Free the Data: The End of Genetic Data as Trade Secrets

摘要

For patients and their clinicians, broad access to information about DNA sequence variation is critical. The information is essential to interpreting the clinical significance of genetic variants, but it is not always readily available. At the present time, genetic test providers have the ability to create private databases containing information they have collected through testing and to restrict access to this vital information. A case study of BRCA1/2 testing by Myriad Genetics reveals the implications of creating a private database of clinical information and the importance of open access of this information. Until the June 2013 U.S. Supreme Court ruling that invalidated patents on isolated, naturally occurring human DNA, Myriad Genetics provided the only commercially available test for BRCA1/2 diagnostic testing in countries where patents were filed (for example, the United States). Myriad has tested over 1 million people and has gained valuable experience and information.