Genetic screening as a tool for the early detection of cancer is a significant medical innovation. When it comes to the identification of hereditary cancer syndromes through genetic screening, there is often a need to make sure that at-risk family members are warned.
“Duty to warn” as a legal issue is misunderstood by many, and existing case law as well as recommendations from professional organizations are ambiguous. This may leave physicians feeling as though they should warn at-risk family members to avoid liability when their patients seem reluctant or refuse to do so or because there is a moral obligation. But, this approach violates both the ethics of a physician-patient relationship and current privacy laws in the United States.
The bottom line, says Mark A. Rothstein, JD, director of the Institute for Bioethics, Health Policy and Law at the University of Louisville School of Medicine, is that if providers warn a patient’s relatives without their patient’s consent, they are violating current Health Insurance Portability and Accountability Act privacy laws. “Health care providers are neither required nor permitted to warn at-risk relatives without the consent of their patients,” Rothstein says in a review article published in February 2018 in Genetics in Medicine.
Instead, physicians should encourage patients deliberately but not coercively to share genetic information with relatives. In fact, prior to any genetic screening or tests, it can be helpful for physicians to talk about ground rules first. “A physician can ask his or her patient first about who should be notified if something is revealed,” Rothstein says.
After screening, Rothstein says that physicians can provide materials that are easy to understand and free of medical jargon but that also include an appropriate sense of urgency. He recommends “family sharing letters,” documents that are crafted by physicians and genetic counselors and that can be delivered by the patient to relatives. The letters contain relevant information about the genetic condition and offer assistance for counseling, for example.
“Physicians and other health care providers have legal and ethical duties to make reasonable efforts to ensure that the genetically at-risk relatives of their patients are offered appropriate warnings,” Rothstein says. “These duties can be satisfied by warning their patients and encouraging and assisting them in providing warnings to their relatives.”