Since 2000, when scientists announced the initial draft human genome sequence, scholars working in disability history and disability studies have sought to expand and deepen our understanding of disability in consideration of our advancing knowledge of genomics and medicine.
Now, scholars have moved beyond the medical model of disability, which emphasizes disability as impairment, loss, and morbidity, with various degrees of social isolation. Recent accounts1 have highlighted the extent to which people with disabilities have lived and continue to live full and enriching lives.
As human genome sequencing becomes more commonplace, how is the concept of disability within society being reconsidered in the context of genetic impairments, defects, or abnormalities?
To bring these evolving conversations to the broader scientific and science-interested community, the National Human Genome Research Institute (NHGRI) and the University at Buffalo Center for Disability Studies is holding a virtual, two-day symposium entitled, “Irreducible Subjects: Disability and Genomics in the Past, Present and Future”2 on October 6th and 7th, during National Disability Employment Awareness Month. The event is free and open to the public.
The symposium addresses historical and present-day constructions of disability and ableism. There is additional focus on the history and lived experiences of people with disabilities in the context of genetics and genomics. Speakers will also consider how scientific program funding language — and NIH communications — can better address the complexity of disability, health, and wellness.
This event ultimately aims to develop a fuller account of the lives and experiences of people with disabilities. The event also aligns with themes that emerged from NHGRI’s 2021 symposium, The Meaning of Eugenics: Historical and Present-Day Discussions of Eugenics and Scientific Racism.3 A continued conversation will link disability rights to wider NIH discussions and around inclusivity, intersectionality, equity, and social justice.
NHGRI highly encourages participants to ask questions during live Q&As and engage with speakers as part of our goals:
- To explore the meaning of disability today and its connections to genetics, genomics, and contemporary medicine.
- To understand the revolutionary realities and potentialities of existing and emerging genome sequencing technologies and therapies in the context of vibrant discussions of disability and social justice.
- To improve how scientists, clinicians, genetic counselors, and science communicators engage with the complexities of disability, building on numerous efforts already existing on the NIH campus and at NHGRI.
- To guide us as an Institute and NIH as we seek to further improve our dialogue with the disability community about genomic medicine and the realities of disability in the genomic era.
- To ensure that the promise of genomics and the concerns of disability studies scholars and historians are accessible to everyone.
I hope you will join us for what is sure to be an historic event!
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