Ethical Issues
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).
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