One goal of the National Human Genome Research Institute (NHGRI) is to enhance the diversity of people who participate in genomics research and in the genomics workforce to improve our knowledge of human genomics variation and genomic information for all populations. A major step in this endeavor is to reckon with the complex history of genetics.
To date, most people who have given permission for their DNA to be used for research are from European ancestry, making many populations from across the globe underrepresented in genomics research. In the past, both inaccessible and insufficient communication left research participants unclear about the benefits of their participation and how their data would be used after the studies concluded. Through honest and open dialogue and transparent communications, NHGRI seeks to understand people’s reasons for not participating in genomics studies and strives to build trust across historically marginalized populations and mitigate disparities in genomics research.
The scientific community as well as the public lack knowledge of (or misunderstand important aspects of) eugenics and scientific racism, its past, and its current manifestations. These ideologies and practices are arguably one of the key components in an overall lack of trust to participate in genomic and genetic research. The History of Genomics Program, a part of the NHGRI Office of Communications, was poised to address this topic head on in what became some of the first resources and events from a federal science agency to speak openly about these topics and connect them to modern day manifestations.
The NHGRI Office of Communications is comprised of science writers, digital media specialists, website developers, public affairs and social media experts and historians. Through remarkable collaboration across these teams the following products were created with careful attention paid to the sensitive nature of these topics as to not further exacerbate any misconceptions:
An interactive timeline highlighting key moments in the development of eugenics, with a focus on the American eugenics movement to better understand and protect against current and future discriminatory trends that misuse genetics and, through its association, genomics.
A fact sheet on eugenics and scientific racism exploring their origins, presence in the United States and across the globe, modern day manifestations and what the NHGRI is doing to address these issues.
A fact sheet on diversity in genomic research and how it is essential for improving the health of everyone.
A fact sheet on genomics and diversity in the workplace and how it is essential for fostering innovation and creativity.
A social media campaign consisting of a collection of excerpts introducing viewers to expert speakers participating in the two-day symposium described below.
A two-day virtual symposium entitled “The Meaning of Eugenics: Historical and Present-Day Discussions of Eugenics and Scientific Racism” that brought together distinguished historians of science and medicine to examine the history of eugenics and scientific racism and their complex legacies in the modern health sciences. A total of 11 sessions were presented covering topics such as the history of sterilization, race and reproduction, disability, LGBTQIA individuals and legacies of slavery all as they pertain to past eugenic practices, scientific racism and lasting implications today.
This collection of work exceeded our teams’ expectations. The symposium was the Institute’s most-attended event in 2021, while the timeline and fact sheets are quickly becoming some of our most-viewed resources. Overall, the launch of all of these assets led us to over 4 million impressions on social media throughout the release month.
The symposium and accompanying products now serve as a model for engagement with the NIH community and the wider public on sensitive, complex topics. The symposium itself was transformative and catalyzed discussion at our Institute and beyond; leaving people eager to continue these vital discussions and our team eager to create new and innovative resources and events that promote honest, transparent conversation.
The work submitted in this entry is at the forefront of greater cultural change within the scientific ecosystem to address racism and inequity.
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