Patient confidentiality vs disclosure of inheritable risk: A survey-based study

Background: As the field of genetic medicine advances and- more tests for genetic diseases become available, a dilemma of legal and ethical importance will be increasingly encountered by family physicians. Protecting the confidentiality of a patient with a genetic disease when the patient's family is at risk for inheriting the disease is a conflict that more and more physicians will be forced to address. Methods: In March 2003, osteopathic family physicians in New Jersey were given a vignette in which a patient reveals that he has a genetic disease and demands that the information be kept confidential. The physicians were then given a 33-item questionnaire asking their opinions about disclosing an untreatable and a treatable disease to each of the patient's children and their mother, a former spouse. Also, physicians' opinions on larger issues were gathered, such as potential legal consequences of their actions and state laws in this area. Correlations between physicians' opinions and their demographic characteristics were also explored. Data were analyzed using Pearson product moment correlations and repeated-measures analyses of variance. Results: Physicians tended to agree that adult children should be told if the disease were treatable, and these physicians were willing to accept responsibility for deciding whom to tell. With regard to the characters in the vignette, physicians felt comfortable telling the 22-year-old daughter, were unsure about telling the 17-year-old son, and would not tell either a former spouse or the 12-year-old son. The respondents agreed that state laws should permit disclosure rather than require it, and they did not think state laws should forbid it. Conclusion: The authors recommend that states draft a definitive public policy about when, how, and whether to disclose pertinent medical information to those at risk for inheriting a genetic disease.