Penn Bioethics Seminar Series: Christopher Donohue, PhD and Sarah A. Bates, MS - Virtual Only

Rehumanizing genomics: NHGRI’s history and communications efforts to confront scientific racism, ableism, eugenics

Christopher Donohue, PhD, Historian, National Human Genome Research Institute, National Institutes of Health

Sarah A. Bates, MS, Chief, Office of Communications, National Human Genome Research Institute, National Institutes of Health

Abstract: The present-day violence, stigma and vilification against vulnerable people and communities is built upon a troubling historical support of scientific racism, misogyny, ableism, and eugenics by U.S. geneticists. Drawing from published and unpublished writings of Curt Stern, Theodosius Dobzhansky and Robert Cook, among others, our presenters will show how, contrary to a widespread (and often uncritical) consensus support for eugenics and scientific racism did not diminish after WWII.  Eugenics and its practices merely took a wider variety of forms and rhetoric in scientists’ published writings and private correspondence. Genetics and genomics, for all of their revolutionary potentials, still are breeding grounds for ableism and other dehumanizing ideologies, particularly in their discussion of intellectual disability and chromosomal conditions, as well as prenatal and infant screening and diagnosis.

This vulgar misuse of genome studies is being counterbalanced by the federal science organizations, such as the National Institutes of Health, along with academic and educational partners to address these legacies. Through consortia such as the Human Pangenome Reference Consortium, DEIA efforts at the NIH, and history and communications efforts at the National Human Genome Research Institute, the genetics and genomics research community may be finally developing that critical account of its history and current practices to begin to address genomic dehumanization, towards a more equitable and just scientific future.

Dr. Christopher Donohue is a historian at the National Human Genome Research Institute (NHGRI) at the National Institutes of Health (NIH). He established the historical digital genomic holdings at the NHGRI and co-manages the History of Genomics Program.  The History of Genomics Program is a unique history and science communications effort at the NIH that uses the history and present manifestations of eugenics, scientific racism, ableism, heteronormativity and their complex connections to contemporary genomics and medicine to facilitate meaningful and difficult conversations that promote equity and confront past and present wrongs.  He has also conducted over 60 oral history interviews, which cover all aspects of modern biology, genetics and genomics.  He has also organized or co-organized several meetings and symposia.

Sarah Bates is the chief of NHGRI’s Office of Communications (OC). Previously, as a public affairs specialist for the National Science Foundation (NSF), Bates led communications for the Engineering Directorate and the BRAIN Initiative, covering complex and sensitive topics such as gravitational waves, sexual harassment, and disaster relief. Through that work, she earned the NSF Director's Award for Excellence Pioneer. Bates has a Master of Arts in Journalism, a Master of Science in Astronomy, and a Bachelor of Arts in Physics and English.

More information: Mary.Pham@pennmedicine.upenn.edu