Position Statement:
Informed Decision-Making and Consent: The Role of Nursing
Approved: September 30, 2000
Revision approved 4 April, 2005
Background
Brief Statement of Need/Importance
Genetic testing can now be used for screening, diagnosis, management, treatment or health and reproductive decision-making. The benefits of genetic testing range from early detection for treatable disorders to prevention by health planning before the onset of symptoms for those who are at risk for a genetic disorder. Genetic testing should be carried out within the context of voluntariness, informed consent and confidentiality. Nurses, as the omnipresent health care provider, have a central role in providing information and support to clients in the multiphase processes of genetic testing. With genetics knowledge, nurses can advocate, educate, counsel and support clients during the informed decision-making and consent process.
It is the Position of ISONG that:
- Professional nurses are responsible for alerting clients about their right for an informed decision- making and consent process before genetic testing.
- Professional nurses should advocate for client autonomy, privacy, and confidentiality in the informed decision-making and consent process.
- Professional nurses should ensure that the informed decision-making and consent process includes discussion of benefits and risks including the potential psychological and societal injury by stigmatization, discrimination, and emotional stress, in addition to, if any, potential physical harm.
- Professional nurses should be aware of the criteria that delineate research versus clinical uses of genetic tests, and advise clients of the status of a specific test.
- Professional nurses who have an established relationship and are providing ongoing care to a client contemplating genetic testing should augment the informed decision-making and consent process by assisting the client in the context of the client's specific circumstances of family, culture, and community life.
- Professional nurses should integrate into their practice the guidelines for practice (e.g. informed consent, privacy and confidentiality, truth telling and disclosure, and non-discrimination) identified by the American Nurses Association. " Advance practice nurses in preparation for providing genetic services should receive appropriate education that includes knowledge of the implications and complexities of genetic testing, ability to interpret results, and knowledge of the ethical, legal, social, and psychological consequences of genetic testing.
- Health care professionals should collaborate to maximize the potential for the client to make an informed decision.
Background
ISONG supports an interactive process with an emphasis on the informed decision-making authority of the client to choose either to accept or reject genetic testing. Pivotal to accomplishing this process is a dialogue between the client and the providers in a joint endeavor to facilitate informed decision making and consent. This educational and informative dialogue should occur at the level of language and comprehension of the competent client. Nurses should encourage clients to seek information and identify concerns before giving informed consent. The nursing process can be universally utilized to assist clients contemplating any type of genetic testing and to ascertain whether essential elements of informed consent are present in the decision making process.
References:
- American Nurses Association (2001). Code of Ethics for Nurses with Interpretive Statements. Washington, DC: Author.
International Society of Nurses in Genetics (ISONG) (January 27, 2000). ISONG Testimony to Secretary's Advisory Committee on Genetic Testing (SACGT).
- International Society of Nurses in Genetics (in press). Statement on the Scope and Standards of Genetics Nursing Practice. Washington, DC: American Nurses Association.
Posted on 7/19/05
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