Page 189 - Encyclopedia of Nursing Research

156 n ETHiCS OF RESEARCH

include the Nuremberg Code, the Declaration autonomous means overall capacity for vol-
of Helsinki, and the National Commission untariness, for comprehension of infor-
E for the Protection of Human Subjects of mation, and for freedom from controlling
Biomedical and Behavioral Research (also influences during the research experience
known as The Belmont Report). Within nurs- (Beauchamp & Childress, 2009, chap. 4). if
ing, important past policy documents one or more of these factors is missing, ethi-
include the 1980, 1995, and 2003 American cal issues of autonomy arise.
Nurses Association’s (ANA, 2010c) social investigators support research partici-
policy statements. Past ethical guidelines pants’ autonomy by ensuring that voluntar-
for nursing research include the ANA’s 1975 iness, comprehension, and freedom from
and 1985 Human Rights Guidelines in Clinical controlling influences are operationalized
and Other Research as well as the ANA- through informed consent statements. These
sponsored Ethical Guidelines in the Conduct, statements typically contain purpose of the
Dissemination, and Implementation of Nursing research, duration of participants’ involve-
Research (Silva, 1995). ment, data collection processes and proce-
Current ANA documents implicitly or dures, research benefits and risks, contact
explicitly related to the ethics of research information, and information related to vol-
include (a) Code of Ethics for Nurses with untariness, anonymity, and confidentiality.
Interpretive Statements (ANA, 2001, Provision The informed consent statement also may
7), (b) Nursing: Scope and Standards of Practice ask research participants to verify that they
(ANA, 2010b), (c) Nursing’s Social Policy substantially comprehend what the research
Statement: The Essence of the Profession (ANA, entails before their written, audio, or video
2010c), (d) Guide to the Code of Ethics for Nurses: consent to participate in it. The preceding
Interpretation and Application (Fowler, 2008, informed consent process should be dynamic
chap. 7), and (e) the Center for Ethics and and ongoing.
Human Rights Web site that contains more in addition to informed consent state-
than 20 position statements on ethics and ments, and when appropriate, participants
human rights (ANA, 2010a). information may be asked to sign the Health insurance
about the preceding documents is available Portability and Accountability Privacy Rule
at the http://www.nursingworld.org Web Authorization for research (U.S. Department
site. information about federal regulations of Health and Human Services, 2004). This
and guidelines for ethical research is avail- authorization permits a covered entity to
able at the http://www.hhs.gov and http:// use or disclose a participant’s protected
www.fda.gov/oc/gcp Web sites. health information as specified by the
The ethics of research, defined as what authorization.
one morally ought to do or be in conduct- Not all research participants are sub-
ing, evaluating, disseminating, and apply- stantially autonomous. Exceptions include
ing research to practice, are based primarily pregnant women, children (unless emanci-
on ethical principles and on moral charac- pated minors), persons who are institutional-
ter. Ethical principles focus on respect for ized, and persons with mental impairments
autonomy, nonmaleficence, beneficence, and or terminal illnesses. To ensure such situa-
justice, whereas moral character focuses on tions are ethical, proxy consents are needed
virtues (Beauchamp & Childress, 2009). and, with children older than 7, both proxy
The first ethical principle—that of respect consents and children’s assent are often
for autonomy—focuses on how investigators obtained.
support substantially autonomous research Some investigators omit informed con-
participants’ decisions on whether or not to sent when the internet is used in research,
participate in research. Being substantially when informed consent could affect the