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...
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.)
Right to know versus right not to know
A hereditary cancer syndrome has been identified in a family. Within that family, an adult child wants a cancer susceptibility test that her parent declined, and one identical twin wants testing but the other does not. Even though the noninterested parties have declined testing and do not want to know the results, it is possible that testing one relative can disclose results for the other family members. Do the rights of the family members interested in predictive testing take precedence over the rights of the relatives who do not want to know? The following issues are important to consider in resolving this case.
- In hereditary cancer syndromes, an individual's right to know takes precedence over an individual's right not to know especially if there are early detection and prevention strategies to reduce the likelihood of morbidity and mortality.
- Since the family has a documented deleterious mutation, standard of care recommendations include guidelines for screening and monitoring. In the event that testing is not done, it is important to take "reasonable steps" to guarantee immediate family members are warned of the hereditary cancer risk. (Refer to the Privacy and Confidentiality: Disclosure of Patient's Genetic Information section of this summary for more information.)
- Pretest and posttest discussions can include the possibility of medical, psychological, and social impact on family members and strategies on how to lessen any negative impact. The patient should honor the wishes of relatives who request not to know and attempt to keep the results secret.