Fertility agencies offering embryo selection for IVF and surrogacy have been accused of promoting eugenics and misleading consumers about the power of genetic screening.
Some American clinics claim they can “rank” embryos for IVF using Preimplantation Genetic Testing for Polygenic risk (PGT-P), a genetic screening system which is illegal in the UK. They claim this process can detect the likelihood of an embryo later developing conditions such as schizophrenia and breast cancer.
An analysis published in Nature, the medical journal, found that this new method, used by the clinics to sell fertility services, “is not sufficiently effective or robust for embryo selection”. The study also warned that PGT-P “may be used eugenically to sort out the value of embryos along with any desirable traits for consumers”.
PGT-P testing can cost anywhere between $2,000 and $6,000, on top of the price of IVF and associated costs, which can already run into the tens of thousands. The global fertility business is estimated to be worth more than $34 billion, and is set to almost double in value over the next decade. The industry is unregulated in many countries, opening the door to clinics offering testing services at great expense, backed by flimsy scientific evidence. Using slick marketing materials, they imply that parents can select the perfect child.
One clinic, The Virginia Centre for Reproductive Medicine, claims it can test embryos for conditions as wide ranging as schizophrenia, coronary heart disease and various types of cancer. They even profess to be able to judge if the child born from the embryo will be more likely to have a heart attack in adulthood.
“All of the disease risks for each embryo are merged into a single number: the Embryo Health Score (EHS). The embryos are then ranked (lowest to highest risk), using this single EHS number,” the centre’s website says. Using this number, embryos “are prioritised in a clear order.” The website asserts that PGT-P testing can reduce the incidence of diseases by over 70 per cent.
Experts suggest such claims are hard to justify. PGT-P and Polygenic Risk Score (PRS) is an active area of research, and may hold future promise in assisting diagnosis and treatment decisions for patients. However, while it is yet to be proven, it has been seized upon and heavily marketed by IVF providers, according to a group of researchers from elite Japanese universities.
The Japanese academics go on to say that PGT-P has multiple issues. First, the supposed health advantages of selected embryos can be “too small to be validated or have clinical meaning”. Additionally, the researchers found that the same embryo can receive a high or low score, depending on methodology used to judge test results. In other words, hypothetically, one clinic could say an embryo is a perfect choice for IVF, while another could say the same embryo should be discarded.
Judging traits in a ‘eugenicist’ manner
The researchers’ views are echoed by the Human Fertilisation and Embryology Authority, the UK regulator of IVF treatment. The regulator states that PGT-P “does not meet the criteria for genetic testing and is currently not backed by evidence from scientific studies”.
Explaining why its use is banned in the UK, it says risk scores can be “interpreted too rigidly”, and that maintaining a healthy lifestyle is “likely to have a bigger impact on preventing disease”. Importantly for couples seeking fertility treatment, use of PGT-P may actually reduce chances of having a baby, as viable embryos could be discarded, according to the regulator.
“These scores don’t tell you anything concrete or reliable about the presence or absence of a specific gene variant,” says Sarah Norcross, director of the Progress Educational Trust (PET), a charity for people affected by infertility and genetic conditions. “The resulting data just doesn’t give you the kind of certainty that you need [to] meaningfully select embryos.”
As embryos used for IVF typically share the same parents, “genomes of the embryos are unlikely to differ substantially enough” for tests to provide much information, she adds. “These are just some of the reasons why PET – along with many other organisations […] – thinks it is wrong to offer PGT-P to patients.”
Technical shortcomings are only one side of the issue. Besides the risk of arbitrarily discarding perfectly viable embryos, scientists fear this method could be used to judge traits in a “eugenicist” manner.
Some clients of the international surrogacy and IVF market have already attempted to source sperm and eggs for “tall, blond” children, as reported in The Telegraph in August. The idea of PGT-P being used to similar ends does not seem to be far-fetched.
Researchers also worry about the impact this testing could have on parent-child relationships. How might parents view a child born from a low-scoring embryo? How would a child feel knowing they were chosen out of set, based on a numerical value? These situations require careful consideration.
The PGT-P method is the newest among a variety of tests available for potential health defects in embryos, such as the more widely available PGT-A, which is used to determine whether embryos have the right number of chromosomes. An embryo with the incorrect number of chromosomes may fail to implant, result in miscarriage, or lead to a child with chromosomal disorders such as Down’s Syndrome.
While evidence as to the efficacy of PGT-A is mixed, studies suggest it can improve live birth rates in some age groups. PGT-P differs in that it analyses genes in greater detail, judging of risks of polygenic disorders; that is, medical problems associated with genetic variants across multiple genes. Clinics offering the test point to studies supporting its potential, and present a universally positive view of this technology. The wider medical and scientific community is, however, more sceptical.
Ultimately, PGT-P has been used only since 2019, making it impossible to draw conclusions about the long-term health outcomes of anyone who has been born after undergoing this testing. It is a scientifically controversial process, and questions over technical shortcomings and ethical issues have yet to be conclusively answered. Despite this, clinics continue to charge patients undergoing IVF thousands for genetic testing, regardless of voices urging caution.
The Virginia Centre for Reproductive Medicine was contacted for comment.
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