Susan Wolf on the Ethics of GTEx

Susan Wolf
Friday, October 13, 2017

Nature News and Comment​ has just published an article about an National Institutes of Health (NIH)​-funded study on gene expression that's intended to create "a 'Google Maps' of the body, according to Kristin Ardlie of the Broad Institute of MIT and Harvard​. The study, known as GTEx, is collecting data from the tissues of deceased donors and has the goal of plugging "a gap in the search for the genetic origins of disease." Laura Siminoff, a bioethicist at Temple University​, has studied whether the families of donors truly understood the possible implications of participating in the study, and suggested that "some form of genetic counseling should be made part of the informed consent process for similar projects." Regarding the lack of a plan to return GTEx results to families, Consortium Chair Susan M. Wolf noted in the article, “'A standing policy of simply 'we will not return results' is becoming less and less common.' She noted that studies such as GTEx should plan to enable families to be identified if researchers discover, for instance, a mutation that dramatically increases the risk of cancer for relatives who inherit it."