Sun-Sentinel: Following 23andMe bankruptcy, ethical questions about genetic information remain | Opinion

When 15 million consumers readily sent saliva samples to the genetic testing company 23andMe, they were eager to uncover mysteries surrounding their ancestry, family traits or potential health risks.

Now that the company has filed for bankruptcy, many consumers are scrambling to delete their information before it is potentially transferred to a new owner. The genetic blueprints that provide insights into the essence of ourselves and our families deserve stronger legal solutions — ones that protect patients’ rights while considering ethical implications for family members.

While data shared with 23andMe is not considered legally protected health information in the same way medical records from doctor visits would be, the balance between a patient’s right to privacy and the duty of a physician to disclose potentially impactful health information comes into play through genetic testing that takes place postmortem.

Genetic testing performed during autopsies can often uncover incidental findings — diseases and conditions not directly related to the cause of death that the deceased did not know about in life. But while health care teams are obliged to recommend that a patient reveal potentially inherited diseases to family members, the patient has no say in whether to share that information after their death.

This leaves providers in the precarious position of determining whether it is more ethical to respect a deceased patient’s privacy or to share health information with family members, who may then have greater access to testing and preventive care.