BOKARO STEEL CITY, Jharkhand—What do you hope for when you log into a dating app? Chemistry, good looks, educational qualification, maybe family background? Sanaya (name changed) was lucky enough to meet her partner through a dating app and even better, both their families were on board for the wedding.
But the couple’s first child was born with a genetic disorder that, doctors said, would prevent his mental development as he grew past infancy. Sanaya told HuffPost India she wished she was aware of this risk before going through this heartbreak with her husband.
People like Sanaya may have their wish granted if one Harvard geneticist succeeds in his plans. Earlier this month, Harvard professor George Church, who specialises in gene editing research, said on a TV show, that he is trying to ensure no child is born with genetic disorders. How will this happen? Through developing a dating app that would match people through DNA—meaning two people who share the same gene will not be matched with each other.
The dating app, named digiD8, has been co-founded by Church, and engineer Barghavi Govindarajan who spoke to HuffPost India about their app, and its vision. Asked how this app does not promote eugenics, Govindarajan said she was in accord Church’s statement to the media: ‘‘There are a lot of diseases which are not so serious which may be beneficial to society in providing, for example, brain diversity. We wouldn’t want to lose that. But if [a baby] has some very serious genetic disease that causes a lot of pain and suffering, costs millions of dollars to treat and they still die young, that’s what we’re trying to deal with.’’
While this sounds like a reasonable way to ensure that babies and their parents are safe from the risk of genetic disorders such as down syndrome, cystic fibrosis or sickle cell anaemia, the proposal has also received criticism from people who say that it is a way of promoting eugenics—a philosophy that advocates that it’s possible to improve the quality of the human species through selective breeding. The eugenics movement, which began in the US in the late 19th century, was infamously advocated by Hitler and the Nazis, to create a Germanic ”Übermensch”.
The movement lost its credibility after the Second World War, and it is now widely accepted that variations in genes give rise to diversity in a culture, which is essential for its flourishing generation after generation. Critics have called out digiD8 for bringing back these issues—for example, Janus Rose argued in Vice that although Church and Govindarajan may not mean to use it in such a way, others could use the technology to identify people with a theoretical gene for gender dysphoria, eliminating trans people or people with other kinds of disabilities.
“It’s not the technology itself that’s problematic. It’s how we use it,” Vardit Ravitsky, a bioethicist at the Université de Montréal, wrote on a Medium blog. “So I guess this means wiping me out along with millions of other disabled people. Ever considered that having a disease doesn’t mean a life that’s tragic or full of suffering?”
Alice Wong, the founder of the Disability Visibility Project, tweeted, calling it ableism and eugenics.
From the time Church revealed the concept behind digiD8, many people have been horrified by the notion. On 60 Minutes, he claimed it could be a cheap way to eradicate thousands of diseases that cost “about a trillion dollars a year, worldwide”, although he didn’t give specific data about the source of this figure.
A since-removed job listing on the digiD8 website also claimed the company is pursuing an “untapped” market by creating a dating service that uses science to evaluate “lineal compatibility”, an apparent reference to caste and tribe group self-segregation practices that occur in the Gulf region and in India, the MIT Technology Review reported.
In today’s world, where we have a clearer understanding of how genes work, is there any justification for the idea of matching people based on their genomes? And if so, is a dating app the right way to actually make it happen? And lastly, who will be responsible for the security of the humongous amounts of sensitive data generated?
What causes genetic disorders?
Most people carry a mutant gene—a gene whose structure is different from that found normally—which they pass on to their offspring. A single mutant gene may or may not cause sickness, depending on how dominant it is. But if a person has two copies of the same recessive mutant gene, that causes sickness.
Children inherit genes from both the parents. If both their parents have the same mutant gene, they have a 25% probability of being born with the disease caused by that recessive mutant gene.
Church argues that if everyone chose partners based on their genome sequence, about 7,000 diseases could be eliminated forever, and removing the 5% of the world’s population that would have been born with rare diseases, if the DNA matching wasn’t done.
Of course, for this, everyone would need to get their genome sequenced.
According to Church, matching people by their genes will prevent the birth of children with debilitating genetic disorders—so factors such as race, or even what the genes carry won’t matter at all; the app is only concerned with matching genes that don’t carry markers for disorders.
DNA matching could take away your choices
Dr. Nimmi Rangaswamy, Associate Professor at IIIT Hyderabad, who researches on the Sociology of Digital Media, and has worked in the development of technologies for consumer-centric heath care, at Xerox, and done ethnographic field research on technology use in developing countries for Microsoft Research, thinks parents “should have a say in whether they want such a child or not. Technocracy cannot determine what is right for them. There have been known cases where parents have gone ahead with the second child despite the first child being born with inherited genetic disorder, people shouldn’t be controlled by technology.”
At the same time, Rangaswamy, who is also supervising research on dating app experiences, thinks a dating app shouldn’t be the way to go about this. “It seems almost as if Bhargavi and Church are proposing to use a dating app because it grabs [the] attention.”
These apps are used by individuals to meet new people, have fun and explore the possibility of developing relationships, she said.
“Marriage and making babies is the last thing on the mind of those using dating apps. They are there just to expand their social circle beyond the existing one. And in case of restrictive societies like India, explore their sexuality too. If marriage happens, that’s a bonus.”
At the same time—if one can predict the probability of their occurrence, it would give a fair chance to parents or to-be-parents to make an informed decision.
Church told HuffPost India that, “people choosing digiD8 would just need to spit, send and sit back. The app will throw up matches after screening out candidates based on their genome matching, in addition to the usual dating app criteria. The genome sequencing would be kept confidential, even from the person themselves.”
But that sounds counter-intuitive. Genome data is critical information that should belong to the person whose DNA is being used.
Pre-nuptial or IVF genetic counselling is not entirely unheard of—there are many ethnicities globally that carry more than their fair share of genetic variants and kids born in such societies are more likely to have inherited genetic disorders than anywhere else in the world. Organisations such as Dor Yeshorim have been able to eradicate rare diseases like Tay Sachs among Jewish communities through pre-nuptial genetic counselling.
Whose DNA is it anyway?
As experience has shown time and again, once any data is lodged within an app or its server, its privacy and security are questionable. The privacy of genotype data and how it is handled must be considered carefully before any such data is collected. This may be even more important in countries where data privacy laws are not very robust, like India.
Doctors, however, caution against dismissing Church’s suggestions completely. Dr. Apeksha Pathak, a pediatrician, says, “It is a good idea to match genotype genes to predict inherited diseases in offspring. There are certain inherited diseases which are quite common, like thalassemia. But there are some that are rare, but life-threatening and expensive to manage.”