Should patients have the same right to access their genetic information from a laboratory as they would a copy of their MRI, X-rays, or physical exam records? We believe the answer is clearly yes, which is why today we filed the firstcomplaint seeking to guarantee patients’ rights to their own genetic data.
The stakes are high. On one side are four patients asserting privacy rights under the Health Insurance Portability and Accountability Act, commonly known as HIPAA, which guarantees access to their entire health record. On the other side is a corporate laboratory with a vested interest in maintaining proprietary control over patient data.
Two of the patients are Barbara Zeughauser and Ken Deutsch, cousins who have lost many family members to breast, lung, and pancreatic cancers. In 2009, Barbara obtained genetic testing and found out that she had an uncommon mutation of the BRCA1 gene that is linked to significantly higher cancer risk. Two years ago, Ken was diagnosed with metastatic bladder cancer and also tested positive for the same genetic variant. That knowledge gave him hope, as doctors thought he would be more responsive to the type of chemotherapy that he was receiving, and following treatment, there is no evidence of cancer.