A systematic literature review of the 'commercialisation effect' on public attitudes towards biobank and genomic data repositories.

Initiatives that collect and share genomic data to advance health research are widespread and accelerating. Commercial interests in these efforts, while vital, may erode public trust and willingness to provide personal genomic data, upon which these initiatives depend. Understanding public attitudes towards providing genomic data for health research in the context of commercial involvement is critical. A PRISMA-guided search of six online academic databases identified 113 quantitative and qualitative studies using primary data pertaining to public attitudes towards commercial actors in the management, collection, access, and use of biobank and genomic data. The presence of commercial interests yields interrelated public concerns around consent, privacy and data security, trust in science and scientists, benefit sharing, and the ownership and control of health data. Carefully considered regulatory and data governance and access policies are therefore required to maintain public trust and support for genomic health initiatives.

Context matters in genomic data sharing: a qualitative investigation into responses from the Australian public.

BACKGROUND: Understanding public attitudes to genomic data sharing is widely seen as key in shaping effective governance. However, empirical research in this area often fails to capture the contextual nuances of diverse sharing practices and regulatory concerns encountered in real-world genomic data sharing. This study aimed to investigate factors affecting public attitudes to data sharing through responses to diverse genomic data sharing scenarios. METHODS: A set of seven empirically validated genomic data sharing scenarios reflecting a range of current practices in Australia was used in an open-ended survey of a diverse sample of the Australian public (n = 243). Qualitative responses were obtained for each of the scenarios. Respondents were each allocated one scenario and asked five questions on: whether (and why/not) they would share data; what sharing would depend on; benefits and risks of sharing; risks they were willing to accept if sharing was certain to result in benefits; and what could increase their comfort about sharing and any potential risk. A thematic analysis was used to examine responses, coded and validated by two blinded coders. RESULTS: Participants indicated an overall high willingness to share genomic information, although this willingness varied considerably between different scenarios. A strong perception of benefits was reported as the foremost explanation for willingness to share across all scenarios. The high degree of convergence in the perception of benefits and the types of benefits identified by participants across all the scenarios suggests that the differentiation in intention to share may lie in perceptions of risk, which showed distinct patterns within and between the different scenarios. Some concerns were shared strongly across all scenarios, particularly benefit sharing, future use, and privacy. CONCLUSIONS: Qualitative responses provide insight into popular assumptions regarding existing protections, conceptions of privacy, and which trade-offs are generally acceptable. Our results indicate that public attitudes and concerns are heterogeneous and influenced by the context in which sharing takes place. The convergence of key themes such as benefits and future uses point to core concerns that must be centred in regulatory responses to genomic data sharing.

Public reactions to direct-to-consumer genetic health tests: A comparison across the US, UK, Japan and Australia.

While direct to consumer health-related genetic testing (DTCGT) has potential to provide accessible genetic information and empower individuals to make informed healthcare decisions, it attracts concern associated with regulatory gaps, clinical utility and potential for harm. Understanding public reactions to DTCGT is vital to facilitate considered regulatory, health care and consumer protection strategies. Yet little is known, particularly outside the dominant US market, about how the general public view and might engage with DTCGT outside traditional health care systems. This paper addresses this knowledge gap with the first empirical study to investigate general public views across four countries, each at different stages of market development. US (n = 1000), UK (n = 1014), Japanese (n = 1018) and Australian (n = 1000) respondents completed an online experimental survey assessing comprehension, risk perceptions, and potential psychological and behavioural outcomes by type of test (disease pre-disposition and drug sensitivity), severity, lifestyle factors, and family history. Results showed generally low awareness and intention to purchase across countries, highest in the US and lowest in Japan. Results also showed clear preference for within-country purchases (less in Japan), with reports returned via doctors far more important in Japan. All respondents were more likely to act on test results, where there was higher genetic or lifestyle risk of developing a disease. Statistical comparisons of demographic and health-related variables across countries point to the need for further analyses designed to explain much needed cross-cultural, cross-health care system and developed versus developing market differences.

Predicting Public Attitudes Toward Gene Editing of Germlines: The Impact of Moral and Hereditary Concern in Human and Animal Applications.

Background and Objective: New and more efficient methods of gene editing have intensified the ethical and legal issues associated with editing germlines. Yet no research has separated the impact of hereditary concern on public attitudes from moral concern. This research compares the impact these two concerns have on public attitudes across five applications including, the prevention of human disease, human and animal research, animals for the use of human food and the enhancement of human appearance. Methods: A sample of 1004 Australians responded to either a telephone (n = 501; randomly selected) or online survey (n = 503; sourced by Qualtrics). Both samples were representative in terms of States and Territories as well as gender (51% female), though the online sample was younger (M = 40.64, SD = 16.98; Range = 18-87) than the telephone sample (M = 54.79, SD = 18.13; Range = 18-96). A 5 (application) by 3 (type of cell) within groups design was utilized, where all respondents reported their level of approval with scientists editing genes across the 15 different contexts. Multilevel modeling was used to examine the impact of moral (embryo vs. germ) and hereditary (germ vs. somatic) concern on attitudes across all applications. Results: Australians were comfortable with editing human and animal embryos, but only for research purposes and to enhance human health. The effect of moral concern was stronger than hereditary concern, existing in all applications except for the use of animals for human purposes. Hereditary concern was only found to influence attitudes in two applications: improving human health and human research. Moral concern was found to be accentuated amongst, women, more religious individuals and those identifying as Australian, while hereditary concern was strongest amongst non-Australians, those with stronger trust in scientists, and more religious respondents. Conclusion: Moral and hereditary concerns are distinct, and require different approaches to public education, engagement and possibly regulation. Further research needs to explore hereditary concern in relation to non-human applications, and the reasons underlying cultural and gender differences.

Attitudes to genetically modified food over time: How trust in organizations and the media cycle predict support.

This research examined public opinion toward genetically modified plants and animals for food, and how trust in organizations and media coverage explained attitudes toward these organisms. Nationally representative samples (N=8821) over 10 years showed Australians were less positive toward genetically modified animals compared to genetically modified plants for food, especially in years where media coverage was high. Structural equation modeling found that positive attitudes toward different genetically modified organisms for food were significantly associated with higher trust in scientists and regulators (e.g. governments), and with lower trust in watchdogs (e.g. environmental movement). Public trust in scientists and watchdogs was a stronger predictor of attitudes toward the use of genetically modified plants for food than animals, but only when media coverage was low. Results are discussed regarding the moral acceptability of genetically modified organisms for food, the media's role in shaping public opinion, and the role public trust in organizations has on attitudes toward genetically modified organisms.