The GLP aggregated and excerpted this blog/article to reflect the diversity of news, opinion and analysis.
Genetic testing company Myriad Genetics, the defendant in a landmark Supreme Court case over gene patents, is back in the spotlight — this time, for withholding genetic data from patients.
Myriad held patents on the BRCA1 and BRCA2 genes until 2013, and tested more than 1 million patients for variations in those genes that might increase a person’s risk of breast, ovarian, prostate, and other cancers.
Though Myriad no longer holds the patents on those genes, it still holds patients’ data, and has been resistant to sharing it with researchers or public databases.
Now, a group of four patients allege that the company is also resisting sharing full test results with patients themselves.
The Health Insurance Portability and Accountability Act (HIPAA), mostly known for its protections on patients’ privacy, also includes provisions guaranteeing patients access to their health information. A complaint filed by the American Civil Liberties Union claims that Myriad has violated HIPAA by refusing to provide the full genotype data that they generated from patients.
“I should have access to all the data that is generated from my body,” said Anne-Marie Ciccarella, one of the patients named in the complaint. Myriad refused to provide her test results, saying that genetic information is not included in the HIPAA rules.
Read full, original post: Patients challenge Myriad Genetics for access to their gene data