A response to Dalton Conley’s piece on genetic screenings
By: Elizabeth Carr
Tags: Genetics, Ivf, Op Ed

In December of 1981, shortly after my birth as the first in-vitro baby in the United States, The Rev. Jerry Falwell, then head of the conservative Moral Majority, said that the scientists were “delving into an area that is far too sacred for human beings to be involved in.”

He was echoed by Rev. Father McCormick, overseeing the ethics of my birth. Here he is, discussing with the BBC the choices of my parents, and of the scientists who helped them:

To me, Dalton Conley’s recent piece in the Washington Post Perspective section feels like deja vu all over again.

Since my birth in 1981, IVF has become commonplace, with more than 8 million IVF babies born worldwide.

Conley’s cry for regulation is one I have heard before. While I agree with parts of his argument, it is the argument of someone who hasn’t witnessed first-hand how thoughtful discussion from within the IVF field led to the regulation and best practices of IVF all those years ago.

I was in the room when the top IVF pioneers and clinics discussed their concerns around the risk of multiple births, or what a clinician should do when faced with a patient who wanted a half dozen embryos implanted, even though doing so would put the patient themselves at great risk.

A pattern I’ve seen many times over my life is one of outsiders, commenting from a comfortable distance, often with no investment, making thoughtless statements which are insensitive to the needs of the patients, and to the work done by the scientists who devote their lives to serving those patients. People who want to dehumanize and make suspect parents and scientists making “Test Tube Babies” and “Designer Children”.

The IVF and genomics fields work tirelessly, in collaboration with their patients, to address the very concerns Conley raises. To imply otherwise is offensive.

Conley says: “Currently, PGSs predict the health outcomes of Americans with African ancestry less well than they do for Americans of exclusively European descent. There are important scientific reasons for this difference, including different levels of genetic variation in the populations, but political ones as well: There are simply fewer studies with large numbers of Black subjects on which to train statistical models to calculate PGSs.”

The industry and scientists recognized this, and as such, researchers at the NIH developed guidelines for how polygenic risk scores should be reported.

And, as recently as this week, the NIH said that it will provide $38 million in grant funding over the next five years to fund a consortium that will develop improved methods for using polygenic risk scores to predict disease in diverse populations.

Additionally, Conley touts the near 100 percent success rate of genetic tests for single-gene diseases (PGT-M), I’d like to remind him that that particular test has also been around since 1990, when Alan Handyside and Professor Lord Robert Winston at Hammersmith Hospital, London achieved the first pregnancies worldwide following in vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD) of inherited disease, now known as PGT-M.

And I remind him that one of the first criticisms leveled against PGT-M was that it was “noisy”! BRCA predisposes women to breast cancer. Embryo genetic screening against BRCA is now widely accepted, even though these “noisy” genes will only result in breast cancer in a fraction of the daughters born with it, less than half. Yet, despite this “noise”, we as a society have come to accept that the decision of whether to screen BRCA, whether to reduce risk of breast cancer, is best deliberated by the parents and the scientists with a direct stake. Screening polygenic risk scores can reduce risk just as much risk as BRCA, and is applicable to far more people:

These matters are being debated on lowly twitter, in the highest bioethics journals, and in IVF clinics everywhere. It’s too early to say where we will arrive as a society, but it’s a far cry to say that these matters aren’t being deliberated carefully by the best minds in the IVF science community.

As with most things, PGT-M has only gotten better with time, patients, and scientists on its side. Meanwhile, the Falwells and McCormicks have lost interest, after their designer-baby rhetoric stopped garnering attention. I see this pattern repeating itself with PGT-P.