Nigeria has the highest global concentration of sickle cell disease in its population. Harper’s contributor Krithika Varagur joins host Krys Boyd to discuss Nigeria’s approach to “genetic responsibility,” and what couples are up against when they meet a mate whose genes when combined with their own could produce a child with the painful disease. Her article is “Love in the Time of Sickle Cell Disease.”
In the future, will we all have our genes tested?
By Aislyn Gaddis, Think Intern
In Nigeria, genetic testing is common, sometimes, it’s even required.
Sickle cell disease affects around 25 percent of Nigeria’s population, and even more people are carriers of the gene.
Genetic testing for sickle cell is heavily encouraged before getting married and having children to prevent more people being born with the disease, and, according to guest Krithika Varagur, most churches in Nigeria require it before they will marry a couple.
This may seem strange – and even invasive — but genetic testing may soon be the norm for the rest of the world, too. Varagur lives in New York and says that testing for carrier genes before you have children is already extremely common among parents there.
“They all told me that testing has become a completely standard part of prenatal care,” Varagur said. “It’s recommended to women looking to conceive and parents looking to have children almost in the exact same breath as prenatal vitamins.”
She said a lot of potential parents told her they felt overwhelmed by the amount of information the test gave them.
“These tests can find your carrier status for hundreds of diseases, which is just far more knowledge about our genes than we’ve ever had at any point in humanity,” Varagur said.
Finding out you are a carrier of a disease can also create a lot of anxiety.
“In a lot of cases, being a carrier doesn’t mean your child will necessarily have this disease, but it just creates an extremely stressful situation for people who are looking to become parents,” she said.
Genetic testing of fetuses has also become more common in the last few decades.
“Starting in the 70s, people in countries, including America, have chosen to get abortions when they learn that they’re carrying a fetus with Down’s syndrome,” she said. “In America, it’s a little bit more of a mixed bag, because we’re kind of unusually polarized when it comes to abortion. But in a lot of Western European countries, there has been such a consensus around this that just two or three babies every year are born with Down’s syndrome.”
Varagur says choices parents are making based on this genetic knowledge may lead to unintended effects in the future.
“Society might become much less accommodating to people with this kind of disease if it almost vanishes,” she said.
As technology advances, Varagur predicts genetic testing will become more – which could also lead to expectations for parents to “screen and intervene.”
“I can easily foresee a world in which it’ll be considered irresponsible not to screen. The worst-case scenario I can see is if we turn this rise of testing – which is obviously an amazing scientific breakthrough in many ways – into an opportunity for a blame game,” Varagur said.
On one side, there’s children being born with diseases that could’ve been prevented. On the other, there is intense pressure on parents and a possibility of crossing into eugenics.
Ultimately, Varagur said parents must accept that certain things are going to be out of their control, whether it’s their child’s career or their health.
“You can never control all the genetic variables. At least as of now, we don’t even know how some of these genes work. They’re so new on our radar,” she said.
To hear more about how the sickle cell gene affects marriage in Nigeria and about the future of genetic testing, listen to the episode above.
