Abstract
Trust may be important in shaping public attitudes to genetics and intentions to participate in genomics research and big data initiatives. As such, we examined trust in data sharing among the general public. A cross-sectional online survey collected responses from representative publics in the USA, Canada, UK and Australia (n = 8967). Participants were most likely to trust their medical doctor and less likely to trust other entities named. Company researchers were least likely to be trusted. Low, Variable and High Trust classes were defined using latent class analysis. Members of the High Trust class were more likely to be under 50 years, male, with children, hold religious beliefs, have personal experience of genetics and be from the USA. They were most likely to be willing to donate their genomic and health data for clinical and research uses. The Low Trust class were less reassured than other respondents by laws preventing exploitation of donated information. Variation in trust, its relation to areas of concern about the use of genomic data and potential of legislation are considered. These findings have relevance for efforts to expand genomic medicine and data sharing beyond those with personal experience of genetics or research participants.
Highlights
The future of genomic medicine and research relies upon the sharing of health and genomic data to facilitate large-scale analyses and support clinical interpretation of genetic variants (ACMG Board of Directors 2017; Raza and Hall 2017)
Trust relates to the ability of researchers, institutions and governance arrangements to realise benefits and manage or mitigate risks associated with data sharing, including to privacy and confidentiality (Shabani et al 2014; Nuffield Council on Bioethics 2015)
Future research might investigate the relationship between data controversies and trust over time, and how it is affected by shifts in regulatory landscapes, including the EU General Data Protection Regulation. This analysis adds to our understanding of how and to whom public trust is given in genomic data sharing
Summary
The future of genomic medicine and research relies upon the sharing of health and genomic data to facilitate large-scale analyses and support clinical interpretation of genetic variants (ACMG Board of Directors 2017; Raza and Hall 2017). Trust relates to the ability of researchers, institutions and governance arrangements to realise benefits and manage or mitigate risks associated with data sharing, including to privacy and confidentiality (Shabani et al 2014; Nuffield Council on Bioethics 2015). It can be conceptualised as a heuristic that is activated when people are faced with risks and need to make decisions or a ‘leap of faith’ with little or no available information (Luhmann 2000; Mollering 2001; Lipworth et al 2009)
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