Journal of Community Genetics

, Volume 8, Issue 4, pp 267–273 | Cite as

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

  • Savio S. Mathew
  • Julian Barwell
  • Nasaim Khan
  • Ella Lynch
  • Michael Parker
  • Nadeem Qureshi
Original Article
Part of the following topical collections:
  1. Inclusion of Diverse Populations In Genomics Research and Health Services: A Scientific and Health Equity Imperative

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.

Keywords

Disparities Genetic services Ethnic minorities Indigenous populations Genomic research 

Notes

Acknowledgements

We thank Sylvia Metcalfe, Emma Kowal, Vence Bonham and the Melbourne Genomics Health Alliance for their contribution to the “Genomix” disparities workshop at ESHG 2016 conference which formed the basis of this paper. We are also grateful to Ming Lim for comments on manuscript and Genome England for sponsoring Naz Khan’s participation in the disparity workshop at ESHG 2016 conference.

Compliance with ethical standards

The authors declare that they have no conflict of interest.

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Copyright information

© Springer-Verlag GmbH Germany 2017

Authors and Affiliations

  • Savio S. Mathew
    • 1
  • Julian Barwell
    • 2
  • Nasaim Khan
    • 3
  • Ella Lynch
    • 4
  • Michael Parker
    • 5
  • Nadeem Qureshi
    • 6
  1. 1.University of Plymouth, Drake CircusPlymouthUK
  2. 2.Clinical Genetics Department, Leicester Royal InfirmaryLeicesterUK
  3. 3.Genomic medicine, St. Mary’s Hospital, Manchester Academic Health Science CentreCentral Manchester University Hospitals NHS Foundation TrustManchesterUK
  4. 4.Melbourne Genomics Health AllianceParkvilleAustralia
  5. 5.The Ethox Centre, Nuffield Department of Population HealthOld Road Campus, University of OxfordOxfordUK
  6. 6.Division of Primary CareUniversity of NottinghamNottinghamUK

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