In mid-April, the Supreme Court is going to decide whether a company can patent human DNA. I haven’t gotten to digest all of this info, but hope that it’s helpful to anyone who wants to educate themselves on the issues.
Shobita Parthasarathy, co-director of the Science Technology and Public Policy Program at University of Michigan, gives a great introduction to this case from a business/policy perspective:
Here is the review and timeline, and key players in the case from the ACLU.
Bottom line: this case goes beyond patenting of the BRCA gene. It’s incredibly important, it’s bigger than our group of Previvors. If SCOTUS rules in favor of Molecular Pathology, it will mean:
- Scientists will be able to research the BRCA gene without being sued by Myriad.
- Researchers will be able to create a more reliable and affordable genetic test, which is currently prohibitively expensive.
Even without the patented BRCA gene, Myriad is currently holding a massive bio-bank of our genetic data, which they keep as trade secrets. They will continue to withhold their research or publish information about any new genetic mutations they find, and prevent other researchers from building upon their discoveries. This creates an incredible obstacle for advancement in cancer research. I found this quote from a NYT article back in 2011 particularly interesting:
Myriad used to share such information with a public database maintained by the National Institutes of Health, and it cooperated with academic scientists trying to analyze the mutations. But a few years ago, the company quietly stopped contributing and cooperating, in favor of building its own database.
My immediate concern, is that a company thinks it’s okay to hoard all this data that could save lives. How is that okay? And what exactly is going on in their heads?
My concerns about the bigger picture are the implications for genetic research: If Myriad wins, any company that discovers a gene can lock it away as a trade secret and sue anyone who tries to research that gene independently. That means scientists will could be blocked by companies from studying genes for other genetically linked conditions such as Alzheimer’s, Autism, Cystic Fibrosis, and others. Currently, there are over 600 different mutations which cause a high risk of breast cancer, and we only discovered the gene in 1994! We are only just beginning to understand the genetics of cancer.
We need to fight for this case like our childrens’ lives depend on it – because our children’s lives do depend on it.