PUBLICATIONS - RESEARCH DESIGN AND STATS

Ethics in Research

Privacy and Confidentiality

Informed Consent

Institutional Review Boards

Publication of Results


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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Life Care Planning Education & Research Vocational Analysis