SHOULD SCIENCE EDIT OUT GENETIC DISORDERS? BY NICOLE RODER

IS A NEW SCIENTIFIC BREAKTHROUGH IN THE TREATMENT OF GENETIC DISORDERS TANTAMOUNT TO EUGENICS? SOME PEOPLE CLAIM IT IS.

Scientists have successfully modified the DNA of a human embryo to erase a genetic and lethal heart condition. The experiment, published August 2 in the journal Nature, used a tool known as CRISPR, or Clustered Regularly Interspaced Short Palindromic Repeats, and was the first to successfully “correct” a gene mutation in human embryos. Reactions to this news range from excitement to horror. Soon we could have the technology to help parents who carry genes for genetic disorders to conceive children free of those traits. But should we?

Some of the strongest opposition to CRISPR has come from people with genetic disorders themselves. Far from hoping for a path to prevent their children from inheriting pathogenic genes, some people with genetic conditions fear science may soon “wipe out” people like them. They feel a strong, cultural bond to others who share their traits, and they say large-scale gene editing to eradicate those traits would effectively decree people like them “unfit” for the human lineage. A few have compared gene editing to the eugenics movement of the 1920s, when people living in poverty were subjected to forced sterilization.

Alice Wong, director of the Disability Visibility Project, has a neuromuscular disability that requires her to use a wheelchair to move around and a ventilator to breathe. “Calling the usage of CRISPR to eliminate disabled people a form of eugenics is not hyperbolic,” says Wong. “Disabled people, regardless of what type, are part of a heterogeneous community with a history, language and culture. When science starts to weed out specific disabilities based on ableist beliefs, a part of disability culture dies. We all lose out when we don’t embrace diversity in all of its forms, even ones that challenge our ideas of health, wellness and normalcy.”

Julia Bascom, an autistic person and director of the Autistic Self-Advocacy Network, agrees. “CRISPR is literally about getting rid of ‘bad genes.’ Yes, it’s eugenics. That is the definition of eugenics.”

Bascom went on to say that she would be horrified if scientists were able to edit out autism, effectively ensuring that autistic people would not exist in future generations. “As a gay woman, I don’t understand why folks generally agree that it wouldn’t be acceptable for no more women or LGBT individuals to be born, but think this other core part of who I am is up for that kind of debate.”

Part of the problem, disabled adults say, is that most of society has an uninformed view of what it’s like to have a disability. Many nondisabled people believe that anyone with a disability would automatically want to be cured, but this isn’t true. In fact, some people with disabilities see this as ableism.

“It is a statement that I do not belong and should not exist,” says Wong. “Already, as a disabled person in the United States, I don’t feel accepted and valued. People pity me because they think my life is full of misery and suffering.”

In reality, Wong is happy with her life. She doesn’t see her disability as a loss but rather as a characteristic that gives her strength and a unique perspective of the world.

Many people with disabilities also feel connected to one another. They don’t want to give up their identities as disabled people, or the communities they’re associated with.

Lauren Bryant is a college student living with a genetic disorder called osteogenesis imperfecta. It causes weak bones and muscles and requires Lauren to use a wheelchair. She says when she was younger, she used to hope for a cure. But as she’s grown more involved in the disabled community, she no longer feels that way. “I’ve realized that if I didn’t have a disability, I don’t think I’d be the same person. I’ve been shaped by my life experience.”

Rebecca Cokley is a senior fellow at the Center for American Progress, and she has achondroplasia, the most common form of dwarfism. She says her disability hasn’t held her back but has actually brought her opportunities she wouldn’t have had otherwise. “I can honestly say that I may not have been able to work in the Obama White House had I not been born a little person.” And Cokley has an impressive résumé. She is the former executive director of the National Council on Disability, and she’s done stints in the Departments of Education and Health and Human Services. She credits her ability to understand discrimination and thus successfully perform her roles to the fact that she is disabled.

However, not every disabled person sees their disability in the same light. For example, though she loves her community and treasures her disabled identity, Bryant also says, “I would love to get rid of some of the unpleasant parts of my disability. For example, I’m often in pain; I break bones really easily. If I could somehow get rid of that and keep everything else, that would be fine. But I don’t want to get rid of every part of my disability. I don’t want to lose my identity as a disabled person.”

Martyn Kitney, a father and person with facioscapulohumeral muscular dystrophy, agrees. He says of his disability, “It has definitely shaped me as the person I am today. I would happily have it myself but wouldn’t wish it upon anyone, including my children.” For that reason, Kitney thinks the eradication of genes for genetic disorders is a great thing, but urges caution. “It can

limit the amount of suffering that many people with genetic disorders go through. However, I think it can be a controversial area where some people may see a genetic fault that needs to be removed, where others wouldn’t necessarily see the issue.” He points to Down syndrome as an example.

Many parents fear having a child with Down syndrome. In Europe, about 92% of Down syndrome pregnancies are terminated, and the abortion rate of babies with this disorder in the U.S. is around 67%. In Iceland, abortion of babies with the genetic disorder is so widespread that only one or two babies with Down syndrome are born there each year. Disability advocates have long fought against this trend, pointing to the fact that people with Down syndrome often live happy, fulfilling lives. Most of them have cognitive delays that are mild or moderate, and are able to hold jobs, have families and participate in their communities.

Still, there are people with genetic disorders who would love to see their conditions eradicated through gene editing. Thomas Jepsen has Charcot Marie Tooth, or CMT, a rare disorder that mainly causes problems with the feet and hands. He says of CRISPR, “It would be great to know that one day I won’t have the symptoms of CMT anymore, and that all the others, especially those that are more affected, have a brighter future ahead.”

When asked if he would use CRISPR on himself or his children if given the opportunity, Jepsen said, “Yes. No one deserves a life with CMT. Babies are already screened for different defects, and this would give them the possibility to live a normal life, which I am very much in favor of.”

Lynn Julian Crisci is a chronic pain patient with a connective tissue disorder, Ehlers-Danlos Syndrome. She says, “Personally,

and I can only speak for myself, I would rather not live with chronic pain. If my parents had this option before I was born, I would rather they would have edited my genes to eliminate any connective tissue disorders.”

It is clear from these conversations that people with genetic disorders are not a homogenous group with a single, shared opinion on gene editing. So what should the scientific community do? How do we best serve disabled people’s needs without trampling their rights?

Cokley says, “I think it comes down to bodily autonomy. People need to have a choice in whether or not they want to be cured.”

She also believes that when doctors and researchers think about gene editing, people with genetic disorders should have a seat at the table. “We need for pharma and science to talk to us when they’re thinking about doing something that affects us. And we need to have public conversations. We need nondisabled people to have conversations with disabled people. We need more understanding, even though it might be awkward or uncomfortable. We need to have the conversation.” Indeed, a thoughtful conversation is in order.