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

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.

Enhancing inclusion of diverse populations in genomics: A competence framework

“…A study exploring the views of people from UK Black African and Black Caribbean communities showed a lack of organizational commitment, economic support, policies, practice, strategic vision, and leadership in engaging these participants in the 100,000 genomes project (Skyers, 2018). Literature focusing on ethnic disparities in genomic research has shown the need for a global approach, strategic vision, funding, development of skilled workforce, and community engagement programs promoting equitable access to genomics (Bentley et al, 2017; Mathew et al, 2017), but little progress has been made yet.…”

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

“…There are also populations that will need further consideration and engagement; patient groups, Aboriginal and Torres Strait Islanders communities, and cultural and linguistically diverse communities. Based on other work, these groups are likely to have different perspectives and expectations on sharing of clinical genomic data and biological samples for research purposes (11,17,34,35).…”

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

“…Participants were provided with a written information sheet prior to starting the online questionnaire. (17) 149 (12) 126 (10) 156 (13) Police using genomic databases with my details to investigate crimes 474 (38) 141 (11) 137 (11) 142 (12) 339 (27) Receiving information about my future health that has no treatment option 431 (35) 194 (16) 191 (15) 155 (13) 262 (21) My family finding out about my health results 242 (20) 140 (11) 140 (11) 142 (12)…”