Literature DB >> 31889769

Ethical and Legal Considerations for the Inclusion of Underserved and Underrepresented Immigrant Populations in Precision Health and Genomic Research in the United States.

Jennifer K Wagner1.   

Abstract

There has been growing recognition of the importance of diversity and inclusion of underrepresented minority populations, including immigrants, in genomic research and precision medicine. Achieving diversity has been difficult and has led some scholars to question whether the law is a help or a threat to the inclusion of underserved and underrepresented immigrant populations. In this commentary, I provide an overview of some of the many relevant legal issues affecting the inclusion of immigrants in genomic research and precision health initiatives, such as the All of UsSM Research Program. Development of research recruitment, retention, and data collection plans without also considering the legal and sociopolitical context within which such efforts are to be carried out is risky. Advancing health policy with a goal of eliminating health disparities (or, at a minimum, ensuring that health disparities are not exacerbated by genomic or precision health technologies) requires us to acknowledge the negative effects that immigration policy and criminal justice policy have on the involvement of immigrants in such research and on their health directly. I conclude that it is not a question of whether the law is a help or a threat but, rather, whether we collectively will prioritize authentic diversity and inclusion policies and also insist on compliance with the laws intended to ensure the human right of every individual - regardless of immigration status or national origin - to share in the advancement of science.
Copyright © 2019, Ethnicity & Disease, Inc.

Entities:  

Keywords:  Bioethics; Emigrants; Genomic Research; Government Agencies; Human Rights; Immigrants; Vulnerable Populations

Mesh:

Year:  2019        PMID: 31889769      PMCID: PMC6919971          DOI: 10.18865/ed.29.S3.641

Source DB:  PubMed          Journal:  Ethn Dis        ISSN: 1049-510X            Impact factor:   2.006


  22 in total

1.  Genomics for the world.

Authors:  Carlos D Bustamante; Esteban González Burchard; Francisco M De la Vega
Journal:  Nature       Date:  2011-07-13       Impact factor: 49.962

2.  Enhance Diversity Among Researchers to Promote Participant Trust in Precision Medicine Research.

Authors:  Demetrio Sierra-Mercado; Gabriel Lázaro-Muñoz
Journal:  Am J Bioeth       Date:  2018-04       Impact factor: 11.229

3.  The healthy immigrant (migrant) effect: In search of a better native-born comparison group.

Authors:  Tod G Hamilton
Journal:  Soc Sci Res       Date:  2015-08-31

4.  The clinical imperative for inclusivity: Race, ethnicity, and ancestry (REA) in genomics.

Authors:  Alice B Popejoy; Deborah I Ritter; Kristy Crooks; Erin Currey; Stephanie M Fullerton; Lucia A Hindorff; Barbara Koenig; Erin M Ramos; Elena P Sorokin; Hannah Wand; Mathew W Wright; James Zou; Christopher R Gignoux; Vence L Bonham; Sharon E Plon; Carlos D Bustamante
Journal:  Hum Mutat       Date:  2018-11       Impact factor: 4.878

5.  The Responsibility to Recontact Research Participants after Reinterpretation of Genetic and Genomic Research Results.

Authors:  Yvonne Bombard; Kyle B Brothers; Sara Fitzgerald-Butt; Nanibaa' A Garrison; Leila Jamal; Cynthia A James; Gail P Jarvik; Jennifer B McCormick; Tanya N Nelson; Kelly E Ormond; Heidi L Rehm; Julie Richer; Emmanuelle Souzeau; Jason L Vassy; Jennifer K Wagner; Howard P Levy
Journal:  Am J Hum Genet       Date:  2019-04-04       Impact factor: 11.025

6.  Policies of Exclusion: Implications for the Health of Immigrants and Their Children.

Authors:  Krista M Perreira; Juan M Pedroza
Journal:  Annu Rev Public Health       Date:  2019-01-02       Impact factor: 21.981

7.  Ethical considerations about reporting research results with potential for further stigmatization of undocumented immigrants.

Authors:  Jacqueline M Achkar; Ruth Macklin
Journal:  Clin Infect Dis       Date:  2009-05-01       Impact factor: 9.079

Review 8.  Prioritizing diversity in human genomics research.

Authors:  Lucia A Hindorff; Vence L Bonham; Lawrence C Brody; Margaret E C Ginoza; Carolyn M Hutter; Teri A Manolio; Eric D Green
Journal:  Nat Rev Genet       Date:  2017-11-20       Impact factor: 53.242

Review 9.  Evaluating the impact of immigration policies on health status among undocumented immigrants: a systematic review.

Authors:  Omar Martinez; Elwin Wu; Theo Sandfort; Brian Dodge; Alex Carballo-Dieguez; Rogeiro Pinto; Scott D Rhodes; Scott Rhodes; Eva Moya; Silvia Chavez-Baray
Journal:  J Immigr Minor Health       Date:  2015-06

10.  Barred from better medicine? Reexamining regulatory barriers to the inclusion of prisoners in research.

Authors:  Elaine Huang; Jacqueline Cauley; Jennifer K Wagner
Journal:  J Law Biosci       Date:  2017-01-10
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  3 in total

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Authors:  Miyong T Kim; Kavita Radhakrishnan; Elizabeth M Heitkemper; Eunju Choi; Marissa Burgermaster
Journal:  Am J Transl Res       Date:  2021-03-15       Impact factor: 4.060

2.  Who's included? The role of the Clinical Research Nurse in enabling research participation for under-represented and under-served groups.

Authors:  Kelly Beer; Melanie Gentgall; Nicola Templeton; Claire Whitehouse; Nicola Straiton
Journal:  J Res Nurs       Date:  2022-04-01

3.  Confronting Racism in All Forms of Pain Research: A Shared Commitment for Engagement, Diversity, and Dissemination.

Authors:  Anna M Hood; Staja Q Booker; Calia A Morais; Burel R Goodin; Janelle E Letzen; Lisa C Campbell; Ericka N Merriwether; Edwin N Aroke; Claudia M Campbell; Vani A Mathur; Mary R Janevic
Journal:  J Pain       Date:  2022-02-26       Impact factor: 5.383

  3 in total

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