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

被引:25
|
作者
Mathew S.S. [1 ]
Barwell J. [2 ]
Khan N. [3 ]
Lynch E. [4 ]
Parker M. [5 ]
Qureshi N. [6 ]
机构
[1] University of Plymouth, Drake Circus, Plymouth
[2] Clinical Genetics Department, Leicester Royal Infirmary, Leicester
[3] Genomic medicine, St. Mary’s Hospital, Manchester Academic Health Science Centre, Central Manchester University Hospitals NHS Foundation Trust, Manchester
[4] Melbourne Genomics Health Alliance, c/o WEHI, 1G Royal Parade, Parkville
[5] The Ethox Centre, Nuffield Department of Population Health, Old Road Campus, University of Oxford, Oxford
[6] Division of Primary Care, University of Nottingham, 13th Floor, Tower Building, University Park, Nottingham
基金
英国医学研究理事会;
关键词
Disparities; Ethnic minorities; Genetic services; Genomic research; Indigenous populations;
D O I
10.1007/s12687-017-0317-5
中图分类号
学科分类号
摘要
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. © 2017, Springer-Verlag GmbH Germany.
引用
收藏
页码:267 / 273
页数:6
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