title: Views on clinical trial recruitment, biospecimen collection, and cancer research: population science from landscapes of the Haudenosaunee (People of the Longhouse).
abstract: Biomedical research in culturally distinct communities is often a challenge. Potential barriers to participation occur because science is presented in a format that lacks cultural acknowledgement. Investigations may also fail to showcase beneficial relevance to the communities or include them in true partnership. The history of biomedical research within Native American societies has been complicated by these issues. Historical trauma among many Native groups sometimes transcends into contemporary challenges in both recruitment to and participation particularly in biobanking research. The participants for this study included members of the Haudenosaunee, the People of the Longhouse. Native Americans, including the Haudenosaunee, endure some of the worst health disparities in the country. These include high rates of cancer, obesity, and diabetes which may be linked at least partially to genetic predisposition. Results from a Haudenosaunee urban population shared response on ways to improve recruitment strategies for biospecimen, cancer, and other health-related clinical trials. Mixed methods approaches were used, and community responses indicated the importance of creating trust through respectful partnership; promoting culturally appropriate recruitment materials; the need for a greater understanding of consenting and signature processes; the necessity for concise summary sheets; and a desire to have information that community member understand. Discussion items also include international Indigenous perspectives to biobanking and genetic-related health disparity research.
authors.affiliation: Roswell Park Cancer Institute, Office of Cancer Health Disparities, Cancer Prevention and Population Sciences, Elm & Carlton Streets, Buffalo, NY, 14263, USA. rodney.haring@roswellpark.org.
authors.forename: Rodney C
authors.initials: RC
authors.lastname: Haring
authors.affiliation: Roswell Park Cancer Institute, Office of Cancer Health Disparities, Cancer Prevention and Population Sciences, Elm & Carlton Streets, Buffalo, NY, 14263, USA.
authors.forename: Whitney Ann
authors.initials: WA
authors.lastname: Henry
authors.affiliation: Environmental Research Institute-Faculty of Science, Dept of Management Communications-Waikato Management School, University of Waikato: Maori & Indigenous Governance Centre-Faculty of Law, Private Bag 3105, Hamilton, 3240, New Zealand.
authors.forename: Maui
authors.initials: M
authors.lastname: Hudson
authors.affiliation: Roswell Park Cancer Institute, Office of Cancer Health Disparities, Cancer Prevention and Population Sciences, Elm & Carlton Streets, Buffalo, NY, 14263, USA.
authors.forename: Elisa M
authors.initials: EM
authors.lastname: Rodriguez
authors.affiliation: Office of Public Health Studies, Native Hawaiian and Indigenous Health, 1960 East-West Road, Honolulu, HI, 96822, USA.
authors.forename: Maile
authors.initials: M
authors.lastname: Taualii
mesh_terms: D018070:Biological Specimen Banks; D035843:Biomedical Research; D002986:Clinical Trials as Topic; D005260:Female; D019538:Health Care Surveys; D006801:Humans; D007198:Indians, North American; D007407:Interviews as Topic; D008297:Male; D008913:Minority Groups; D009369:Neoplasms / Q000208:ethnology* / Q000517:prevention & control; D018579:Patient Selection; D011369:Professional-Patient Relations; D035502:Trust; D014481:United States; D014505:Urban Population
keywords: American Indian; Bio-banking; Bio-specimen research; Cancer; Cancer education; Cancer prevention; Clinical trial; Ethics; Haudenosaunee; Iroquois; Minority; Native American; Patient communication; Recruitment