Genetic research has traditionally ensured that samples are anonymised, and individual research findings are not shared with participants. However, it is not certain whether this approach genuinely reflects the desire of participants or indeed researchers. The new survey uses film to pose different scenarios and ask respondents their views and preferences on the ethical issues raised; it is open to anyone, including scientists and health professionals, though respondents need no prior knowledge about genetics.
The survey is part of the five-year Genome Ethics study, which is intended to guide policy decisions about the feedback of findings from whole genome sequencing studies as they become increasingly common. Researcher Dr Anna Middleton explained: “We need to understand what people want from whole genome testing…policy is being written world wide on what researchers should share from genome studies and yet much of this is based on anecdote and intuition”.
Comment: This is a really valuable opportunity to share personal viewpoints on the sharing of genomic data and shape future practice. As whole genome sequencing moves into clinical practice, and members of the public have increasing opportunities to contribute to genomic and medical research, it is important to understand what people genuinely do and do not want to know, in terms of personal genomic information of possible medical relevance.