Along the lines of Greg’s post about genetic predisposition testing, I thought folks might be interested in knowing that the Social and Behavioral Research Branch of the National Human Genome Research Institute at NIH is conducting a study to better understand how the public is going to react to offers for high-quality genetic testing for predisposition to late-onset genetic disease (like cancer, heart disease, and diabetes). Research questions include how best to communicate the test results to participants, what to say about the meaning of the test results, and what kind of health care or life style advice to offer. With GINA (the genetic non-discrimination act) still pending in the Senate, we were also interested in knowing whether fear of insurance discrimination was a reason for declining to participate in the study. I spent the last two years working with the research team to develop this protocol, and it is now in the field and public. You can learn more about the Multiplex Initiative through an ABC report on the study. And, you can ask the PI, Colleen McBride, question about the study at here.
-Andrea Kalfoglou