The AMA was founded in part to establish the first national code of medical ethics. Today the Code is widely recognized as authoritative ethics guidance for physicians through its Principles of Medical Ethics interpreted in Opinions of AMA’s Council on Ethical and Judicial Affairs that address the evolving challenges of contemporary practice.
Genetic testing of children implicates important concerns about the minor patient’s present and future autonomy and best interests. Decisions to test must balance multiple considerations, including: likely benefits, the risks of knowing genetic status, features unique to the condition(s) being tested for (such as age of onset), and the availability of effective preventive, therapeutic, or palliative interventions.
Genetic testing is most appropriate when the results of testing will have meaningful impact on the patient’s care. It is important that patients always receive appropriate counseling. Physicians should not encourage testing unless there is effective therapy available to prevent or ameliorate the condition tested for.
Physicians may ethically provide genetic testing to inform reproductive decision making when the patient requests, but may also wish to offer broad screening to all persons who are considering having a child.
Patients who undergo genetic testing have a right to have their information kept in confidence, and a variety of state and federal laws prohibit discrimination by employers, insurers, and other third parties based on genetic information.
With the exception of genetic information (or material) collected under the jurisdiction of a coroner, medical examiner, or other medical legal officer, the release of genetic information from a physician’s records without the patient’s informed consent constitutes a breach of confidentiality. However, under limited circumstances, physicians may disclose such information to the criminal justice system.
In general, genetic manipulation should be reserved for therapeutic purposes. Efforts to enhance “desirable” traits are contrary to the ethical tradition of medicine. In addition to fundamental ethical requirements for the appropriate conduct of research with human participants, research in gene therapy or genetic engineering must put in place additional safeguards to vigorously protect the safety and well-being of participants and future generations.
Human participants who contribute to research involving DNA databanks have a right to be informed about the nature and scope of the research and must give consent for how their information may be used.