Resta Rejoinder to: Taubman’s “Letter to the Editor”

Excerpt

I agree with Dr. Taubman that we need a better system for encouraging patients to bank their DNA. However, I am not convinced that DNA should be banked by commercial labs that also run genetic tests. While it would be very convenient for patients and clinicians, I am concerned that labs and other entities would be too tempted to mine such a vast wealth of DNA samples for their own ends. More rigorous legal controls and severe penalties need to be in place—beyond mere signing of an informed consent document—to ensure that samples are not used for noble or not so noble unintended purposes. There must be an absolute hands-off policy and severe penalties for infractions. In addition, guidelines need to be in place for dealing with continuity of storage and family access during the inevitable business cycles of corporate failures, mergers, buyouts, etc. Perhaps too some lessons can be learned from the experience with using stored newborn blood spots for purposes other than screening for inborn errors of metabolism. …