Having an understanding of the ethical, legal, and social implications (ELSI) regarding cancer genetic testing may influence the clinician's response to the complex questions and issues that may arise during the process of risk assessment and counseling. This section discusses biomedical ethics codes, legal and social issues relevant to privacy, and fair use in the interpretation of genetic information. In order to integrate the different perspectives of bioethics, law, and psychosocial influences, case scenarios are offered to illustrate dilemmas encountered in the clinical setting. (Refer to the Determining the Test to Be Used section of this summary for more information about the regulation of genetic tests.)
Bioethical Issues in Cancer Genetic Testing
Bioethical tenets can guide health care providers in dealing with the complex issues surrounding predictive testing for hereditary cancer. The tenets of beneficence, nonmaleficence, autonomy, and justice are part of a framework needed to balance the complex and potentially conflicting factors surrounding a clinician's role in respecting privacy, confidentiality and fair use of genetic information obtained from cancer genetic testing.
The concept of beneficence dictates that the primary goal of medical care is to provide benefit through appropriate health care. In the field of oncology, this translates into using early detection and effective treatment protocols to improve outcomes. Providing beneficent care may go beyond medical outcomes of treatment to encompass the patient's life circumstances, expectations, and values. Consideration of the patient's psychological and emotional ability to handle the testing and results disclosure process can help avoid doing harm. (Refer to the Psychological Impact of Genetic Testing/Test Results on the Individual section of this summary for more information.)
Nonmaleficence is the bioethical code that directs health care providers to do no harm, inclusive of physical and emotional harm, and acknowledges that medical care involves risks and benefits. Particular to the field of oncology, adherence to this construct includes taking measures to minimize the adverse effects of cancer prevention, treatment, and control. This may encompass taking precautionary measures to prevent inadvertent disclosure of sensitive information.
Autonomous decision making respects individual preferences by incorporating informed consent and education. Individuals have the right to be informed about the risks and benefits of genetic testing and to freely choose or decline testing for themselves. Additionally, it is beneficial to consider the sociocultural context and family dynamics to ensure medical decision making takes places without coercion or interference.
Justice refers to the equitable distribution of the benefits and risks of health care. A goal in oncology is ensuring access to cancer genetic services. The availability of predictive genetic testing should not be dependent on ethnic background, geographical location, or ability to pay. Genetic discrimination should not be a result of predictive testing. Equitable distribution balances individual rights with responsibilities of community membership.