Cancer Genetics Risk Assessment and Counseling (PDQ®): Genetics - Health Professional Information [NCI] - Ethical, Legal, and Social Implications
Table 3. Comparison of Federal Legislation Addressing Genetic Coverage, Limitations, and Protections continued...
Duty to warn versus privacy
A patient with known family history of breast cancer is interested in testing for BRCA1 and BRCA2 mutation. In reviewing her family history, the health care provider realizes that the patient is not aware of an additional rare but hereditary cancer mutation in a second-degree relative, which the health center tested and confirmed in the past. After talking with her family, the patient is unable to confirm the details of the second hereditary cancer mutation and again expresses interest in BRCA1/2 testing. Does the health care provider have a "duty to warn" the patient of the unknown cancer susceptibility gene in the family, at the risk of disclosing private patient information? The following issues are important to consider in resolving this case.
- Preserving the confidentiality of the relative and informing the patient of her cancer risk are both important goals. In general, the health care professional has a "Duty to warn" when there is a high likelihood of harm if not warned, the person at risk is identifiable, the harm of nondisclosure is greater than disclosure, and only the information necessary to prevent harm is released. (Refer to the Privacy and Confidentiality: Disclosure of Patient's Genetic Information section of this summary for more information.)
- It is possible that the benefit outweighs the harm of informing the patient of the second cancer syndrome because the monitoring and management of the rare cancer are different from guidelines for the general population. Additionally both parties are identifiable. An option is to contact the relative for permission to disclose the genetic test result to the patient in question.
- If it is not possible to obtain permission to disclose, it is possible to inform the patient that she meets clinical criteria for the hereditary cancer syndrome without releasing specific information about the genetic test results of the relative.
Patient's right to know versus family member's autonomy
A patient with a family history of a hereditary cancer is interested in predictive genetic testing and convinces an affected family member, who initially expresses unwillingness, to be tested in order to establish the familial mutation. In this scenario, the surviving family member admits to feeling pressured into consenting for genetic testing. Both the patient and the affected family member are patients. What takes precedence — the patient's right to know or the family member's autonomy? The following issues are important to consider in resolving this case.
- Explore, with the patient, alternatives to testing that do not involve the participation of the unwilling family member, such as testing stored tissue of a deceased relative. (Refer to the Value of Testing an Affected Family Member First section of this summary for more information).
- If the patient does not want to consider other options and the family member has agreed to be tested without coercion or interference, inform the family member of the implications of the test results, including risks and benefits, and assess her emotional well-being prior to testing. (Refer to the Informed Consent section of this summary for more information.)