The ethics of returning results from research studies was a topic at the 4th annual meeting on Personal genomes at Cold Spring Harbour. An increasing number of individuals are having their DNA sequenced for research projects which may identify genetic variants that have a medical significance for the individual and/or other family members. In most cases researcher are not obliged to report such information to participants; in the US federal law prohibits reporting back of these results unless they are verified in a certified lab. This creates an ethical dilemma for many researchers and is becoming an issue for physicians as well where sequencing is used to inform diagnosis and treatment and the boundaries between research and clinical application become blurred. Although differing views were aired, it is generally felt that this is an important issue to deal with in light of the increasing use of sequencing in both research studies and the clinic (see previous news).
This issue is also discussed in the PHG Foundation’s new report Next Steps in the Sequence which will be launched in London on 24th October.