We've all heard about the increasing availability of genetic testing to assess one's personal risk of developing life threatening illnesses. Possessing this information can offer dramatic incentives to alter personal lifestyles and even contribute to early detection. But having such pre-emptive testing is beyond the financial reach of most people and is not covered by traditional medical insurance.
Interestingly, genetic testing has been developed over the past decades thanks to thousands of patients who have donated their DNA via saliva swabs and blood samples without remuneration or feedback. But according to today's WSJ, "Children's Hospital Boston, breaking with scientific convention, has designed a new genetic research project so information gleaned from DNA submitted by patients and their families can benefit not only science, but potentially participants themselves."
The decision to share findings with individuals who have donated DNA for the purpose of otherwise anonymous genetic research is not only groundbreaking, it has also been fraught with issues for medical ethicists. The Journal reports that "One big reason is the concern among researchers and medical ethicists that people would be confused or alarmed by the information, which isn't always well-understood even by geneticists. Some genes confer increased risk for disease, for instance, but that doesn't mean someone will definitely get sick." But since "New technologies allow researchers to run many genetic tests at the same time, revealing potentially important health information about individuals," it appears that this is a concept whose time has come. Hakon Hakonarson, director of the Center for Applied Genomics at Children's Hospital of Philadelphia, is quoted saying that "he personally would like to give information back because that would be the right thing to do."
This process of informational exchange will inevitably present many challenges. While "a special oversight board including geneticists, ethicists and advocates weighs whether the data are scientifically valid enough to share with interested families," it remains to be seen whether the tangled web of U.S. insurance providers will sanction treatment thought necessary as a result of genetic findings.