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

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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.

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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.

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Authors and Affiliations

  1. University of Plymouth, Drake Circus, Plymouth, PL4 8AA, UK

    Savio S. Mathew

  2. Clinical Genetics Department, Leicester Royal Infirmary, Leicester, LE1 5WW, UK

    Julian Barwell

  3. Genomic medicine, St. Mary’s Hospital, Manchester Academic Health Science Centre, Central Manchester University Hospitals NHS Foundation Trust, Manchester, M13 9WL, UK

    Nasaim Khan

  4. Melbourne Genomics Health Alliance, c/o WEHI, 1G Royal Parade, Parkville, VIC 3052, Australia

    Ella Lynch

  5. The Ethox Centre, Nuffield Department of Population Health, Old Road Campus, University of Oxford, Oxford, OX3 7LF, UK

    Michael Parker

  6. Division of Primary Care, University of Nottingham, 13th Floor, Tower Building, University Park, Nottingham, NG7 2RD, UK

    Nadeem Qureshi

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  1. Savio S. Mathew
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This article is part of the Topical Collection on Inclusion of Diverse Populations In Genomics Research and Health Services: A Scientific and Health Equity Imperative

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Mathew, S.S., Barwell, J., Khan, N. et al. Inclusion of diverse populations in genomic research and health services: Genomix workshop report. J Community Genet 8, 267–273 (2017). https://doi.org/10.1007/s12687-017-0317-5

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