genomeboy.com

The Genomics Law Report continues to dazzle. Two recent commentaries merit special attention.

• Daniel MacArthur on  the right of research participants to the entirety of their data:

Returning incidental findings poses major challenges for researchers: it requires disrupting well-established protocols for informed consent and subject anonymisation, and establishing new frameworks for responsible data return and counselling. Yet the alternative approach – withholding medically useful (or even simply intellectually interesting) information from research subjects even if they request it – is ethically problematic. In the absence of convincing evidence that disclosure of results causes harm, I would argue that the default position should be that research participants have complete access to their own genetic data if they request it.

• And Barbara Prainsack on the ways in which access to that data may create not only rights, but, for better or worse, obligations:

It is indeed a welcome development that growing numbers of people can access genetic and other health information (personalised and otherwise) relatively easily, and that specialised medical knowledge is no longer the prerogative of those with a professional education…But the participatory turn in medicine is also indicative of an ongoing individualisation of responsibility in health care: The more knowledge we can obtain, the more we will be expected to obtain, and to pay for.