Cancer Predisposition Genetic Testing and Risk Assessment Counseling

Individuals who are at increased genetic risk of cancer can be identified through cancer predisposition genetic testing. The ability to identify high-risk individuals who may benefit from cancer prevention and early cancer detection strategies has the potential to improve overall quantity and quality of life. Although the advantage to an individual seems apparent, genetic testing raises ethical, legal, and social concerns and dilemmas associated with revealing an individual’s genetic makeup. The purpose of risk assessment counseling prior to genetic testing is to educate and counsel an individual about the benefits and risks associated with predisposition genetic counseling.

It Is the Position of ONS That

• Risk assessment counseling and cancer predisposition genetic testing are components of comprehensive cancer care and should be available to appropriately selected individuals
• Healthcare providers who offer services in cancer risk assessment and counseling must have formal education in human genetics and oncology
• The standard of care in cancer predisposition genetic testing includes informed consent, pre- and post-test counseling, and follow-up by qualified healthcare providers (e.g., advanced practice oncology nurses, oncologists with specialized education in hereditary cancer genetics, certified genetic counselors with specialized training in oncology).
• Ethical principles of beneficence, nonmaleficence, respect for autonomy, and justice must form the ethical foundation of counseling services. Standards of care in cancer genetic counseling are based on these principles and are used to identify ethical dilemmas arising from cancer predisposition genetic testing and the counseling process.
• Comprehensive cancer genetic counseling must occur in a manner consistent with an individual's cultural and healthcare beliefs.
• Genetic information is important to the individual and all close family members. The importance of this information to close family members should be discussed in the genetic counseling session, and individuals should be encouraged to share their personal test results with close family members.
• Barriers to cancer predisposition genetic counseling and testing in diverse populations should be assessed regularly, and action should be taken to reduce these barriers.
• Legislation to protect against genetic discrimination in employment, education, and access to health or life insurance must be advocated at all government levels.
• Access to cancer predisposition genetic counseling, testing, and risk-reduction strategies must be advocated for all appropriately selected individuals.
• Ongoing education of healthcare providers, individuals at increased risk, and the lay public must be developed, evaluated, and disseminated.
• A research agenda in clinical cancer genetics must include the efficacy of programs for cancer prevention and early detection, the psychological impact of cancer predisposition genetic testing on individuals and their families, and long-term outcomes of testing and risk-management strategies.
• Efforts to improve the standardization and regulation of laboratories that provide cancer predisposition genetic testing must be evaluated and monitored.

Bibliography

Lowrey, K.M. (2004). Legal and ethical issues in cancer genetics nursing. Seminars in Oncology Nursing, 20, 203-208.

Mahon, S.M. (1998). Cancer risk assessment: Conceptual considerations for clinical practice. Oncology Nursing Forum, 25, 1535-1547.

Tranin, A.S., Masny, A., & Jenkins, J. (Eds.). (2003). Genetics in oncology practice: Cancer risk assessment. Pittsburgh, PA: Oncology Nursing Society.

Approved by the ONS Board of Directors, 8/97; revised 8/00, 7/02, 10/04, 10/06.

To obtain copies of this or any ONS position, contact the Customer Service Center at the ONS National Office at 125 Enterprise Drive, Pittsburgh, PA 15275-1214 (866-257-4ONS; customer.service@ons.org). Positions also may be downloaded from the ONS Web site (www.ons.org).