When Do Family Members Have a Right to Know Genetic Information About a Patient?

Abstract

Source: Gilbar R. Communicating genetic information in the family: the familial relationship as the forgotten factor. J Med Ethics. 2007;337:390–393; doi:10.1136/jme.2006.017467Because genetic information about a patient may have implications for other family members, physicians or genetic counselors may find themselves struggling between the duty to respect patient confidentiality and the felt obligation to disclose important information to a family member of a patient. Whether family members have a right to this information is a source of vigorous debate. A patient may have an interest in maintaining the confidentiality of his or her genetic inheritance, even from family members. The usual perception of the patient and various relatives as separate parties may result in a doctor-patient relationship which focuses only on the patient’s wishes while excluding any consideration of interests other members of the family might have in that genetic information. This article from the School of Law, Netanya Academic College, Tel-Aviv, Israel, suggests an alternative, more familial understanding of medical confidentiality with regard to genetic information.The disclosure of genetic information without the consent of the patient is usually justified only to prevent serious harm or death to others. Conflicts are resolved by giving the doctor and patient discretion to decide whether to inform family members. Criteria used in considering disclosure include: the availability of treatment for the genetic condition; the availability of the genetic test and its accuracy in assessing risk; the likelihood of disease in family members; the severity of disease and the nature of the disease; and the likelihood of strong emotional reactions when family members are provided with the information. The author proposes we add consideration of the effect any decision will have on the relationships and dynamics of the particular family, thus relaxing confidentiality to “provide room for the ethics of the family, which is mainly based on care, commitment, intimacy, solidarity and mutual responsibility.” Such an addition will require deliberations between doctor and patient and within the family to determine who and when to tell, and how much will be told to each individual. The author hypothesizes that as research develops in the area of genetics, the family, rather than the individual, will be seen as the unit of care.Dr. Ross has disclosed no financial relationship relevant to this commentary. This commentary does not contain a discussion of an unapproved/investigative use of a commercial product/device.Gilbar proposes that health care practitioners who communicate genetic information to individual patients must be prepared to engage the family in the decision-making process regarding the disclosure of genetic information. He argues for considering both the expected emotional reactions of individual family members and the effect disclosure or non-disclosure may have on familial relationships and family dynamics. To do this, he acknowledges that a physician will need “close knowledge of the nature of the patient’s familial relationship.” He seeks communication and deliberation both between the doctor and patient and within the family. He argues that this “deliberative approach” requires a “relaxation of medical confidentiality and privacy.”While the deliberative approach is most often used in medicine to refer to public discourse regarding health policy,1–3 Gil-bar notes that others4 have used it in the context of ethics and communication in health care decision-making about genetic information. This approach focuses less on the actual outcome and more on creating a decision-making process that allows for growth of moral development and moral agency.4Even if one were to agree with Gilbar that 1) patients should acknowledge the interests of family members in decision-making, and 2) it is optimal when patients can explore the familial implications of genetic tests with their biological families, it is not clear that Gilbar’s conclusion to relax confidentiality based on deliberative methodology is valid. While this approach may help patients accept that it may be best to share information and to involve family members, physicians do not necessarily have the moral authority to demand that patients share information within their family or that patients must always involve their families.4 Even after deliberation, there may be cases in which it is appropriate for decisions “to be the concern of individual patients alone irrespective of the wishes and interests of their families.”4 While the health care practitioner should offer to mediate and to provide a safe environment for familial discussions to take place, in some cases patients may demand strict confidentiality. The relaxation of medical confidentiality can be encouraged, but not enforced!When trying to find a path through deep weeds it is best to have a partner. Faced with a felt need to disclose a patient’s genetic information and a sense that such disclosure will be problematic, the prudent clinician will consult early in the process with a knowledgeable third party – such as a Hospital Ethics Committee – before getting lost in this ethical swamp.