Literature DB >> 28755064

Inclusion of diverse populations in genomic research and health services: Genomix workshop report.

Savio S Mathew1, Julian Barwell2, Nasaim Khan3, Ella Lynch4, Michael Parker5, Nadeem Qureshi6.   

Abstract

Clinical genetic services and genomic research are rapidly developing but, historically, those with the greatest need are the least to benefit from these advances. This encompasses low-income communities, including those from ethnic minority and indigenous backgrounds. The "Genomix" workshop at the European Society of Human Genetics (ESHG) 2016 conference offered the opportunity to consider possible solutions for these disparities from the experiences of researchers and genetic healthcare practitioners working with underserved communities in the USA, UK and Australia. Evident from the workshop and corresponding literature is that a multi-faceted approach to engaging communities is essential. This needs to be complemented by redesigning healthcare systems that improves access and raises awareness of the needs of these communities. At a more strategic level, institutions involved in funding research, commissioning and redesigning genetic health services also need to be adequately represented by underserved populations with intrinsic mechanisms to disseminate good practice and monitor participation. Further, as genomic medicine is mainstreamed, educational programmes developed for clinicians should incorporate approaches to alleviate disparities in accessing genetic services and improving study participation.

Entities:  

Keywords:  Disparities; Ethnic minorities; Genetic services; Genomic research; Indigenous populations

Year:  2017        PMID: 28755064      PMCID: PMC5614885          DOI: 10.1007/s12687-017-0317-5

Source DB:  PubMed          Journal:  J Community Genet        ISSN: 1868-310X


  60 in total

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Journal:  Science       Date:  1999-05-07       Impact factor: 47.728

2.  Informed choice in genetic screening for thalassaemia during pregnancy: audit from a national confidential inquiry.

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Journal:  BMJ       Date:  2000-02-05

3.  Ethnic minority under-representation in clinical trials. Whose responsibility is it anyway?

Authors:  Mahvash Hussain-Gambles
Journal:  J Health Organ Manag       Date:  2003

4.  High and variable frequencies of CYP2C19 mutations: medical consequences of poor drug metabolism in Vanuatu and other Pacific islands.

Authors:  A Kaneko; J K Lum; L Yaviong; N Takahashi; T Ishizaki; L Bertilsson; T Kobayakawa; A Björkman
Journal:  Pharmacogenetics       Date:  1999-10

Review 5.  Effective recruitment and retention of minority research participants.

Authors:  Antronette K Yancey; Alexander N Ortega; Shiriki K Kumanyika
Journal:  Annu Rev Public Health       Date:  2006       Impact factor: 21.981

6.  Attitudes and beliefs of African Americans toward participation in medical research.

Authors:  G Corbie-Smith; S B Thomas; M V Williams; S Moody-Ayers
Journal:  J Gen Intern Med       Date:  1999-09       Impact factor: 5.128

7.  Racial differences in the use of BRCA1/2 testing among women with a family history of breast or ovarian cancer.

Authors:  Katrina Armstrong; Ellyn Micco; Amy Carney; Jill Stopfer; Mary Putt
Journal:  JAMA       Date:  2005-04-13       Impact factor: 56.272

8.  "What are they going to do with the information?" Latino/Latina and African American perspectives on the Human Genome Project.

Authors:  Amy Schulz; Cleopatra Caldwell; Sarah Foster
Journal:  Health Educ Behav       Date:  2003-04

9.  Comprehensive evaluation of tamoxifen sequential biotransformation by the human cytochrome P450 system in vitro: prominent roles for CYP3A and CYP2D6.

Authors:  Zeruesenay Desta; Bryan A Ward; Nadia V Soukhova; David A Flockhart
Journal:  J Pharmacol Exp Ther       Date:  2004-05-24       Impact factor: 4.030

10.  Attitudes of African American premedical students toward genetic testing and screening.

Authors:  Sara L Laskey; Joseph Williams; Jacqui Pierre-Louis; MaryAnn O'Riordan; Anne Matthews; Nathaniel H Robin
Journal:  Genet Med       Date:  2003 Jan-Feb       Impact factor: 8.822

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  12 in total

1.  PopCluster: an algorithm to identify genetic variants with ethnicity-dependent effects.

Authors:  Anastasia Gurinovich; Harold Bae; John J Farrell; Stacy L Andersen; Stefano Monti; Annibale Puca; Gil Atzmon; Nir Barzilai; Thomas T Perls; Paola Sebastiani
Journal:  Bioinformatics       Date:  2019-09-01       Impact factor: 6.937

2.  Racial/Ethnic Differences in Comprehension of Biospecimen Collection: a Nationwide University of Rochester Cancer Center NCI Community Oncology Research Program Study.

Authors:  Matthew Asare; Charles E Heckler; Eva Culakova; Charles S Kamen; Amber S Kleckner; Lori M Minasian; David S Wendler; Michelle Feige; Carol J Weil; Joan Long; Sharon K Cole; Adedayo A Onitilo; Luke J Peppone; Gary R Morrow; Michelle C Janelsins
Journal:  J Cancer Educ       Date:  2020-04       Impact factor: 2.037

3.  Creating accessible Spanish language materials for Clinical Sequencing Evidence-Generating Research consortium genomic projects: challenges and lessons learned.

Authors:  Nangel M Lindberg; Amanda M Gutierrez; Kathleen F Mittendorf; Michelle A Ramos; Beatriz Anguiano; Frank Angelo; Galen Joseph
Journal:  Per Med       Date:  2021-08-27       Impact factor: 2.119

4.  Advocacy and actions to address disparities in access to genomic health care: A report on a National Academies workshop.

Authors:  Janet K Williams; Vence L Bonham; Catherine Wicklund; Bernice Coleman; Jacquelyn Y Taylor; Ann K Cashion
Journal:  Nurs Outlook       Date:  2019-06-18       Impact factor: 3.315

5.  Rethinking the ethical principles of genomic medicine services.

Authors:  Stephanie B Johnson; Ingrid Slade; Alberto Giubilini; Mackenzie Graham
Journal:  Eur J Hum Genet       Date:  2019-09-18       Impact factor: 4.246

6.  Making community voices heard in a research-health service alliance, the evolving role of the Community Advisory Group: a case study from the members' perspective.

Authors:  Janet L Wale; Louisa Di Pietro; Heather Renton; Margaret Sahhar; Christine Walker; Pamela Williams; Karen Meehan; Elly Lynch; Melissa Martyn; Jane Bell; Ingrid Winship; Clara L Gaff
Journal:  Res Involv Engagem       Date:  2021-11-27

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.  Genomics for all in the 21st century?

Authors:  Martina C Cornel; Vence L Bonham
Journal:  J Community Genet       Date:  2017-09-14

9.  Funding of Hispanic/Latino Health-Related Research by the National Institutes of Health: An Analysis of the Portfolio of Research Program Grants on Six Health Topic Areas.

Authors:  M Larissa Avilés-Santa; Laura Hsu; Tram Kim Lam; S Sonia Arteaga; Ligia Artiles; Sean Coady; Lawton S Cooper; Jennifer Curry; Patrice Desvigne-Nickens; Holly L Nicastro; Adelaida Rosario
Journal:  Front Public Health       Date:  2020-08-28

10.  Sharing genomic data from clinical testing with researchers: public survey of expectations of clinical genomic data management in Queensland, Australia.

Authors:  Miranda E Vidgen; Sid Kaladharan; Eva Malacova; Cameron Hurst; Nicola Waddell
Journal:  BMC Med Ethics       Date:  2020-11-19       Impact factor: 2.652

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