A Dating App would Match Couples using their Genetic Profile: the Idea Worries me

A Harvard geneticist, George Church, is developing an app that would prevent couples who carry the same recessive gene from ever meeting. The goal: to eliminate hereditary genetic diseases. Critics of the app have raised concerns that this is 21st century eugenics, but Church claims that it isn’t, and that he values diversity. The app, he says, would only eliminate the most severe genetic diseases, rather than those which he states are “not so serious”.

Whilst Church claims the app would only eliminate certain diseases, I can’t help speculating whether with it on the market, children like myself would ever be born. I was born with Lebers congenital amaurosis, a rare inherited eye disease with an autosomal recessive pattern. My parents are both carriers of the gene, a fact that was totally unbeknownst to them when they met and then married in the late 1980’s. In 1991 they had a daughter, my older sister Eve, and three years later their second child was born. In the October of 1994 they found out that I was blind and that their genes were the cause of my blindness. The question of whether, if they’d known about this, they would have had children is one I think about, but rarely raise with them. I think it’s uncomfortable for us all, and to be fair to my parents they can’t possibly know what they’d have chosen to do in that situation.

In general, I support advances in medical science. Whilst I’m not interested in receiving a cure for my eye disease, I respect that other people are and I let organisations who are trying to find one do their work without either supporting or resisting them. Medical science helps us all, I reason, without it we wouldn’t be living as long as we are, and we’d still die of diseases like smallpox. But is eliminating the birth of disabled people the answer? Does it really make our society better?

There are plenty of well-meaning people who tell me that it does. Some disabilities are painful, result in extremely short lives and surely, they argue, we’d all be better off if people didn’t have to experience that. I don’t want to see other human beings suffer, I grew up with children who I knew wouldn’t reach adulthood, and the idea that they were going to die was awful and something I’d have done anything to change. As a disabled person I know that some of my friends won’t live the long life they deserve. But I can’t rationalise the creation of such an app by saying they never should have been born in the first place.

Perhaps I’m more cynical than I thought. Church has said that this app wouldn’t prevent children like myself from being born, but I suspect that in the end it might. Once it’s on the market the notion that couples are matched by their DNA would become normalised and the idea of filtering out matches that would lead to a disabled child less shocking. In the beginning, this is justified by removing matches that would lead to the child dying or suffering, but how long would it take before we started to look at people like myself who would by that point have the most severe genetic diseases and speculate that it might be best to prevent matches that would lead to this. It feels very “designer baby”, wrapped up in a pleasingly techy bow, the novelty of which attracts people to the idea.

Even if the app does reach the market, it won’t stop disabled people from being born. Whilst many disabilities have a genetic cause, a significant number of children are born each year with disabilities that were acquired in utero. An even greater number of people become disabled later in life and the severity of the disability they acquire depends on the cause. By filtering out dating matches based on a person’s DNA we don’t actually stop people from having to live with completely life-changing disabilities. But we do continue the stigma that surrounds disability, the notion that it’s wrong and should be prevented, the very thing that makes my life as a disabled person extremely difficult.

The scientists behind the app know all of this. They claim that they’re working for good, but I feel as though they are praying on people’s fear rather than doing anything that would make the world significantly better. I can understand why prospective parents might feel anxious when presented with the idea of having a disabled child. Most people know little to nothing about disability and so they can’t reasonably be expected to have a clue how they’d deal with it if it suddenly became a part of their lives. This is especially true if they’ve seen instances of discrimination, a child being refused equal access to school, or a disabled neighbour who isn’t receiving the personal care they require. Knowingly subjecting a child to live that way must seem terrifying, so an app that claims to take that worry away would have a certain appeal.

But it doesn’t stop disability from entering their lives. They may have a disabled child anyway, or perhaps the parents themselves would acquire a disability. And whilst we’ve been focussing on technological solutions that prevent the birth of disabled people, are minds are distracted from policies that would improve the lives of the very real disabled people who are living, and who will live in future. We become even less prepared to deal with disability as a society because our priorities are in the wrong place. Yet if these same scientists devoted their unquestionable talents to accessibility and solutions that enable disabled people to live full, comfortable lives, the idea of disability would be less scary, and an app like this suddenly less appealing.

The idea of paying, an app like this is unlikely to be free, to not have a disabled baby compounds the existing issue of disability and class and how they relate to one another. If you are wealthy the impact of having a disability is lessened. Due to government cuts, disabled people who require personal care often have to go without, or their families have to take on the responsibility. This means family members are unable to work, or the disabled person is unable to get out of the house because they don’t have the assistance they need. If the family is wealthy, they may not need to rely on government services, or they can supplement these, and so the family feels the effects of the disabilities less than they would otherwise. Do we really want to increase that divide?

We are fortunate enough to live in a world that is technologically advanced enough to be asking these questions. Instead of debating whose life has more value, why don’t we work to ensure that everyone, no matter what disability they are born with, is able to access all aspects of our society.