Literature DB >> 29512940

Engaging populations underrepresented in research through novel approaches to consent.

Stephanie A Kraft1,2, Megan Doerr3.   

Abstract

The lack of diversity of populations included in genomics databases is an important inhibitor of genomic discovery from bench to bedside. One way to increase the diversity of participants is to ensure that informed consent processes are designed for cultural and linguistic concordance for non-majority populations. This article describes two case studies of genomics research studies that are using novel approaches to informed consent to increase recruitment and retention of participants from traditionally underrepresented populations: The Cancer Health Assessments Reaching Many (CHARM) study, part of the Clinical Sequencing Evidence-Generating Research (CSER) consortium, and the All of Us Research Program, part of the Precision Medicine Initiative. We conclude by proposing a community of practice among researchers seeking to improve informed consent to increase diversity in genomics research.
© 2018 Wiley Periodicals, Inc.

Entities:  

Keywords:  diversity; genetic and genomic research; informed consent; recruitment and retention; research ethics

Mesh:

Year:  2018        PMID: 29512940      PMCID: PMC5910200          DOI: 10.1002/ajmg.c.31600

Source DB:  PubMed          Journal:  Am J Med Genet C Semin Med Genet        ISSN: 1552-4868            Impact factor:   3.908


  19 in total

1.  Distrust, race, and research.

Authors:  Giselle Corbie-Smith; Stephen B Thomas; Diane Marie M St George
Journal:  Arch Intern Med       Date:  2002-11-25

2.  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

3.  Next generation disparities in human genomics: concerns and remedies.

Authors:  Anna C Need; David B Goldstein
Journal:  Trends Genet       Date:  2009-11       Impact factor: 11.639

4.  Genomics is failing on diversity.

Authors:  Alice B Popejoy; Stephanie M Fullerton
Journal:  Nature       Date:  2016-10-13       Impact factor: 49.962

5.  Reframing Consent for Clinical Research: A Function-Based Approach.

Authors:  Neal W Dickert; Nir Eyal; Sara F Goldkind; Christine Grady; Steven Joffe; Bernard Lo; Franklin G Miller; Rebecca D Pentz; Robert Silbergleit; Kevin P Weinfurt; David Wendler; Scott Y H Kim
Journal:  Am J Bioeth       Date:  2017-12       Impact factor: 11.229

6.  Genetic Misdiagnoses and the Potential for Health Disparities.

Authors:  Arjun K Manrai; Birgit H Funke; Heidi L Rehm; Morten S Olesen; Bradley A Maron; Peter Szolovits; David M Margulies; Joseph Loscalzo; Isaac S Kohane
Journal:  N Engl J Med       Date:  2016-08-18       Impact factor: 91.245

7.  A randomized study of multimedia informational aids for research on medical practices: Implications for informed consent.

Authors:  Stephanie A Kraft; Melissa Constantine; David Magnus; Kathryn M Porter; Sandra Soo-Jin Lee; Michael Green; Nancy E Kass; Benjamin S Wilfond; Mildred K Cho
Journal:  Clin Trials       Date:  2016-09-23       Impact factor: 2.486

8.  Utilization of a Smartphone Platform for Electronic Informed Consent in Acute Stroke Trials.

Authors:  Diogo C Haussen; Shannon Doppelheuer; Kiva Schindler; Jonathan A Grossberg; Mehdi Bouslama; Meagan Schultz; Hilarie Perez; Alex Hall; Michael Frankel; Raul G Nogueira
Journal:  Stroke       Date:  2017-10-06       Impact factor: 7.914

9.  Evaluation of a breast/ovarian cancer genetics referral screening tool in a mammography population.

Authors:  Cecelia A Bellcross; Amy A Lemke; Laura S Pape; Angela L Tess; Lorraine T Meisner
Journal:  Genet Med       Date:  2009-11       Impact factor: 8.822

10.  A multimedia consent tool for research participants in the Gambia: a randomized controlled trial.

Authors:  Muhammed Olanrewaju Afolabi; Nuala McGrath; Umberto D'Alessandro; Beate Kampmann; Egeruan B Imoukhuede; Raffaella M Ravinetto; Neal Alexander; Heidi J Larson; Daniel Chandramohan; Kalifa Bojang
Journal:  Bull World Health Organ       Date:  2015-03-23       Impact factor: 9.408

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  12 in total

1.  Recruiting for diversity: a pilot test of recruitment strategies for a national alcohol survey with mail-in genetic data collection.

Authors:  Karen G Chartier; Priscilla Martinez; Cory Cummings; Brien P Riley; Katherine J Karriker-Jaffe
Journal:  J Community Genet       Date:  2021-01-04

2.  Understanding as an Ethical Aspiration in an Era of Digital Technology-Based Communication: An Analysis of Informed Consent Functions.

Authors:  Stephanie A Kraft; Nanibaa' A Garrison; Benjamin S Wilfond
Journal:  Am J Bioeth       Date:  2019-05       Impact factor: 11.229

3.  Informed Consent in Two Alzheimer's Disease Research Centers: Insights From Research Coordinators.

Authors:  Christine M Suver; Jennifer K Hamann; Erin M Chin; Felicia C Goldstein; Hanna M Blazel; Cecelia M Manzanares; Megan J Doerr; Sanjay J Asthana; Lara M Mangravite; Allan I Levey; James J Lah; Dorothy F Edwards
Journal:  AJOB Empir Bioeth       Date:  2020-03-16

4.  Genetic counselors on the frontline of precision health.

Authors:  Michael J Bamshad; Pilar L Magoulas; Karin M Dent
Journal:  Am J Med Genet C Semin Med Genet       Date:  2018-03-26       Impact factor: 3.908

5.  A roadmap for precision medicine research recruitment: empirical assessment of the public's willingness to participate.

Authors:  Kelsey Moriarty; Susan M Wolf; Patricia M Veach; Bonnie LeRoy; Ian M MacFarlane; Heather A Zierhut
Journal:  Per Med       Date:  2020-08-17       Impact factor: 2.512

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

Authors:  Jennifer K Wagner
Journal:  Ethn Dis       Date:  2019-12-12       Impact factor: 2.006

7.  Practices and Attitudes toward Returning Genomic Research Results to Low-Resource Research Participants.

Authors:  Megan B Raymond; Kayla E Cooper; Lisa S Parker; Vence L Bonham
Journal:  Public Health Genomics       Date:  2021-07-06       Impact factor: 2.132

8.  Cancer Disparities and Health Equity: A Policy Statement From the American Society of Clinical Oncology.

Authors:  Manali I Patel; Ana Maria Lopez; William Blackstock; Katherine Reeder-Hayes; E Allyn Moushey; Jonathan Phillips; William Tap
Journal:  J Clin Oncol       Date:  2020-08-12       Impact factor: 50.717

9.  Recruiting diversity where it exists: The Alabama Genomic Health Initiative.

Authors:  Thomas May; Ashley Cannon; Irene P Moss; Mariko Nakano-Okuno; Sharonda Hardy; Edrika L Miskell; Whitley V Kelley; William Curry; Kelly M East; Aras Acemgil; Julie Schach; Stephen O Sodeke; Mona N Fouad; Robert D Johnson; James Cimino; Jaimie L Richards; Sara J Knight; Bruce Korf
Journal:  J Genet Couns       Date:  2020-03-27       Impact factor: 2.717

10.  Assessing Parent Decisions About Child Participation in a Behavioral Health Intervention Study and Utility of Informed Consent Forms.

Authors:  Stephanie A Kraft; Kathryn M Porter; Devan M Duenas; Erin Sullivan; Maya Rowland; Brian E Saelens; Benjamin S Wilfond; Seema K Shah
Journal:  JAMA Netw Open       Date:  2020-07-01
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