ACMG: Genomic Data Sharing is Critical to Improving Health Care
“The only way that the medical community is going to be able to make sense of the massive amount of genetic information that is now being generated is through broad and responsible sharing among researchers, clinical laboratories and the clinic.”
This is the view of a position statement from the American College of Medical Genetics and Genomics, published last year in Genetics in Medicine.
While data sharing should not compromise individual privacy, the report argues, the value of open data as a resource for clinical laboratories and treating physicians, and as clinical validity data for laboratories and manufacturers, is significant.
There are an estimated 5,000 – 7,000 rare genetic diseases, each of which can vary dramatically and be caused by a multitude of different genetic changes. Even common diseases with genetic influences may also have rare variants that influence the risk of disease or how severe the disease might be. The report argues that a single provider, laboratory, medical center, or even state cannot possess sufficient knowledge about genetic conditions in order to deliver the best care possible for patients in isolation.
The goal is to harness the massive amounts of genetic data available to improve patient care, continue to improve critical genetic testing, and ultimately deliver on the promise of personalised medicine.
“The only way that the medical community is going to be able to make sense of the massive amount of genetic information that is now being generated is through broad and responsible sharing among researchers, clinical laboratories and the clinic. If we do it in the way that the ACMG statement lays out, genomic medicine can be harnessed to benefit the health of all,” said James P. Evans, MD, PhD, co-author of the new ACMG Position Statement.
Michael Watson, executive director of the ACMG added that “Ultimately, Genomic Data Sharing is going to be critical to advancing what we know about the genetic aspect of both rare and common diseases.”
“Responsible sharing of genomic variant and phenotype data will provide the necessary information to improve patient care and to empower those who are developing tests and treatments for patients to continue to improve genetic testing. ACMG believes everyone should have access to the best medical information and that it shouldn’t be held as intellectual property or a trade secret.”