Viewpoint: Study participants should have the right to their own results

records

Study participants nearly always want their own results. But few get them.

The ethical concern with giving an individual his or her results has been driven largely by a traditional doctor-centered model of health: results that can’t be tied directly to a medical recommendation or diagnosis are seen as not useful and might cause too much stress.

Last month [August], an expert committee of the National Academies of Sciences, Engineering, and Medicine (NASEM) reviewed the pros and cons of sharing individual results with study participants and concluded that the old restrictions don’t make sense anymore. Research has become more collaborative, with study participants treated as partners rather than as “subjects,” and their ability to benefit from their own research results often extends beyond medical care.

Related article:  ‘This is what it feels like to be normal’: Experimental stem cell treatment shows promise against Parkinson's

To support this shift in thinking, the NASEM committee recommended giving study participants the right to decide for themselves whether to receive their results.

Critics of reporting back individual research results argue that it will cause extreme worry among participants, or that people might misunderstand their results and take actions that are unnecessary, or even counterproductive. Our research has shown just the opposite: sharing individual results with study participants improves science literacy and health literacy, and is an effective tool for translating research into better public health.

Read full, original post: All study participants have a right to know their own results. My lab has been doing that for years

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