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.
Artwork via Angelica Alzona/Gizmodo
Imagine now, that in the future, being poor also meant you were more likely than others to suffer from major genetic disorders such as 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 such as 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 $US2000 ($2500).
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 counsellor 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 such as 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.
“This is one of those aspects of prenatal testing that we don’t want to talk about,” Megan Allyse, who studies reproductive ethics at the Mayo Clinic, told Gizmodo. “There’s a wide variety of reasons people might not get access to reproductive technologies. But what is unavoidable is that you are more likely to have access if you are socio-economically well-off.”
The scenario Hercher imagines is this: Say you don’t have insurance, or have insurance that does not cover the roster of prenatal tests that OB/GYN’s commonly recommend. You also cannot afford the tests out-of-pocket, and your baby is born with a genetic disease. This scenario plays out over and over again among people who cannot afford testing, while at the same time many of those who can afford the test for that disease and test positive choose to terminate a pregnancy. Over time, Hercher predicts, that disease would become more prevalent in those communities that could not afford the tests.
Whether this hypothetical scenario will play out in the real world isn’t totally clear, in part because there are many variables besides socioeconomic status at work. Maybe you live in a state where abortions are more difficult to access or against local norms, influencing your decision to undergo prenatal testing. Perhaps you oppose abortion for cultural or religious reasons. And there isn’t data for on individuals who refuse prenatal testing altogether, even if they could afford it. Somewhere around 70 per cent of women in the US opt-in to some form of prenatal testing, but those numbers vary wildly by region, jumping up to about 90 per cent on the coasts and dropping significantly in the US Midwest.
At this point, all researchers can really do is speculate about future disparities in genetic disease. For example, a 2012 meta-analysis published in Prenatal Diagnosis found that across the US, the mean termination rate for Down syndrome was 67 per cent, meaning that a significant number of people who undergo prenatal testing and wind up testing positive for Down syndrome choose to end the pregnancy. Of course, not every parent who learns their future child will have Down syndrome wants to terminate the pregnancy. It’s is a complex, personal choice. But access to prenatal testing also allows a parent to better plan for their child’s future needs.
Some geneticists already see evidence of an accessibility gap in their own clinical practices.
“Certainly we know that access to care varies,” Massachusetts General medical geneticist Brian Skotko told Gizmodo. His own work has studied the demographic breakdown of Down syndrome, and has found a clear racial pattern in both Down syndrome births and pregnancy terminations.
“In Massachusetts, we’re seeing more Hispanic and black mothers with Down syndrome babies,” he said, “and what we’ve learned from their stories is either they don’t have access to testing or that if they did get tested, they had strong religious beliefs.”
As access to prenatal testing increases, Skotko said, it is likely we will see a drastic reduction in genetic diseases. In the next five years, as tests get better and better, the global market for them is expected to balloon by 25 per cent to over $US10 billion ($13 billion). “We can look to historical evidence,” Skotko said. “As more people get access to prenatal tests, there will be an increase in number of selective terminations.”
Access to prenatal testing isn’t the only thing that could lead to Hercher’s fear becoming a reality, either. Abortion access has become increasingly difficult in some parts of the US, with states like Texas stripping funding for clinics and placing more restrictions on the conditions under which they can take place. In vitro fertilisation could one day also contribute, allowing those who can afford the tens of thousands of dollars to undergo IVF to select the most genetically-desirable eggs for implantation.
In her new book, Whittier Law School professor Judith Daar makes a terrifying prediction: That unequal access to IVF may wind up bringing about a “new eugenics”.
“The growth and success of reproductive technologies, accounting for three out of every one hundred babies born in the United States today, have prompted lawmakers to introduce and occasionally pass legislation that expressly or indirectly limits access to [assisted reproductive technologies] by certain individuals,” she writes. “These formal legal barriers, combined with individual and practice-wide physician conduct, coalesce to suppress access to assisted conception for those who have historically experienced a devaluation of their reproductive worth.”
Daar points out that while in the 1942 case Skinner v. Oklahoma, the US Supreme Court affirmed that procreation is a right, striking down the state’s compulsory sterilisation of certain criminals, the ruling only weighs in on procreating naturally. The court has yet to rule on anything that might also equalise access to technologies that could help with conception, or to ensure that a child conceived is healthy.
“What’s missing in the conversation is how we adopt all of these technologies to a society that considers well-being for all,” Eleonore Pauwels, a bioethicist at the Wilson Center, told Gizmodo. “There is already an access problem. But what about when we’re editing out diseases? Who will pay for CRISPR? We are looking at much more disruption in the future.”
The only real way to prevent genetic diseases from becoming diseases of poverty, said Josephine Johnston, a bioethicist at The Hastings Institute, is to make sure everyone has access to the same services. While the costs of today’s tests may one day be affordable for more people, there will inevitably also be newer, more expensive technologies that create the same issues in the future. Thus is the cycle of healthcare’s disparity of access — there are always people for whom treatment is not equal to the rest.
“People have to have access to healthcare services, and [genetic testing] needs to be part of what those services include,” she told Gizmodo. “If you don’t have access to testing and termination services — or support if you continue the pregnancy — you don’t really have a choice about what to do. It’s not a choice if you’re backed into a corner.”
The inequality threat that prenatal testing, IVF and germline editing present, is of course a version of the same inequality that has always existed. If you are poor, there is a good chance your access to healthcare is not as good as someone who has more money.
But as these technologies grow in power and expense, the gulf of that inequality widens. “Genetic disease has always been our shared vulnerability,” Hercher wrote in Genome. “When one part of society can opt out of risk, will they continue to feel the same obligation to provide support and resources to those who remain vulnerable, especially if at least some of them have deliberately chosen to accept the risk?”
Hercher presents what is really a common vision of dystopia: A future of genetic haves and have-nots in which inequality becomes encoded in our basic biology. But arriving at that future does not require genetic engineering or some other as-yet-unknown technology. All it requires is that we keep doing what we are already doing, living in a world in which access to necessary healthcare is often a luxury off-limits to the poor.