The Duke-UNC Comprehensive Sickle Cell Center proposes the establishment of a new division, the Division of Policy and Ethics, whose purpose it would be to study and to affect a range of issues not conveniently examined by working groups organized in strictly disciplinary fashion. The Division of Policy and Ethics would consider, over five years, the sickle-cell aspects of the following: general health policy; clinical guideline development, dissemination, and effect; patient tracking; professional standards development for genetic counseling; complex clinical decision-making and technology assessment; cost-effectiveness analysis; and research ethics, clinical ethics, and """"""""political"""""""" (or """"""""policy"""""""") ethics. Analytical techniques, necessarily various, would include the following: analysis of pre-existing data (such as databases and charts); observational research (as in the study of practice patterns); survey research (as in the study of patient experiences and preferences [in partnership with the Psychosocial and Clinical Divisions]); formal decision analysis (as in the specification of algorithms of care); microeconomic analysis (as in cost-effectiveness analysis); prospective clinical research (in partnership with the Clinical Division); and formal philosophical discourse (as in ethical analysis). Services provided would include services to the Center (such as consultation with other Divisions, and enhancement of collaborations with other Centers and other institutions), and services to the sickle cell community. The latter will include yearly symposia held either in the Duke-UNC area or at regional or national meetings, and the production of annotated bibliographies of policy and ethics literature related to sickle cell disease. Internal advice (as well as material and substantive intellectual assistance) would come from the already-existing Divisions. Outside advice and periodic critical review would be sought from a Board of Advisors composed of professional and lay members of the sickle cell community, local and national.
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