With recent advances in genetics, nurses must consider their re-sponsibilities in handling genetics information and potential eth-ical implications such as informed decision-making, privacy and confidentiality of genetics information, and access to and justice in health care. The ethical principles of autonomy, fidelity, and veracity are also important (American Nurses Association, 2001).
Ethical questions relating to genetics occur in various settings and at all levels of nursing practice. At the level of direct patient care, nurses participate in providing genetics information, test-ing, and gene-based therapeutics. They provide patient care based on the values of self-determination and personal autonomy. The American Nurses Association (2001) states that patients should be as fully involved as possible in the planning and implementa-tion of their own health care; to do so, patients need appropriate, accurate, and complete information given at such a level and in such a form that they and their families can make well-informed personal, medical, and reproductive health decisions. Nurses, as the most accessible health care professionals, are invaluable in the informed consent process. Nurses can help patients clarify values and goals, assess understanding of information, protect the patient’s rights, and support their decisions. Nurses can advocate for patient autonomy in health decisions. ISONG’s Position Statement “Informed Decision-Making and Consent” (2000) provides support and guidance for nurses who are helping patients who are considering genetic testing.
Nurses need to ensure the privacy and confidentiality of ge-netics information derived from such sources as the family his-tory, genetic tests, and other genetics-based interventions. Many Americans are increasingly concerned about threats to their per-sonal privacy. Nurses must be aware of the potential ethical issues related to the privacy and confidentiality of genetics information, including conflicts between an individual’s privacy versus the family’s need for genetics information. ISONG’s Position State-ment “Privacy and Confidentiality of Genetic Information” (2002) is a useful resource.
An ethical foundation provides nurses with a holistic frame-work for handling ethical issues with integrity. It also supplies the basis for communicating genetics information to a patient, to a family, to other care providers, to community agencies and orga-nizations, and to society as a whole. In addition, it provides support for nurses facing clinical situations that involve ethical dilemmas. Principle-based ethics offers moral guidelines that nurses can use to justify their nursing practice. The emphasis is on ethical principles of beneficence (to do good) and non-maleficence (to do no harm), as well as autonomy, justice, fidelity, veracity, to help solve ethical dilemmas that may arise in clinical care. Respect for persons is the ethical principle underlying all nursing care. With an ethical foundation that is based on these principles and that incorporates the values of caring, nurses can promote the kind of thoughtful discussions that are useful when patients and families are facing genetics-related health and reproductive deci-sions and consequences (Scanlon & Fibison, 1995; ISONG, 2000).