title: An analysis of research guidelines on the collection and use of human biological materials from American Indian and Alaskan Native communities.
abstract: American Indian and Alaskan Native communities have expressed concern about the use of human biological materials in research. These concerns have prompted research sponsors and professional organizations to develop guidelines for investigators working with these communities. This paper reviews research guidelines and presents recommendations that reflect "best practices" for working with North American indigenous communities in the collection, storage, and distribution of human biological materials for research. These recommendations strike a reasonable balance between three imperatives in research: (1) minimizing harm, (2) treating sample contributors with respect, and (3) promoting intellectual freedom to pursue a range of research questions. The recommendations can be used in designing appropriate methods of collecting and using human biological materials from members of American Indian and Alaskan Native communities and will likely be applicable to other historically disadvantaged communities as well.
authors.affiliation: Program in Environmental Health Policy and Ethics, National Institute of Environmental Health Sciences, USA.
authors.forename: Richard R
authors.initials: RR
authors.lastname: Sharp
authors.forename: Morris W
authors.initials: MW
authors.lastname: Foster
mesh_terms: D018070:Biological Specimen Banks / Q000941:ethics / Q000706:statistics & numerical data; D003466:Cultural Characteristics; D036281:Genetic Research / Q000941:ethics*; D017408:Guidelines as Topic; D006805:Human Experimentation / Q000941:ethics* / Q000592:standards*; D006801:Humans; D007198:Indians, North American / Q000235:genetics; D033181:Information Dissemination; D007258:Informed Consent / Q000592:standards; D004930:Inuit / Q000235:genetics; D012106:Research / Q000592:standards; D012107:Research Design; D035842:Research Subjects; D035844:Researcher-Subject Relations