Cancer Predisposition Genetic Testing and Risk Assessment Counseling
Individuals who are at significantly 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 can improve their length and quality of life (Kirk, Lea, & Skirton, 2008). Despite apparent advantages, genetic testing raises ethical, legal, and social concerns and dilemmas associated with revealing an individual’s genetic makeup. The purpose of cancer risk assessment and counseling prior to genetic testing is to educate an individual and family about the benefits and risks associated with predisposition genetic testing (Lashely, 2006).
It Is the Position of ONS That
- Cancer risk assessment, counseling, and predisposition genetic testing are components of comprehensive cancer care available to high-risk individuals and families.
- Healthcare providers who offer services in cancer risk assessment and counseling have advanced education in human genetics and oncology.
- The standard of care in cancer predisposition genetic testing includes comprehensive risk assessment and evaluation, thorough discussion of cancer risk management options, informed consent, pre- and post-test counseling, and follow-up by qualified healthcare providers (Tranin, Masny, & Jenkins, 2003).
- Ethical principles of doing good, doing no harm, respect for autonomy, and justice form the ethical foundation of cancer risk testing and 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 (Lashley, 2006; Williams, Skirton, & Masny, 2006).
- Comprehensive cancer genetic counseling is provided in a manner consistent with an individual's cultural and healthcare beliefs.
- Education about the importance of patients sharing their genetic test results with close family members is emphasized in the pretest genetic counseling session.
- Barriers to cancer predisposition genetic counseling and testing in diverse populations are assessed regularly and action is taken to reduce these barriers.
- Oncology nurses advocate at all government levels for legislation to protect against genetic discrimination in Oncology Nursing Society Position employment, education, and access to health or life insurance.
- Oncology nurses advocate for access to cancer predisposition genetic counseling, testing, and risk-reduction strategies for all high-risk individuals and families.
- Ongoing education of healthcare providers, individuals at increased risk, and the lay public is developed, evaluated, and disseminated.
- A research agenda in clinical cancer genetics includes the efficacy of programs for cancer prevention and early detection, the psychological impact of cancer predisposition genetic testing on patients and their families, and long-term outcomes of testing and risk-management strategies (Williams et al., 2006).
- Efforts to improve the standardization and regulation of laboratories that provide cancer predisposition genetic testing are evaluated and monitored.
References
- Kirk, M., Lea, D., & Skirton, H. (2008). Genomic health care: Is the future now? Nursing and Health Science, 10(2), 85–92.
- Lashley, F.R. (2006). Essentials of clinical genetics in nursing practice. New York: Springer Publishing.
- Tranin, A.S., Masny, A., & Jenkins, J. (Eds.). (2003). Genetics in oncology practice: Cancer risk assessment. Pittsburgh, PA: Oncology Nursing Society.
- Williams, J.D., Skirton, H., & Masny, A. (2006). Ethics, policy and educational issues in genetic testing. Journal of Nursing Scholarship, 38(2), 119–125.
Approved by the ONS Board of Directors, 8/97; revised 8/00, 7/02, 10/04, 10/06, 3/09.
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).