Ethical considerations in the design and execution of the National and Hispanic Health and Nutrition Examination Survey (HANES). 1995

D K Wagener
Office of Analysis and Epidemiology, Centers for Disease Control and Prevention, Hyattsville, MD 20782, USA.

The purpose of this article is to describe some ethical considerations that have arisen during the design and implementation of the health examination surveys conducted by the National Center for Health Statistics of the Centers for Disease Control and Prevention. Three major areas of concern are discussed: sharing information from the study, banking and using banked tissue samples, and obligations for future testing of subjects. Specific concerns of sharing information include: when to inform, whom to inform, maintaining confidentiality, and how to inform individuals. Specific concerns of determining when sera will be banked and using banked samples include: depletion of samples for quality control, obtaining informed consent for unanticipated uses, access by others, and requests for batches of samples. Finally, specific concerns regarding future testing of subjects include: retesting for verification, retesting for interpretation, testing for different risk factors, and follow-up. Although existing surveys can provide experience or even suggest guidelines, the uniqueness of any new survey will generate unique ethical problems, requiring the careful formulation of unique solutions.

UI MeSH Term Description Entries
D009309 National Center for Health Statistics, U.S. A unit of the CENTERS FOR DISEASE CONTROL AND PREVENTION. It is primarily concerned with the collection, analysis, and dissemination of health statistics on vital events and health activities to reflect the health status of people, health needs, and health resources. National Center for Health Statistics (U.S.),United States National Center for Health Statistics,National Center for Health Statistics
D009749 Nutrition Surveys A systematic collection of factual data pertaining to the nutritional status of a human population within a given geographic area. Data from these surveys are used in preparing NUTRITION ASSESSMENTS. NHANES,National Health and Nutrition Examination Survey,Nutritional Surveys,Nutrition Survey,Nutritional Survey,Survey, Nutrition,Survey, Nutritional,Surveys, Nutrition,Surveys, Nutritional
D012107 Research Design A plan for collecting and utilizing data so that desired information can be obtained with sufficient precision or so that an hypothesis can be tested properly. Experimental Design,Data Adjustment,Data Reporting,Design, Experimental,Designs, Experimental,Error Sources,Experimental Designs,Matched Groups,Methodology, Research,Problem Formulation,Research Methodology,Research Proposal,Research Strategy,Research Technics,Research Techniques,Scoring Methods,Adjustment, Data,Adjustments, Data,Data Adjustments,Design, Research,Designs, Research,Error Source,Formulation, Problem,Formulations, Problem,Group, Matched,Groups, Matched,Matched Group,Method, Scoring,Methods, Scoring,Problem Formulations,Proposal, Research,Proposals, Research,Reporting, Data,Research Designs,Research Proposals,Research Strategies,Research Technic,Research Technique,Scoring Method,Source, Error,Sources, Error,Strategies, Research,Strategy, Research,Technic, Research,Technics, Research,Technique, Research,Techniques, Research
D004992 Ethics, Medical The principles of professional conduct concerning the rights and duties of the physician, relations with patients and fellow practitioners, as well as actions of the physician in patient care and interpersonal relations with patient families. Medical Ethics
D006306 Health Surveys A systematic collection of factual data pertaining to health and disease in a human population within a given geographic area. Abortion Surveys,Abortion Survey,Health Survey,Survey, Abortion,Survey, Health,Surveys, Abortion,Surveys, Health
D006630 Hispanic or Latino A person of Cuban, Mexican, Puerto Rican, South or Central American, or other Spanish culture or origin, regardless of race (https://www.federalregister.gov/documents/1997/10/30/97-28653/revisions-to-the-standards-for-the-classification-of-federal-data-on-race-and-ethnicity). In the United States it is used for classification of federal government data on race and ethnicity. Race and ethnicity terms are self-identified social construct and may include terms outdated and offensive in MeSH to assist users who are interested in retrieving comprehensive search results for studies such as in longitudinal studies. Cuban Americans,Hispanic Americans,Latin Americans, US,Latinas,Latinos,Latinx,Puerto Ricans,Spanish Americans,Hispanics,American, Hispanic,American, US Latin,Cuban American,Hispanic American,Hispanic or Latinos,Latin American, US,Latina,Latino,Puerto Rican,Spanish American,US Latin American,US Latin Americans
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D014015 Tissue Banks Centers for acquiring, characterizing, and storing organs or tissue for future use. Tissue Banking,Bank, Tissue,Banking, Tissue,Banks, Tissue,Tissue Bank
D014481 United States A country in NORTH AMERICA between CANADA and MEXICO.

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