Through their foundation, Allie LaForce and Joe Smith have so far helped families have 17 healthy babies.
The group works with would-be parents who have the fatal neurodegenerative condition Huntington’s disease in their families. If someone has the mutation that causes HD, a child has a 50% chance of inheriting it.
The foundation, HelpCureHD, helps couples pay for a type of screening that lets them have kids without the mutation. Called preimplantation genetic testing, or PGT, the process involves making embryos through IVF and peering into the embryos’ DNA, then selecting only those without the mutation for transfer into a womb.
“It wasn’t until we started going through this personally that we realized what a miracle it was, and how expensive it was,” said LaForce, a reporter for TNT Sports. Smith, a pitcher for the Minnesota Twins, has Huntington’s in his family, so the couple has been trying to have a baby with IVF and PGT themselves.
But LaForce said the foundation is now waiting to see if they’ll have to change their approach, at least in some states. If the Supreme Court, as seems likely, overturns the constitutional right to abortion established in Roe v. Wade, some states could impose abortion restrictions that could impinge on other aspects of reproductive medicine — including IVF and PGT.
The attention on the impending Roe decision has largely centered on its impact on abortion access. But experts say that ensuing state policies could affect everything from how miscarriages are managed to how certain birth control is provided — as well as IVF.
At issue is how the roughly two dozen states that are expected to ban or severely limit abortion will define when life begins, and if under those state laws, even lab-made embryos would have legal protections before they’re transferred into wombs. If they do, conducting IVF could become much more complicated in those states, and there would be unresolved questions about the thousands of IVF embryos that are currently sitting in freezers there.
The whole fertility field is watching, but there’s an extra layer of concern for people who combine IVF with PGT, which is used to help parents have children with the typical number of chromosomes or escape the genetic diseases that might have marked their families for generations.
Many aspiring parents who go through PGT do so because they face decent odds of creating embryos with genetic anomalies; the process helps them select which embryos to transfer and which not to. But if those embryos parents don’t want to transfer are considered people with legal rights, what can be done with them?
“We talk about it every day, we think about it, we speculate about what could happen,” said Kenan Omurtag, a reproductive endocrinologist at Washington University in St. Louis. “But we also recognize that right now it’s hard to know what’s going to happen.”
To Omurtag’s point, a lot remains to be determined. If the Supreme Court does overturn Roe, as a draft opinion first reported by Politico indicated it is leaning toward, states will then set their own policies, shaping what’s allowed and what’s not.
“The general concern is, will patients have the autonomy to choose what happens with their embryos?” said Emily Mounts, a genetic counselor. “We’ve never had to think about that before.”
If Roe is overturned, it will set off “trigger” laws in some states that ban abortion with few exceptions, and conservative lawmakers are weighing other restrictions. The crux of whether the policies will affect IVF and PGT is how states define the beginning of life: at fertilization, or only once an embryo implants in a womb. In Alabama, for example, its anti-abortion law applies only to a fertilized egg once it’s in a womb, exempting those made or preserved in IVF clinics. But experts said they were still trying to figure out if Oklahoma’s recently enacted abortion law — seen as the strictest in the nation — will extend to IVF embryos.
“There is such an important difference there,” said Stephanie Boys, an associate professor at Indiana University’s School of Social Work. “If they use the word implantation, they won’t really affect IVF or PGT. But it’s the states that are using the word fertilization, that’s where the issue is coming up.”
It’s not clear if lawmakers will deliberately try to target IVF, or if broadly written laws will inadvertently scoop up IVF embryos as well. Some laws could be ambiguous, meaning judges could weigh in with their interpretation.
“It’s going to have to be a process where we see what kind of laws get passed, see what the laws in existence are, and try to make some determination about what can happen with those,” Sean Tipton, the chief advocacy, policy, and development officer at the American Society for Reproductive Medicine, said during a recent Zoom meeting for those who work in the IVF field.
There are different kinds of PGT. One, called PGT-A, determines whether cells from the embryo have chromosomal abnormalities. There are debates about how broadly useful PGT-A is, but transferring embryos with atypical numbers of chromosomes can have a range of outcomes, from a failure to implant, to a miscarriage, to a child born with conditions like Down syndrome. While PGT-A has become a common add-on to IVF at some clinics, offered as a way to select the embryos most likely to implant, experts say it’s most useful for embryos made from eggs that come from older people.
PGT-M, which looks for specific disease-causing mutations or mutations that significantly increase the risk of a disease, is done when people know they have such mutations in their family lines.
Without IVF and PGT, Autumn Steen wouldn’t have considered children. Her family carries a mutation that causes a life-threatening kidney condition, one that she inherited. Steen, who was recently featured in a STAT article about the condition, said she wouldn’t have taken the risk that her children could inherit the mutation themselves. “There was no way I was going to do that,” said Steen, who lives in North Carolina.
But thanks to the technology, Steen has a daughter who is almost 2 and does not have the mutation.
She and her husband have another embryo made during the IVF process that’s still frozen. They haven’t decided what they want to do with it, but are wondering if the possibility they could lose the authority to make that decision means they should figure it out soon. North Carolina doesn’t have a trigger law, but it’s a state where a fight over abortion policies is anticipated should Roe be overturned.
“It feels like a pretty big decision to rush,” she said.
With IVF generally, if families have embryos they do not transfer — either because they do not want more children or because the embryo might not lead to a healthy child — they have four options. They can pay to continue storing the embryos, donate them for use by other people, donate them for scientific and research purposes, or discard them.
The latter option is one that could be threatened by laws that grant IVF embryos legal status, experts say.
“It’s not a small thing to say, you know, any embryo destruction is going to be potentially chargeable as a crime,” said I. Glenn Cohen, director of Harvard Law School’s Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics. “So I do think we’re going to have a lot of handwringing about this.”
Such laws could even apply to embryos with genetic anomalies that aren’t compatible with successful pregnancies or with life.
“Certainly, PGT involves discard for legitimate reasons, or at least judged legitimate by doctors and patients,” said Judith Daar, a professor of law at Northern Kentucky University.
Brooke Rossi, a reproductive endocrinologist in Ohio, said that laws granting legal protections to IVF embryos might not eliminate the practice in those states, but that they could make the process much less efficient, and more expensive. Perhaps clinicians would only fertilize one egg at a time, having to wait to see if it develops into an embryo fit to transfer to a womb, and then waiting to see if it implants successfully.
But she also saw the possibility that the scrutiny — and the threats of legal action or prosecution — might dissuade specialists from practicing in those states. In the past, failures with freezers have destroyed cryopreserved embryos. If an accident like that happened, could they be prosecuted?
“My worry is that people are going to say, it’s not worth it, it’s just not worth it to work under these uncertain circumstances,” Rossi said, a point echoed by other reproductive endocrinologists who spoke to STAT.
At HelpCureHD, LaForce said they’re weighing the possibility that the foundation would have to pay for families to travel out of state for their care if they lived in a place that enacted particularly restrictive laws. The added cost, however, might mean they can help fewer families.
When LaForce and Smith had their embryos tested for the HD mutation, they were not told if any had the mutation. Smith has opted not to get tested to see if he inherited it, so finding out that some of their embryos had the mutation would effectively be revealing his status to him.
Instead, their medical team told them simply that they had created embryos that were HD-free, including one that was transferred successfully about 16 weeks ago. LaForce is pregnant.
Megan Molteni contributed reporting.
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