Inclusion of American Indians and Alaskan Natives in Large National Studies: Ethical Considerations and Implications for
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ORIGINAL ARTICLE
Inclusion of American Indians and Alaskan Natives in Large National Studies: Ethical Considerations and Implications for Biospecimen Collection in the HEALthy Brain and Child Development Study Ludmila N. Bakhireva 1,2
&
Camille Nebeker 3 & Pilar Ossorio 4 & Jyoti Angal 5 & Moriah E. Thomason 6,7 & Julie M. Croff 8
Accepted: 9 October 2020 # Springer Nature Switzerland AG 2020
Abstract This manuscript is the result of an interdisciplinary team approach to examine the ethical and cultural considerations of biospecimen collection among American Indian and Alaskan Native (AIAN) communities for the planned Healthy Brain and Child Development (HBCD) study. We begin by reviewing a brief history of the treatment of AIAN communities by the US government and within research studies. Based in part on this history, we highlight the overlapping and intersecting vulnerabilities of AIAN communities, including historical trauma, poverty, lack of healthcare access, and environmental hazards. After consideration of ethical and legal implications, we introduce our recommendations for biospecimen collection/biobanking with AIAN communities in the context of population-representative, multi-site, national studies. We recommend the following key considerations: (1) authentic partnership development; (2) beneficence to the community; (3) culturally respectful research design; (4) meaningful consent to support enrollment and retention; (5) culturally appropriate data management. Adherence to a culturally aware approach for inclusion of underrepresented communities assures external validity in the national studies and increases likelihood of bidirectional value exchange. Keywords American Indians and Alaskan Natives . Tribal communities . Biospecimen . Ethics . HBCD study
Introduction Non-indigenous researchers working with indigenous communities have a long history, including recent examples, of unethical, insensitive, exploitative, and stigmatizing research practices (Garrison et al., 2019). This history, viewed in the larger context of genocide, oppression, and marginalization by the US government, has led many indigenous people and communities to mistrust biomedical research. However,
* Ludmila N. Bakhireva [email protected] 1
College of Pharmacy Substance Use Research and Education (SURE) Center, University of New Mexico, 1 University of New Mexico, MSC 09 5360, Albuquerque, NM 87131, USA
2
Division of Epidemiology, Biostatistics, and Preventive Medicine; Department of Internal Medicine, School of Medicine, Albuquerque, NM, USA
3
Department of Family Medicine and Public Health, School of Medicine, University of California, San Diego, La Jolla, CA, USA
indigenous individuals and communities, like all individuals and communities, desire solutions to dire health problems. This manuscript is the result of an interdisciplinary team approach to examine the ethical and cultural considerations of biospecimen collection among American Indian and Alaskan Native (AIAN) communities for the planned HEALthy Brai
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