Dec 12, 2014, 9:00 AM, Posted by Lainie Ross
Lainie Ross, MD, PhD, is a 2013 recipient of the Robert Wood Johnson Foundation (RWJF) Investigator Award in Health Policy Research and a 2014 Guggenheim Fellow. During her fellowship year, she will work on a book tentatively titled, From Peapods to Whole Genomes: Incidental Findings and Unintended Consequences in a Post-Mendelian World.
Human Capital Blog: What are some of the incidental findings and unintended consequences you will discuss in your book?
Lainie Ross: First, let me explain what I mean by “incidental findings.” Incidental findings refer to unanticipated information discovered in the course of medical care or research that may or may not have clinical significance. They are not unique to genetics. In some studies, up to one in four diagnostic imaging tests have incidental findings, although most do not have immediate clinical consequences.
One example of an incidental finding that I discuss in the book involves incidental findings uncovered while screening candidates for research participation. This can range from discovering high blood pressure (known as the “silent killer”) to extra sex chromosomes in people who volunteer as “healthy controls.” This raises the question of what is a clinically significant or “actionable” finding, and what information should be returned to the research participant. These types of questions are critical, especially because many research consent forms have historically stated that “no results will be returned.”