Recommendations to Researchers for Aiding in Increasing American Indian Representation in Genetic Research and Personalized Medicine

Overview

Journal Per Med

Specialties General Medicine
Genetics

Date 2020 Dec 17

PMID 33332195

Citations 8

Authors

Dana M Carroll

Carol Hernandez

Greg Braaten

Ellen Meier

Pamala Jacobson

Abbie Begnaud

Erin McGonagle

Linda Bane Frizzell

Dorothy K Hatsukami

Affiliations

Soon will be listed here.

Abstract

Increasing American Indian/Alaska Native (AI/AN) representation in genetic research is critical to ensuring that personalized medicine discoveries do not widen AI/AN health disparities by only benefiting well-represented populations. One reason for the under-representation of AIs/ANs in research is warranted research distrust due to abuse of some AI/AN communities in research. An approach to easing the tension between protecting AI/AN communities and increasing the representation of AI/AN persons in genetic research is community-based participatory research. This approach was used in a collaboration between a tribe and academic researchers in efforts to increase AI/AN participation in genetic research. From the lessons learned, the authors propose recommendations to researchers that may aid in conducting collaborative and respectful research with AI/AN tribes/communities and ultimately assist in increasing representation of AIs/ANs in personalized medicine discoveries.

Citing Articles

Competing interests: digital health and indigenous data sovereignty.

Cordes A, Bak M, Lyndon M, Hudson M, Fiske A, Celi L NPJ Digit Med. 2024; 7(1):178.

PMID: 38965365 PMC: 11224364. DOI: 10.1038/s41746-024-01171-z.

American Indian and Alaska Native recruitment strategies for health-related randomized controlled trials: A scoping review.

Redvers N, Larson S, Rajpathy O, Olson D PLoS One. 2024; 19(4):e0302562.

PMID: 38687762 PMC: 11060564. DOI: 10.1371/journal.pone.0302562.

Genetic research with Indigenous Peoples: perspectives on governance and oversight in the US.

Garrison N, Carroll S Front Res Metr Anal. 2023; 8:1286948.

PMID: 38078202 PMC: 10702594. DOI: 10.3389/frma.2023.1286948.

Tribal Tobacco Use Project II: Planning, Implementation, and Dissemination Using Culturally Relevant Data Collection among American Indian Communities.

Roland K, Anderson M, Carroll D, Webber A, Rhodes K, Poupart J Int J Environ Res Public Health. 2022; 19(13).

PMID: 35805376 PMC: 9265766. DOI: 10.3390/ijerph19137708.

Centering racial justice for Black/African American and Indigenous American people in commercial tobacco product regulation.

Breland A, Carroll D, Denlinger-Apte R, Ross J, Soto C, White C Prev Med. 2022; 165(Pt B):107117.

PMID: 35716811 PMC: 9722549. DOI: 10.1016/j.ypmed.2022.107117.

References

Yuan N, Bartgis J, Demers D . Promoting ethical research with American Indian and Alaska Native people living in urban areas. Am J Public Health. 2014; 104(11):2085-91. PMC: 4202957. DOI: 10.2105/AJPH.2014.302027. View

Park S, Tiirikainen M, Patel Y, Wilkens L, Stram D, Le Marchand L . Genetic determinants of CYP2A6 activity across racial/ethnic groups with different risks of lung cancer and effect on their smoking intensity. Carcinogenesis. 2016; 37(3):269-279. PMC: 5014092. DOI: 10.1093/carcin/bgw012. View

Christopher S . Recommendations for conducting successful research with Native Americans. J Cancer Educ. 2005; 20(1 Suppl):47-51. DOI: 10.1207/s15430154jce2001s_11. View

Robertson K . Active listening: more than just paying attention. Aust Fam Physician. 2005; 34(12):1053-5. View

Derby K, Cuthrell K, Caberto C, Carmella S, Franke A, Hecht S . Nicotine metabolism in three ethnic/racial groups with different risks of lung cancer. Cancer Epidemiol Biomarkers Prev. 2008; 17(12):3526-35. PMC: 2599805. DOI: 10.1158/1055-9965.EPI-08-0424. View

Spratt D, Chan T, Waldron L, Speers C, Feng F, Ogunwobi O . Racial/Ethnic Disparities in Genomic Sequencing. JAMA Oncol. 2016; 2(8):1070-4. PMC: 5123755. DOI: 10.1001/jamaoncol.2016.1854. View

Schnoll R, Patterson F, Wileyto E, Tyndale R, Benowitz N, Lerman C . Nicotine metabolic rate predicts successful smoking cessation with transdermal nicotine: a validation study. Pharmacol Biochem Behav. 2008; 92(1):6-11. PMC: 2657225. DOI: 10.1016/j.pbb.2008.10.016. View

Espey D, Wu X, Swan J, Wiggins C, Jim M, Ward E . Annual report to the nation on the status of cancer, 1975-2004, featuring cancer in American Indians and Alaska Natives. Cancer. 2007; 110(10):2119-52. DOI: 10.1002/cncr.23044. View

Park S, Murphy S, Wilkens L, Stram D, Hecht S, Le Marchand L . Association of CYP2A6 activity with lung cancer incidence in smokers: The multiethnic cohort study. PLoS One. 2017; 12(5):e0178435. PMC: 5444837. DOI: 10.1371/journal.pone.0178435. View

10.

Mowls D, Campbell J, Beebe L . Race and Gender Disparities in Lung Cancer Incidence Rates, 2001-2010. J Okla State Med Assoc. 2016; 108(11):482-7. PMC: 4788019. View

11.

Wallerstein N, Duran B . Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity. Am J Public Health. 2010; 100 Suppl 1:S40-6. PMC: 2837458. DOI: 10.2105/AJPH.2009.184036. View

12.

Minkler M . Community-based research partnerships: challenges and opportunities. J Urban Health. 2005; 82(2 Suppl 2):ii3-12. PMC: 3456439. DOI: 10.1093/jurban/jti034. View

13.

Sterling R . Genetic research among the Havasupai--a cautionary tale. Virtual Mentor. 2012; 13(2):113-7. DOI: 10.1001/virtualmentor.2011.13.2.hlaw1-1102. View

14.

Katigbak C, Foley M, Robert L, Hutchinson M . Experiences and Lessons Learned in Using Community-Based Participatory Research to Recruit Asian American Immigrant Research Participants. J Nurs Scholarsh. 2016; 48(2):210-8. PMC: 5296612. DOI: 10.1111/jnu.12194. View

15.

Carroll D, Wagener T, Stephens L, Brame L, Thompson D, Beebe L . The relationship between nicotine metabolism and nicotine and carcinogen exposure among American Indian commercial cigarette smokers and electronic nicotine delivery system users. Addict Behav. 2018; 92:58-63. PMC: 7237066. DOI: 10.1016/j.addbeh.2018.10.038. View

16.

Murphy S, Park S, Thompson E, Wilkens L, Patel Y, Stram D . Nicotine N-glucuronidation relative to N-oxidation and C-oxidation and UGT2B10 genotype in five ethnic/racial groups. Carcinogenesis. 2014; 35(11):2526-33. PMC: 4216060. DOI: 10.1093/carcin/bgu191. View

17.

Murphy S . Nicotine Metabolism and Smoking: Ethnic Differences in the Role of P450 2A6. Chem Res Toxicol. 2017; 30(1):410-419. PMC: 8205229. DOI: 10.1021/acs.chemrestox.6b00387. View

18.

Allenby C, Boylan K, Lerman C, Falcone M . Precision Medicine for Tobacco Dependence: Development and Validation of the Nicotine Metabolite Ratio. J Neuroimmune Pharmacol. 2016; 11(3):471-83. PMC: 5479354. DOI: 10.1007/s11481-016-9656-y. View

19.

Forster J, Poupart J, Rhodes K, Peterson-Hickey M, Lamont G, DSilva J . Cigarette Smoking Among Urban American Indian Adults - Hennepin and Ramsey Counties, Minnesota, 2011. MMWR Morb Mortal Wkly Rep. 2016; 65(21):534-7. DOI: 10.15585/mmwr.mm6521a2. View

20.

Tanner J, Tyndale R . Variation in CYP2A6 Activity and Personalized Medicine. J Pers Med. 2017; 7(4). PMC: 5748630. DOI: 10.3390/jpm7040018. View