US Bioethics Commission examines genomic data ethics

7 February 2012

The US Presidential Commission for the Study of Bioethical Issues is examining ethical issues raised by whole genome sequencing, mores specifically on the proper use of genomic research data from clinical trials, with a particular focus on privacy issues.
The move from purely scientific research to more clinical analysis is raising concerns about new issues that may arise, including public privacy and confidentiality. The commission has been hearing expert views on the opportunities and issues for researchers and the public, neatly summarised by Professor George Annas of Boston University School of Public Health who said: "How can we support science and research and also protect individual privacy? I think it can be done".
Professor Daniel Masys from the University of Washington School of Medicine questioned whether it was “even ethical to allow our healthcare system to practice without a systems infrastructure for decision support”. Other issues included whether consent for the production and use of genomic data was any different from other forms of consent and whether it was acceptable to discard genomic data of unknown clinical significance.
The group is expected to hold further meetings throughout 2012 to consider the issues, before producing a final report.

Comment: This gathering of expert opinion to shape policy decisions with respect to genomic data is a useful exercise, though it would also benefit from a wider review of public concerns such as the current UK public survey being conducted by the Wellcome Trust (see previous news). Previous work has suggested that genome data does not raise fundamentally new ethical issues in clinical practice, but at the same time it is clear that rulings have to be made on matters such as incidental findings, feedback of data to research participants and health care providers, and so on. 

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