Late Breaking News
Million Veterans’ Data Sought to Compile Database for Study on Genomics and Exposures
- Categorized in: June 2011
Washington - VA officially kicked off a massive genomic research project last month, one the agency believes will be a “game changer” for health care at VA.
The Million Veteran Program (MVP) is an effort to consolidate genetic, military exposure, health and lifestyle information together in one single database. The database will be used by VA researchers and academic affiliates to conduct health and wellness studies and to help determine what genetic variations are associated with particular health issues.
By identifying genetically linked health conditions, the program could advance screening, diagnosis and prognosis of diseases, and point the way toward more effective, personalized therapies, VA officials said.
“If we don’t get our research right, we won’t get ourselves a state-of-the-art 21st century health-care system,” VA chief of staff John R. Gingrich said at an agency research forum last month. “We’re looking to our genomic program to be the most significant health-care initiative since the creation of the electronic medical record.”
Participation in the program is entirely voluntary. Patients who agree to participate will share their health information as well as their genetic material, with researchers. Veterans in the program will fill out surveys about their health and health-related behaviors; provide a blood sample that will be stored for future research; complete another optional, more comprehensive, health assessment; allow secure access to their VA health information, including past and future health records; and agree to allow future contact with researchers.
VA launched a pilot-project version of the program in January to test the ground and is ready to open up the project nationwide. The goal had been to register one million veterans in seven years, but, at a recent press conference, Gingrich pushed the schedule up. “This is projected to be one of the largest studies of genes and health in the nation. We have plans to reach an enrollment of one million veterans over the next seven years. However, I’m challenging VA to get it done in four,” he said.
Confidentiality Is Big Concern
The biggest concern from veterans is expected to be patient confidentiality, Gingrich noted. This is not surprising, considering the number of high-profile data leaks that have plagued VA in recent years. The largest was in 2006 when a VA employee’s laptop containing data from more than 25 million people was stolen from his home. Though the laptop was eventually recovered and it was determined that the data had not been used in any way, the incident caused serious concern among veterans regarding the safety of their personal information.
According to Gingrich, the data will only be made available to researchers with VA, other federal health agencies, and partnering academic institutions. Researchers, who must be approved to access that data, will not receive the name, address, date of birth, or Social Security numbers of the veterans involved. Also, the data will not be transferred electronically to the researchers. Instead, researchers will have to access the data through VA’s Genomic Information System for Integrative Science (GenISIS) computing environment. This system provides a remotely accessible analysis environment, so researchers can securely access data without having that data transferred and copied onto their individual computers.
Gingrich is, in a way, putting his own data safety where his mouth is, by volunteering to be a participant in the program. He, along with VA Secretary Eric Shinseki and Deputy Secretary Scott Gould, were among the first veterans included in the archive.
An unresolved issue is how to deal with patients whose genetic information indicates a problem. “The big question is, ‘What do we tell people?’,” explained Joel Kupersmith, MD, VA research chief. “Do they want to know if they have a genetic disease, [especially] one that doesn’t have a cure?”
The VA has decided to tackle those kinds of questions in light of the potential benefits.
“We’re looking to this program as a pathfinder in seeking new ways to prevent and treat illnesses,” Gingrich said. “Why are some veterans at a greater risk of developing an illness? Why do some treatments work for some veterans and not for others? How do we build resilience before the conflict?”