The Ghettoization of Genetic Disease

gizmodo |  Today in America, if you are poor, you are also more likely to suffer from poor health. Low socioeconomic status—and the lack of access to healthcare that often accompanies it—has been tied to mental illness, obesity, heart disease and diabetes, to name just a few. 

Imagine now, that in the future, being poor also meant you were more likely than others to suffer from major genetic disorders like cystic fibrosis, Tay–Sachs disease, and muscular dystrophy. That is a future, some experts fear, that may not be all that far off.

Most genetic diseases are non-discriminating, blind to either race or class. But for some parents, prenatal genetic testing has turned what was once fate into choice. There are tests that can screen for hundreds of disorders, including rare ones like Huntington’s disease and 1p36 deletion syndrome. Should a prenatal diagnosis bring news of a genetic disease, parents can either arm themselves with information on how best to prepare, or make the difficult decision to terminate the pregnancy. That is, if they can pay for it. Without insurance, the costs of a single prenatal test can range from a few hundred dollars up to $2,000. 

And genome editing, should laws ever be changed to allow for legally editing a human embryo in the United States, could also be a far-out future factor. It’s difficult to imagine how much genetically engineering an embryo might cost, but it’s a safe bet that it won’t be cheap.

“Reproductive technology is technology that belongs to certain classes,” Laura Hercher, a genetic counselor and professor at Sarah Lawrence College, told Gizmodo. “Restricting access to prenatal testing threatens to turn existing inequalities in our society into something biological and permanent.”

Hercher raised this point earlier this month in pages of Genome magazine, in a piece provocatively titled, “The Ghettoization of Genetic Disease.” Within the genetics community, it caused quite a stir. It wasn’t that no one had ever considered the idea. But for a community of geneticists and genetic counsellors focused on how to help curb the impact of devastating diseases, it was a difficult thing to see articulated in writing.

Prenatal testing is a miraculous technology that has drastically altered the course of a woman’s pregnancy since it was first developed in the 1960s. The more recent advent of noninvasive prenatal tests made the procedure even less risky and more widely available. Today, most women are offered screenings for diseases like Down syndrome that result from an abnormal presence of chromosomes, and targeted testing of the parents can hunt for inherited disease traits like Huntington’s at risk of being passed on to a child, as well. 

But there is a dark side to this miracle of modern medicine, which is that choice is exclusive to those who can afford and access it.