A new position paper from the American College of Physicians (ACP) offers guidance regarding ethical decision-making for the integration of precision medicine and genetic testing into internal medicine. ACP’s advice is published in Annals of Internal Medicine.
The paper was developed by ACP’s Ethics, Professionalism and Human Rights Committee in response to the issue of rapid advances in genome sequencing technology that have generated a range of genetic testing technologies that can contribute to precision medicine. Like many new technologies, these testing approaches have the potential to improve health care but can pose ethical questions. The position paper states that:
As with any medical testing, genetic testing should be guided by the best interests of the patient, scientific evidence, and ethical standards. Testing must be clinically indicated for the patient and consideration must be given to whether the results of the test will affect clinical decision-making. The benefits of genetic testing are greatest when it is used to answer an actionable clinical question and the findings can be translated into treatment recommendations.
Physicians should engage with patients in discussions about the opportunities and ethical challenges of genetic testing and precision medicine.
Physicians can assist patients in understanding the risks, benefits, and uncertainty of direct-to-consumer genetic medical testing. ACP discourages the use of direct-to-consumer genetic medical testing and advises that testing should be done in the context of a patient-physician relationship, with appropriate counseling.
Genetic testing raises new challenges for privacy and the use and protection of patient information.
The position paper is intended to complement and provide more specificity to the guidance outlined in the ACP Ethics Manual, which identifies a number of issues associated with precision medicine including the broad implications of genetic testing including for family members, incidental findings, education for physicians and patients, counseling needs, privacy and confidentiality concerns, costs and possible consequences such as the discovery of unwanted information or discrimination. Precision medicine, defined as individualized care based on knowledge of a person’s genetics, lifestyle, and environment, encompasses a wide spectrum of uses of genetic information including predictive risk testing, risk assessment, diagnostic testing, pharmacogenomics, molecular profiling of tumors, population screening, and direct-to-consumer genetic testing.