Genetic testing poses all kinds of questions for IRBs. Are genetic testing results potentially identifiable? Are they meaningful? Should they be returned to patients? Our current ability to do genetic testing may have outpaced our ability to answer these questions, at least for now.
When reviewing research, we sometimes are asked to put ourselves in the potential subjects’ shoes and determine which research-related information is most useful to them, and how it should be provided to them. Two recent articles in The New York Times addressed some of the complexities related to genetic testing results. While these two articles dealt with clinical, rather than research uses, of genetic testing, some of the issues they raise are germane to the research field. Of what use is it to give people genetic testing results if we are not sure what those results mean? And how would it affect a participant when we know exactly what those results mean, but there’s not much, if anything, we can do about them?
Screening for Alzheimer’s Gene Tests the Desire to Know
When Gene Tests for Breast Cancer Reveal Grim Data but No Guidance
Please click on the links above to read the articles. Contact Edith Paal at paalediths@uams.edu if you are having trouble accessing the text.