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In ESHG-ASHG Discussion, Researchers Consider Paths to Socially Just Global Genetics

NEW YORK — Can global genetics initiatives be made more socially just and how? This question was taken up by panelists representing Africa, Asia, Europe, and North America during a session at the European Society of Human Genetics annual meeting, held online this week.

During the event, the experts agreed that more must be done to address disparities not only in research but also in the implementation of findings in local healthcare settings.

"It's a famous story that genome-wide association studies have been mostly carried out for people of European descent, while many have yet to work on African and Asian populations," said Kazuto Kato, a researcher of biomedical ethics and public policy at Osaka University in Japan. He deemed the dearth of genetics research on Africans and Asians an "input issue," which is compounded by an "output issue" of translating findings from study into clinical practice.

"Cost is a factor, too," said Kato. The genomics community must consider what is the implementation strategy for medically relevant findings and try to ensure these advancements are equally distributed around the world, Kato said.

Kato spoke during the "ESHG-ASHG Building Bridges: Global genetics towards a socially just practice" session at the conference, involving speakers from both ESHG and the American Society of Human Genetics. He noted that such international meetings were good places to address injustice in genomics research and cited the International Federation of Human Genetics Societies in particular as a forum that could tackle the topic of inequality. "We should exchange more about the societal aspects of genetics within scientific communities," said Kato. "There might not be coherence, but sharing and understanding the situation is important."

Kato also stressed that in addition to addressing issues of ethnic and gender inequality in science, healthcare infrastructure and insurance schemes needed to be strengthened to address disparities in delivering genetic findings to patients, a point that fellow panelist Barbara Prainsack, head of the department of political science at the University of Vienna, agreed with.

"I think what is really clear is how the quality and the access to basic healthcare systems are shaping who can benefit from more sophisticated technologies and how people benefit," said Prainsack. "It is literally the foundation for precision and personalized medicine, and the success of socially just genetics."

Prainsack said that while Europe might maintain an image as a developed region with superior healthcare services, it also suffers from disparities, not only between but also within countries, and even between neighborhoods of cities. She noted that inequality is rising in European communities, a problem laid bare by the impact of the COVID-19 pandemic, where poorer, disadvantaged communities have been hit harder by the disease.

Prainsack stressed that better data sharing was one step toward socially just genetics, and that there should be an effort to better study underrepresented people in genetic research, as well as to roll out inclusive practices to ensure they are included in studies.

This focus on inclusiveness could also be extended toward supporting research led by local scientists in different regions, noted Jantina de Vries, an associate professor of bioethics at the University of Cape Town in South Africa. De Vries said that African researchers are continuously challenged in terms of seeking funding for their work, training and mentoring opportunities, and access to infrastructure, which she noted meant not only instruments but also reagents and internet services.

Furthermore, African researchers suffer from pervasive discriminatory beliefs and stereotypical attitudes, she said. The genomics community needs to reckon with system bias, she explained, be it patriarchy, which values the achievements of men over women, or white supremacy, which values the contributions of Europeans over all others. "Systemic bias does not only influence African scholars, it influences scholars worldwide," said de Vries.

One means to address these systemic biases is to support research by local scientists who know what questions to ask, how to translate findings into health policy, and who understand the values and culture of the people they are studying. De Vries cited the H3Africa initiative, which supports studies by African-led research teams, as an example of how systemic bias can be mitigated, calling the effects of H3Africa on research on the continent as "absolutely marvelous."

Charmaine Royal, an associate professor at the Institute for Genome Sciences & Policy at Duke University in the US, noted during the discussion that some researchers believe that social justice is a theme beyond the remit of genetics, but in fact scientists have a role to play in supporting it.

"Though some may feel that race and racism are society's problem, there are others who recognize that science is part of society and also informs of what happens in society, and genetics is part of academia," said Royal.

She said that the concept of racial hierarchy needed to be done away with in the sciences, and referred to the Truth, Racial Healing, and Transformation strategy, created by the Kellogg Foundation, as providing one path forward to achieving this. One aspect of the strategy is narrative change, and Royal said that scientists could help the public to reconsider its view of race.

"The genetics community more than many other academic communities can lend and bring expertise to that," she said.