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

Mathew, Savio S.; Barwell, Julian; Khan, Nasaim; Lynch, Ella; Parker, Michael; Qureshi, Nadeem

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.

Citation

Mathew, S. S., Barwell, J., Khan, N., Lynch, E., Parker, M., & Qureshi, N. (2017). Inclusion of diverse populations in genomic research and health services: Genomix workshop report. Journal of Community Genetics, 8(4), 267-273. https://doi.org/10.1007/s12687-017-0317-5

• Journal Article Type: Article
• Acceptance Date: Jun 29, 2017
• Online Publication Date: Jul 28, 2017
• Publication Date: Oct 31, 2017
• Deposit Date: Aug 24, 2017
• Publicly Available Date: Aug 24, 2017
• Journal: Journal of Community Genetics
• Print ISSN: 1868-310X
• Electronic ISSN: 1868-6001
• Publisher: Springer Verlag
• Peer Reviewed: Peer Reviewed
• Volume: 8
• Issue: 4
• Pages: 267-273
• DOI: https://doi.org/10.1007/s12687-017-0317-5
• Keywords: Inclusion; Diverse populations; Genomic research; Health services
• Public URL: https://nottingham-repository.worktribe.com/output/890594
• Publisher URL: https://link.springer.com/article/10.1007%2Fs12687-017-0317-5
• Additional Information: The final publication is available at Springer via http://dx.doi.org/10.1007/s12687-017-0317-5.