The Future of Genetic Research
In most states, blood spots are transferred to long-term-storage banks run by state departments of health, where they are retained for at least a couple of years.
But in 12 states, samples are kept in a biobank for 21 years or longer. That's because, increasingly, health departments are using -- and sharing -- the genetic information for research and analysis.
The National Institutes of Health (NIH) awarded a contract to the American College of Medical Genetics and Genomics (ACMG) to establish a Newborn Screening Translational Research Network and develop a national repository of newborn DNA "stored by state newborn screening programs and other resources."
California, Iowa, Michigan and New York already participate in a virtual repository, which allows researchers to access data -- and in some cases the stored infant blood spots themselves -- for their investigations.
Dr. Jeffrey Botkin of the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children, which advises the Department of Health and Human Services on newborn screening.
This expansion of the newborn screening programs will continue to create new opportunities for big research ventures. As DNA sequencing becomes cheaper and more accessible, many predict whole genome sequencing will replace the current blood spot tests.
According to ACMG Executive Director Michael S. Watson, the NIH has already awarded research grants to explore the feasibility of integrating whole genome sequencing into newborn screening.
The New England Journal of Medicine, "23andMe has suggested that its longer-range goal is to collect a massive biobank of genetic information that can be used and sold for medical research and could also lead to patentable discoveries." "The primary mission of our company is to accelerate genetic discovery."
The real money, isn't selling you a health analysis; it's in using and selling your data for biomedical research. your DNA is a treasure trove of personal information, including your eye and hair color, paternity and health.
The U.S. Armed Forces Institute of Pathology to help get its new forensic database to establish general reference points of variation among different ethnic groups
Texas Department of State Health Services (DSHS) and Texas A&M University for using stored blood spots for undisclosed research purposes.
Private commercial data banks, run by health care companies, NIH, academic and private research institutions,
FBI's Combined DNA Index System, uses for DNA become more common, genetic biobanks.