Identifying the nature and extent of public and donor concern about the commercialisation of biobanks for genomic research.

Various forms of private investment are considered necessary for the sustainability of biobanks, yet pose significant challenges to public trust. To manage this tension, it is vital to identify the concerns of relevant stakeholders to ensure effective and acceptable policy and practice. This research examines the aspects of commercialisation that are of most concern to the Australian public (n = 800) and patients who had donated their tissue to two large disease specific (cancer) public biobanks (n = 564). Overall, we found a commercialisation effect (higher support for public relative to private) in relation to funding, research location and access to stored biospecimens. The effect was strongest for research locations and access compared to funding. A latent class analysis revealed the pattern of concern differed, with the majority (34.1%) opposing all aspects of commercialisation, a minority supporting all (15.7%), one quarter (26.8%) opposing some (sharing and selling tissue) but not others (research locations and funding), and a group who were unsure about most aspects but opposed selling tissue (23.5%). Patient donors were found to be more accepting of and unsure about most aspects of commercialisation. Members of the (general) public who were motivated to participate in biobanking were more likely to oppose some aspects while supporting others, while those who indicated they would not donate to a biobank were more likely to oppose all aspects of commercialisation. The results suggest that approaches to policy, engagement and awareness raising need to be tailored for different publics and patient groups to increase participation.

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.

The impact of commercialisation on public perceptions of stem cell research: exploring differences across the use of induced pluripotent cells, human and animal embryos.

The development of pluripotent cells that enable stem cell research (SCR) without destroying human embryos is now a leading priority for science. Public and political controversies associated with human embryonic SCR experienced in the recent past should be alleviated if scientists no longer need to harvest cells from human embryos. This research suggests however additional issues needing attention in order to gain the public's trust and support: the use of mouse embryos and the commercialisation of research. Using a representative sample of 2,800 Australians, and an experimental telephone survey design, this research compared levels and predictors of public support for stem cell research across three cell source conditions: human embryo (HE), mouse embryo (ME) and induced pluripotent cells (iPSCs). The results revealed that the public were significantly more likely to support research using iPSCs than HE and ME cells and public compared to private research (regardless of the cell source). There was no significant difference in support for HE compared to ME research, but the former was viewed as more likely to lead to accessible health care benefits and to be associated with more trustworthy scientists. The results of a multimediation structural equation model showed that the primary reason support for SCR significantly dropped in a private compared to public context (i.e., the commercialisation effect) was because public scientists were trusted more than private scientists. This effect was consistent across all three SCR materials, suggesting that the use of mouse embryos or even iPSCs will not reduce the publics' concern with commercialised science. The implications these results have for public acceptance of stem cell and animal research are discussed in relation to possible solutions such as increasing public awareness of the regulation of animal research and benefit sharing.