do not regard the lives of children with a chronic illness as “worth living”. Taking the example of two rare genetic illnesses, Marfan Syndrome and Cystic Fibrosis, we investigate how persons who themselves are affected by these conditions view preimplantation or prenatal (...) testing for their condition in the context of reproductive decision-making. Our empirical research shows that chronically ill patients’ appreciation of their own life as a “life worth living” does not always translate into an unequivocal wish and readiness to give birth to a child that is affected by their condition as well and argue that taking their views into consideration adds an additional level of complexity to the debate. (shrink)

Research in epigenetics is demonstrating the importance of maternal care towards offspring early in life for long-term health and behavioral outcomes. Although most of this research has been conducted in rodents, these findings are increasingly framing broader debates about mothers’ moral responsibilities for the health of their offspring. In this paper, I investigate the implications of scientific narratives and research agendas of maternal care for current discourses surrounding maternal epigenetic responsibility. I show how despite clear differences between rodent and human (...) contexts of care, researchers tend to construct rodent maternal care as a form of love or emotional commitment. This construction, which ignores fathers’ care for their offspring, reflects widespread social assumptions about mothers’ particular or “natural” capacities to love their children. This has important implications for how we assign moral blame. Because love is important to our widespread understandings of parental virtues, mothers who act “unlovingly” are prone to being judged in an especially harsh manner. By embedding simplistic and gendered assumptions about mothers’ love for their children, then, epigenetics research perpetuates the tendency to consider mothers especially blameworthy where they are perceived as failing to sufficiently care for or love their children. (shrink)

In May 2023, The Guardian announced that babies had been born through mitochondrial replacement therapy (MRT). MRT and its ethical and legal implications have been discussed in the media for over a decade. These discussions have been examined by social scientists and communication scholars. In this article, we seek to determine whether and, if so, how social representations have changed since this announcement. Using thematic analysis and social representations theory, we studied a corpus of 70 English language newspaper articles. Results (...) show three thematic dichotomies: (1) moderation vs. sensationalism; (2) ontologising vs. de-ontologising MRT; and (3) using metaphors for persuasion vs. explanation. The societal concern representation largely dominated reporting around 2015 and the hope and opportunity representation was prominent in current reporting. We argue that the hope representation may facilitate greater patient and public acceptance of MRT but that it may also limit awareness, understanding and discussion of its possible risks and limitations. (shrink)

Genetic advances have brought new opportunities to society, with new powers of polygenic prediction, genetic engineering and gene-based environmental interventions. Judges and lawyers influence interpretations and attitudes towards complex societal issues and develop regulation. Therefore, their genetic literacy and views are an important part of society’s readiness for the genomic era. The study explored judges’ and lawyers’ (N = 117) genetic literacy, as well as views on the use of genetic advances. Quantitative and qualitative analyses showed insufficient knowledge of essential (...) genetic concepts, including striking cases of over- and under-estimation of genetic and environmental influences on behavior. Participants’ views on every issue were widely varied, from strong agreement to strong disagreement. The majority of the participants thought that current laws are not sufficient to protect individuals from misuses of genetic data. The results suggest that society is not ready for the genomic era and call for multidisciplinary efforts to increase the readiness. (shrink)

This study examines how the institutional context informs the ways in which healthy recipients relate to genomic information. Through focus group data, it considers the trend of blood collection agencies (BCA) moving to extend donor genotyping. We investigated how receipt of genomic information is viewed as fitting into the contract of altruistic, voluntary blood donation by donors and non-donors. Our findings suggest that receipt of genomic health information is viewed as fitting the principles of this exchange with some limits. Participants (...) considered the practical value of receiving different kinds of genetic information for individual and collective health from the perspectives of a healthy, altruistic donor, an “entrepreneurial self” and a potential patient. Findings identify the importance of considering the ethics of providing information on genomic markers to blood donors without current clinical value, as well as the impact of providing this information on the donor – BCA relationship. (shrink)