In the latest episode of Genetics Unzipped, presenter Dr Kat Arney meets some of the researchers who are working to make sure that everyone gets the benefits of genetic research – from underserved communities to entire continents.
Kat Arney chats with Charles Rotimi, director of the Centre for Genomics and Global Health within the NIH National Human Genome Research Institute at Bethesda, Maryland in the US, and a distinguished NIH investigator.
He’s also the founder of the African Society of Human Genetics and the driving force behind a major genomics project called Human Heredity and Health in Africa, or H3Africa, which he helped to establish ten years ago.
As well as talking with Kat about his journey into genetics, starting as a curious child living in Benin City, Nigeria, Charles chats about what we’ve learned so far about the genetics of African peoples, how to translate this information into health benefits across the continent, and his hopes for the future of genomics in Africa.
“I would like to see it without boundaries – I just went to see it blow up and grow in any direction that is beneficial across Africa, I want it to be a part of the economic development, and I want it to be a part of the scientific development infrastructure,” he says.
“I also would like Africa to be a part of the process of creating a global good, not just recipients of global good. I will be very happy that African scientists are indeed making wonderful strides that benefit African people. But, perhaps just as important, is benefiting the global community because we are sharing insights into the genome, where the whole genome came from.”
Kat also talks with Laura Koehly – a senior investigator at the National Human Genome Research Institute, with a special interest in helping people unlock the information hidden in their family health histories, particularly focusing on underserved and less privileged communities.
Laura and her colleagues have developed a family health history workbook that they are trialling in under-resourced Black communities in Baltimore, to help people understand more about their genetic risks of different diseases. So far, as Laura explains, it’s been a hit – and not just with the people who were given a copy.
“They shared the workbook to family members who in turn, of those who received the workbook to look at it themselves, about half of them were able to use the algorithm as well to assess their risks,” she says. “We felt like this was a highly successful endeavour in terms of the accessibility and usability of the workbook, and it appeared to activate communication processes within the family.”
Finally, Kat hears from bioethicist Sara Hull, who has worked at the National Institutes of Health for more than 20 years helping researchers make sure their work is done ethically and doesn’t cause harm to the people involved.
Her work particularly focuses on indigenous and tribal communities in the US, whose previous experiences with researchers have been less than positive, and in some cases actively harmful. And that has meant challenging some of her own perceptions about tribal communities along the way.
“Coming into this work, I had some misconceptions about tribal populations not being interested in genetics research – I had heard that some tribes had established moratoria on participating in genetics research [but when] I, through attendance at meetings and really starting to listen, I realised there was actually great interest by some tribal researchers, by some members of the community, in the power of genetics and how it might be beneficial to their communities,” she says.
“They were just worried about doing the research in a responsible tribally engaged manner that would actually translate into realising those benefits without some of the unethical approaches to reach research that many of the tribes have been harmed by.”
Listen to the Genetics Unzipped podcast
Listen to the whole episode and find show notes and a full transcript at GeneticsUnzipped.com.
Genetics Unzipped is the podcast from the UK Genetics Society, presented by award-winning science communicator Dr Kat Arney and produced by First Create the Media. Follow Genetics Unzipped on Twitter @geneticsunzip, and the Genetics Society at @GenSocUK