GenomeWeb is reporting that the National Human Genome Research Institute has handed out nearly $6 million grants to various bioethicists to figure out what the moral thing to do is in the following situation:
The core questions in this area concern whether scientists should provide [research] participants information about their risks for diseases or conditions that were discovered while their genomes were being analyzed for research purposes….
There is a split in the research community about whether or not it is ethical to return results to participants, according to NHGRI, with some believing that there is an obligation to reveal to participants genomic information if it is medically significant and interventions could be taken to prevent a disorder. But others view such sharing as unethical, particularly if participants were told that they would not be contacted, if the information relates to a disorder that has no interventions, or if there are questions about the significance of the information.
Yes, participants should be told about any health risks uncovered by genomics researchers unless they
agreed otherwise. For example, I have signed up for the Personal Genome Project which explicitly tells me in the consent form [PDF] to which I agreed:
Any information, data, analyses or other materials created or prepared by the PGP from such tissue samples or specimens, including, without limitation, your DNA sequence data, cell lines and the results of any research or analysis performed by or in collaboration with the PGP, are the property of and owned by the PGP and not by you. However, consistent with the goals of the PGP and this consent form, the PGP will attempt to make this information, data or materials, including your DNA sequence data, cell lines and other related analyses and materials, freely available to you and/or to the public as described in this consent form. Ultimately, however, it will be the PGP's decision – consistent with the requirements imposed by this consent form, Harvard Medical School and applicable law – when and whether to make available such information, data and materials. The PGP is unable to guarantee if, when or in what form you will receive access to any information, data or materials as part of your participation in this study.
I stand ready to resolve the next bioethical issue at a cost of considerably less than $6 million. Just ask me.