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.

In the United States, patient health information is protected by the Health Insurance Portability and Accountability Act, or HIPAA, leaving the power with patients to decide whether to disclose their health diagnoses and care. People also have the option to clarify decisions about their bodies following death. Someone might outline in a will, for example, whether they want to be an organ donor. Family members and medical teams then aim to protect that decision.

An underutilized legal step is to complete an advance directive regarding end-of-life care, which details a person’s wishes for treatment in the event that they become unable to make their own health decisions. However, providers often do not discuss advance directives with patients, nor do they usually talk through whether the patient would want an autopsy and how to approach the disclosure of incidental findings from one.

Potentially 40% of autopsies can reveal additional information beyond testing conducted in life, though not all of these will be incidental. If an autopsy report contains findings about a previously unknown genetic condition, the provider will have to decide whether to inform family members.

Legal cases surrounding these options have provided differing outcomes. In Safer v. Estate of Pack, when a woman sued her father’s physician for not disclosing that his terminal colon cancer was potentially genetic, the New Jersey Supreme Court found that physicians have a duty to warn at-risk family members who could benefit from the disclosure of genetic information.

However, in Pate v. Threlkel, the Florida Supreme Court held that a physician’s duty is to warn patients of the importance of disclosing genetic information to family members, but that duty does not extend to warning family members in the absence of patient consent.

Guidance from the American Medical Association favors the Florida ruling of protecting patient privacy, though it offers exceptions when lack of disclosure could result in a “serious health hazard or harm to the patient or others.” This vague counsel leaves much open to provider interpretation.

During a pair of autopsies to investigate a traffic accident, for example, a 45-year-old man who had been asymptomatic during his life presented evidence of autosomal dominant polycystic kidney disease — a condition that a child has a 50-50 risk of inheriting. Meanwhile, a 23-year-old man presented evidence of sickle cell anemia. Though immediate family members may never present symptoms, their children could, giving the disease risk a generational impact.

Whether these examples pose serious health hazards to patients is open to interpretation, but they outline the challenges of establishing universal guidelines for postmortem disclosure of genetic findings.

Rather than burdening health teams with decisions that can greatly impact grieving families after a loss, we should prioritize greater communication with patients while they are still with us so that they can lead their own health decisions.

Patients need to be empowered to learn more about advance directives, how to make decisions about autopsies and whether they wish to share new genetic findings after death. This way, providers can feel confident that they are making decisions in the best interests of their patients.

Lauren B. Solberg, J.D., MTS, is the director of the program in bioethics, law and medical professionalism at the University of Florida College of Medicine. Brooke Ortiz, a graduating fourth-year medical student at the UF College of Medicine, contributed to this piece, and she and Solberg authored a recent research article on the topic.

This article was originally published by the Sun-Sentinel.