A prominent disabilities activist spoke against the use of genetic editing to eliminate diseases from birth because it would be tantamount to a "genocide" against the culture of the disabled.
Alice Wong, who served on President Barack Obama's National Council on Disabilities, is the founder of the
Disability Visibility Project. In a Dec. 19 episode of "Flash Forward," a podcast that considers the social repercussions of hypothetical future developments, Wong
discussed the possibility of human-embryo gene editing reaching a point at which certain disabilities can be treated at (or before) birth and thus eradicated.
"We're talking about removal of diseases," she said. "That's forever. That's a change -- a modification -- that will be passed on to future generations. So that's actually genocide. It's a form of eugenics where certain lived experiences are seen as undesirable and unimaginable."
Wong, who has spinal muscular atrophy, relies on machine ventilation. "My life is better" thanks to medical advancements, she said. But when it comes to CRISPR -- the gene-editing tool that has recently been used
for the first time on human babies to prevent HIV transmission -- Wong is worried that the ethical implications have not been fully considered.
"A lot of this conversation [around CRIPSR] is about the removal of suffering and pain and disease," she said. "Whenever I hear stuff like that -- they're talking about me, people of my community."
.....Rebecca Cokley, who -- like Wong -- served on Barack Obama's National Council on Disabilities, offered a similar perspective in a Washington Post op-ed
last year. She argued that disabled people are a community unto themselves and that eliminating their conditions means erasing the potential future of their culture. She asked, "Where is the line between what society perceives to be a horrible genetic mutation and someone’s culture?"
