Should We Offer Genomic Results to a Research Participant’s Family, Including After Death?
If researchers discovered a member of your family has a gene that increases risk of some types of cancer, would you want to know? If you learned you have such a gene, would you want it revealed to your relatives? These real-world dilemmas pit personal privacy against the health concerns of family members. And the explosion of research on genomics – sometimes looking at a research participant’s entire genome and identifying many gene variants of concern – makes this a pressing problem.