Including diverse populations in genomics
For those attending ESHG this year, or those interested in health genomics in communities with diverse populations HVP will be participating in the
following workshop. The workshop will profile the work of HVP Country Nodes and what we have learned so far from the work of the Global Globin
2020 Challenge. The presentations hope to spark discussion with a particular emphasis on what the global community of geneticists can do to
tackle these issues in a meaningful way over the next five years.
W09 Including diverse populations in genomics
THEME: Inclusion of Diverse Populations In Genomics Research and Health Services: A Scientific and Health Equity Imperative
Sunday, May 28, 2017, Copenhagen, Denmark
15:00-16:30 Room: Alicante
Martina C. Cornel, M.D., Ph.D.
Professor of Community Genetics & Public Health Genomics
Clinical Genetics & Amsterdam Public Health Research Institute
VU University Medical Center
Vence L. Bonham, Jr. J.D.
Senior Advisor to the Director on Genomics and Health Disparities
Associate Investigator, Social and Behavioral Research Branch
National Human Genome Research Institute
National Institutes of Health
Recent developments in genetics and genomics both in science and health care appear to increase socioeconomic inequalities. Health care priorities
in genetics are determined by diseases that have often been studied – i.e. in Western European and American populations. Internationally population-based
genomic studies are being rolled out, for example, the Precision Medicine initiative in the USA and the Genome England 100,000 project. Previous studies
have failed to engage underserved populations, such as, minority communities and those from lower socioeconomic backgrounds. As a consequence
these populations will not benefit from these genomic advances. Furthermore, genetic services tend to have relatively more clients from higher socio-economic
backgrounds. Access is codetermined by awareness, education and income.
The workshop will introduce strategies to improving recruitment and retention of participants from underserved populations. Broadly, considering equality of access, reducing stigmatisation and appropriate patient information on recruitment, and during the study. Furthermore, it will discuss health care disparities and potential approaches to serve all populations, including minorities of non-western ancestry and lower socio-economic status.
Charles Rotimi : Diversity and Inclusion in Genomic Research: Why the uneven progress?
Helena Kääriäinen: Genetics in an isolated population like Finland: a different basis for genomic medicine?
Helen M Robinson: Increasing the involvement of diverse populations in genomics-based health care – Lessons from Haemoglobinopathies.
The workshop theme will be the basis of a forthcoming issue of Journal of Community Genetics. If you are interested in the issues covered by this workshop and would like to contribute ideas or be involved in an on-going dialogue please contact Helen Robinson directly – firstname.lastname@example.org