The Legal Column: Keeping genetic secrets

Winter 2004, Vol. 11, Issue 1

By Leonard H. Glantz, JD
Professor of Health Law
Boston University School of Public Health

On September 16, 2003 the New York Times ran a story in its science section entitled "When a Doctor Stumbles on a Family Secret." The article was about what to do when it is determined that the apparent father of a child is not the child's biological parent. Should one tell the child? The mother? The "father?" Indeed, unlike the title of this article, this was not a family "secret;" it could well be that no one knew the truth until the biological testing was done.

In the coming era of widespread genetic testing and counseling, many people will discover information about themselves that might have importance for others. Unlike other medical tests, genetic testing provides possible information about families, as well as about the individual. For example, a woman who finds out that she has the BRCA1 gene and therefore is at higher risk for breast cancer than the general population also has information that might be useful to her sister - particularly her identical twin. The question then becomes, is there some obligation to share that information with the untested, but possibly at-risk, sister?

Like other good ethical and legal quandaries there are strong arguments on both sides. The two principles involved are the obligation of physicians to keep private patient information secret, and the desire to aid another person to avoid harm. It is also a question that presents the issue of weighing positive long-term social goals against positive short-term benefits. The reason both law and ethics safeguard patient privacy is because it is felt that in order for patients to disclose their most personal and embarrassing health concerns, patients have to feel secure that what their doctor knows about them will remain secret. Both individuals and the general society benefit from this doctrine, as patients will not be discouraged from getting treatment by the fear of gossip. On the other side of the argument is the desire to make disclosures to protect others from possible harm.

Generally the law does not require one person to act for the benefit of another unless there is some relationship between the people that requires such action. It should be obvious that a doctor is obligated to act to attempt to save the life of a patient who has had a sudden heart attack. But a stranger who sees the person having a heart attack is under no legal obligation to perform CPR even if the stranger is well trained to do so. In the law we would say that the doctor has a duty to the patient as a result of the doctor-patient relationship but strangers have no duty to other strangers. How does this pertain to the genetic testing and counseling scenario? If it is determined, for example, that a woman has the BRCA1 gene, is she or the doctor required to inform her sister? In general the legal answer is "no." Neither the tested sister nor the doctor has a legal duty to protect the health or safety of the untested sister. The doctor has no relationship with the untested sister at all, so how could he have such a duty? The untested sister is a "stranger."

Difficult questions generally embody some twists and turns in deriving an answer and this one is no exception. In 1976 the California Supreme Court decided a case entitled Tarasoff v. The Regents of the University of California, ¹ in which the parents of a college student who had been murdered sued the murderer's therapists and the school that employed them for the therapists' failure to protect their daughter from harm. The murderer had disclosed his intent to kill the young woman, Tatiana Tarasoff, to the school psychologist in the course of treatment, and the psychologist and his psychiatrist colleagues took a few ineffective steps to begin commitment procedures. They asked the campus police to detain their predicted violent patient, and when the campus police released him, the psychiatrists did nothing further to protect the potential victim. At his first opportunity, the patient killed Tarasoff.

The victim's parents sued the psychiatrists arguing they did not do enough to protect their daughter, which might include warning Tarasoff of their patient's murderous intent. The psychiatrists argued that they had no duty to the victim since she was a stranger to them. The Supreme Court of California ruled that, while as a general rule individuals do not have a duty to control the actions of another to protect strangers, there are times when a "special relationship" exists that does create such a duty to strangers. While the court did not say what made the psychiatrist-patient relationship a "special" one, in general one only has a "special relationship" in circumstances where one is in a position to control another person's actions. In this case we can only guess that the California court decided the therapist-patient relationship is a "special relationship" because of the therapist's authority to commit the patient. Indeed, in the Tarasoff case the therapists began the process of exercising this authority.

This can be compared to a case following Tarasoff in which a teenage girl put her newborn child up for adoption. The adoption agency later learned from the adoptive parents that the child was afflicted with and died from severe combined immunodeficiency disease (SCID), a genetically-transmitted X-linked disease. A few years later the biological mother of the deceased child married and bore a child who died from this same disorder. She sued the adoption agency arguing it should have warned her of her risk of transmitting this genetic disease to her future children. The same court that decided the Tarasoff case found that the adoption agency had no duty to disclose this fact to the plaintiff because it had no "special relationship" with her. ² In other words, the fact that the information might have been very important to the woman was not enough to say that the adoption agency was required to inform her. This is much more analogous to the case of a doctor aware of a genetic risk to a sibling of a patient than the Tarasoff case. Furthermore, unlike the Tarasoff case, the adoption agency did not "cause" the genetic injury, which is the result of biology, not the inactions of a physician. If there is an obligation to disclose genetic information to a family member, it comes from societal norms and the moral obligation of family members to care for each other. A family member who has knowledge of genetic risks to other members can, and should, in ordinary circumstances, inform relevant family members that they may be at risk and may wish to be counseled and tested themselves. But the failure of a family member to take such action does not transform that obligation into the physician's obligation.

What flows from this for physicians and others who conduct genetic testing and counseling is the obligation to inform the tested person of the risks to other family members, and to suggest ways to make this information available to them so that the tested person has the opportunity and ability to make this knowledge available to others. Failure to adequately disclose this information to a patient makes it impossible for tested persons to understand or act on their natural desire to help family members. Indeed, there is one case in which a court explicitly adopts this as a doctor's legal obligation. ³

The second obligation rests on those physicians and counselors who feel they have a responsibility to make these disclosures about genetic risks to family members if the patient does not do so. They must inform the person to be tested that the results will not remain private. Unlike the Tarasoff situation, which presents a relatively rare circumstance, genetic tests will routinely reveal information that is often important to others.

If there are professionals who feel a need to regularly disclose this information without patient consent, they must inform patients that the ordinary rules of confidentiality and privacy will not apply. This is not only the fair thing to do, it will give a potential patient a chance to go elsewhere.

Secrecy in medicine is an ancient and socially beneficial doctrine. The sensitive secrets of patients that will be learned in the new genomic era will present the opportunity and need to apply venerable rules to novel situations.

Footnotes

¹ 17 Cal. 3d 425; 551 P.2d 334(1976).

² Olson v. Children's Home Society of California, 252 Cal. Rptr. 11, 13 (Cal. App 2 Dist. 1988).

³ Pate v. Thelkel, 661 So.2d 278 (Fla 1995).

in collaboration with
Dartmouth-Hitchcock Medical Center

The opinions expressed in the journal, Lahey Clinic Medical Ethics,
belong to the individual contributors and do not represent the institutional position
of Lahey Clinic on any subject matters discussed.