PUBLICATIONS
- RESEARCH DESIGN AND STATS
Ethics in Research
As practitioners and researchers we have a responsibility
to protect the research subject from potential harmsincluding
psychologicalharm. This responsibility
includes preserving the privacy and confidentiality of
the patient’s
information. Federal regulations aimed at assuring these
safeguards govern research.
Maintaining the security of the research databank is a separate
concern; that only ethical research is conducted using the
information in the databank. The data should not be available
for “junk” or unscrupulous scientific endeavors.
Finally, the conduct of research carries with it the ethical
mandate to make public the findings of the scientific study,
(Bellini & Rumrill, 1999, Chap. 4; Brody, 1998; Dunn & Chadwick,
1999; Piantadosi, 1997, Chap. 3 )
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Privacy and Confidentiality
One way to assure the confidentiality of the patient’s
records is to remove the identifiers from the records. Alternatively
the identifiers can be dissociated from the records and the
key to the dissociation process kept under lock and key as
privileged information. These safeguards notwithstanding,
informed consent for the study should be obtained from the
study’s subjects as part of the eligibility of subjects
for inclusion in the study.
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Informed Consent
Subjects, who are vulnerable to manipulation and abuse such
as the very young or old, the impoverished, the sick or disabled,
etc., are owed special protection by medical researchers
(Brody, 1998; Chaps. 2 & 6; Dunn & Chadwick, 1999,
Chap. 6). By definition, all subjects involved in studies
validating the life care planning process are vulnerable
and therefore owed special protection. The informed consent
process informs the subject of the purpose of the study and
the risks to the subject. The informed consent document requires
the subject’s acknowledgement and is important in assuring
privacy and confidentiality to the study’s research
subjects.
Unscrupulous or junk science is never in the best interest
of society as a whole. The databank available within the
many caseloads of Life Care Planners should only be available
to competent, ethical researchers who will produce credible
research studies. Academic institutions or private research
foundations can function as gatekeepers in permitting access
to databanks held in their trust for appropriately designed
and executed research studies.
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Institutional Review Boards
The Institutional Review Board (IRB) of the research conducting
institution is charged with administering research according
to the Federal regulations. Some types of research are exempt
from Federal regulation, however, the exemption must be certified
by the IRB. The IRB provides ethical review of research protocols
and informed consent forms, primarily to assure the protection
of the subjects, but also to assure quality control of the
research itself. This process also essentially limits access
to data banks to authorized researchers (Brody, 1998, Chap.
2; Dunn & Chadwick, 1999, Chap. 6; Piantadosi, 1997,
Chaps. 3 & 4).
IRBs provide two other services. Administrative IRBs are
established to review proposals for research, applications
for grant funding to perform research and contractual arrangements
to conduct research with the institution. Other IRBs exist
to provide for the peer review process in publication of
research study results.
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Publication of Results
Publication of results is ethically mandated. Whether the
results of a study are negative or positive, the mandate
holds. Research uses valuable societal resources and the
information garnered is held to be public domain. If results
are not published, then the study may be repeated needlessly
by other researchers, thus wasting scarce research resources.
The most wanton waste is the unavailability of the research
resources to move the scientific knowledge base forward (Dunn & Chadwick,
1999, Chap. 7).
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