Institutional ethics consultation services for biomedical scientists have begun to proliferate, especially for clinical researchers. We discuss several models of ethics consultation and describe a team-based approach used at Stanford University in the context of these models. As research ethics consultation services expand, there are many unresolved questions that need to be addressed, including what the scope, composition, and purpose of such services should be, whether core competencies for consultants can and should be defined, and how conflicts of interest should be mitigated. We make preliminary recommendations for the structure and process of research ethics consultation, based on our initial experiences in a pilot program.
Clinical genetic research is often regarded as more ethically problematic than other forms of research, and in some countries is subject to specific regulation, requiring researchers to follow specialised guidelines. In this paper, an approach to enhancing the ethical conduct of genetic research is proposed, which is believed to be more effective than simply attempting to follow general guidelines. The potential concerns, likely areas of misunderstanding and negative reactions of the participant group are systematically investigated before starting a study on genetics. This would constitute, in effect, an ethical pilot study, similar to a feasibility pilot study to test equipment, procedures and logistics. The findings of the ethical pilot study would be used to help in designing ethically important aspects of research protocol, such as recruitment procedures, written and other information for potential participants, informed consent processes and reporting of results including ambiguous or uncertain results.
Institutional ethics consultation services for biomedical scientists have begun to proliferate, especially for clinical researchers. We discuss several models of ethics consultation and describe a team-based approach used at Stanford University in the context of these models. As research ethics consultation services expand, there are many unresolved questions that need to be addressed, including what the scope, composition, and purpose of such services should be, whether core competencies for consultants can and should be defined, and how conflicts of interest should be mitigated. We make preliminary recommendations for the structure and process of research ethics consultation, based on our initial experiences in a pilot program.
The major goal for this project, as originally proposed, was production of a multimedia, interactive CD-ROM entitled, "The New Genetics: Courseware for Physicians. Molecular Concepts, Applications, and Ramifications." We will refer to this edition as the CFP version of the courseware. We made arrangements for the CFP version to carry continuing medical education (CME) credits through the Stanford Office of Postgraduate Medical Education. However, as the courseware production moved along, we were surprised to receive many requests for the courseware from non-physician audiences. Consequently, we produced a second version that did not carry CME credits. This version is entitled, "The New Genetics: Medicine and the Human Genome. Molecular Concepts, Applications, and Ramifications." For simplicity, we will refer to this edition as the MHG version of the courseware. We therefore produced two simultaneous editions of the courseware, the CFP version carrying up to 20 CME credits and the MHG version for a wide variety of audiences.As we noted in the above abstract, Stanford University chose not to commercialize these multimedia CDs. The Stanford Office of Technology Licensing offered to license the courseware back to the authors (Tobin and Boughton) if a business entity was formed to accept the license. Therefore Twisted Ladder Media was founded to commercialize the original editions of the two CD-ROMs, and information from these efforts has influenced our plans for the courseware and its derivatives. Please see the Twisted Ladder Media web site for further information about this commercial venture: http://www.twistedladdermedia.comThe original rationale for creating the CFP courseware was to make it possible for physicians to gain necessary expertise about genetic tests, which are entering the marketplace at an increasing rate. Because use of such tests requires expertise and counseling skills, and because such tests are sometimes aggressively marketed (in some cases, directly to the public), it is critical for physicians to gain knowledge about appropriate uses of such tests.The CFP version of the courseware received a glowing review in the Journal of the American Medical Association's genome issue (Nov. 14, 2001) and has been adopted by the Mayo Clinic for training of their residents in internal medicine. Based on these evaluations and on user feedback (evaluation cards are included with every CD sold) we are confident that the courseware is of very high quality and is relevant to physicians. However, Twisted Ladder Media has not had the resources necessary to carry out commercial promotions targeting the physician market. At the same time, the MHG version that does not carry CME credits has sold exceptionally well, considering that Twisted Ladder Media is a small company advertising mostly by word of mouth. To date, Twisted Ladder has sold over 1500 copies of the MHG version and 200 copies of the
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