NEW YORK (GenomeWeb News) – Scripps Translational Science Institute, Navigenics, Affymetrix, and Microsoft are embarking on a decades-long study to determine the long-term behavioral effects of personal genetic testing, Scripps announced today.
Collaborators plan to offer genetic scans to up to 10,000 Scripps Health system employees, family members, and friends in the study, the first of its kind, said STSI. Ultimately, researchers are hoping to determine whether participating in personal genomic testing spurs individuals to make beneficial lifestyle changes such as improving their diet and exercise regimes.
“Genome scans give people considerable information about their DNA and risk of disease, yet questions have been raised if these tests are ready for widespread public use,” principal investigator Eric Topol, director of the Scripps Translational Science Institute, said in a statement.
The team plans to track participants’ lifestyle changes using self-reported health questionnaires. Participants will complete the questionnaires at baseline and again three and six months after receiving the personal genetic test, which is designed to assess each individuals’ genetic propensity for more than 20 health conditions, including diabetes, hearts disease, and some cancers.
Those enrolled will also be asked to participate in surveys periodically over the next 20 years. The results will be compiled in a database hosted by the Scripps Genomic Medicine program. To maintain participants’ genetic privacy, researchers will de-identify both saliva samples and health assessment questionnaires, encrypt the data, and store it in a secure database.
In addition, researchers plan to use genetic variations identified in the study to improve their understanding of the genetics underlying diseases and the application of this genetic information for preventing, diagnosing, and treating diseases.
“This collaboration is a significant step forward in empowering people to proactively address their specific individual health needs, as well as give clinical researchers access to a broader pool of genetic data to develop new disease researchers,” Peter Neupert, corporate vice president of Microsoft’s Health Solutions Groups, said in a statement.
The study will be sponsored by Navigenics, Affymetrix, and Microsoft. Affymetrix will perform the genome scans, while Navigenics will interpret the results and offer guidance on steps individuals can take to try to decrease health risks based on their personal genetic information.
Participants will be able to access this information through Navigenics’ web site and to enter and store their health and lifestyle information in a Microsoft HealthVault account, which they can share with their health care providers if desired.