FLICKR, CREATIVE COMMONS, WAPONI
A single sample can yield a lot of information, but many are advocating for a change in the framework of informed consent for biomedical research to protect patients from surprises about where that information shows up.
Consent forms for research face a variety of issues, according to a story in Nature this week, including confusing or ambiguous wording, promises of anonymity that cannot always be upheld, and varying policies of opting in or out. Lawyers and ethicists say these inconsistencies put patients at risk of having their information used in ways they didn’t anticipate, such as gene patents arising from studies of Parkinson’s disease, or the 2010 case of a tribe of Native Americans in Arizona who thought they were participating in a diabetes study, ...
