23 May 2018

High Risks in the new Veteran DNA Database

The Veterans Affairs Office of Research & Development has funded a national "voluntary" research program called the Million Veteran Program (MVP).  Its goal is to study how genes affect the health of those veterans who are receiving their care in the VA Healthcare System.  MVP's goal is learn more about how genes affect health, to improve health care for veterans, and to build one of the world's largest medical databases of health information (including blood samples and DNA.)  The Office of Research & Development claims the data collected will be stored in a secure manner and coded so researches cannot directly identify the patients.  

According to an interview by Channel 9 WCPO Cincinnati of VA Staff Physician and Research John Harley he explained "The tube we have is marked with a barcode so your name isn't on that.  You're completely protected."  (This is hardly an explanation of the security controls required for storing private health information and redacting participant identifiable information!)  The article also mentions researchers will study diabetes, cancer, PTSD, and other military related illnesses such as burn pit (carcinogen) exposures from tours in Iraq.

The activities expected of its veteran volunteers include filling out surveys about health and behaviors, providing a blood sample (for genomic analyses of DNA), and agreeing to future contact.  According to the program's website outline, the risks for participants besides the blood draw itself are the distress possbilities while filling out the survey about family health conditions they may not have been previously aware of. (This raises major concerns for a potential new approach for the VA denial for those with service connected disabilities.)   In addition, MVP will not give participants results of the blood tests which they claim is due to controls within the regulation Clinical Laboratory Improvement Ammendments (CLIA).  (As a government funded program, typically a patient should have access to their own health records.)

]]>