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. 2020 Dec;1(4):285-294.
doi: 10.1007/s42844-020-00020-8. Epub 2020 Oct 26.

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
Affiliations

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 et al. Advers Resil Sci. 2020 Dec.

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; Biospecimen; Ethics; HBCD study; Tribal communities.

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Conflict of interest statement

Compliance with Ethical Standards Conflict of Interest Within the past year, Dr. Pilar Ossorio has undertaken paid consulting work concerning research ethics issues for Roche-Genentech and Eli Lilly. None of this work involved recruitment of or relationships with indigenous communities. Other co-authors: None.

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