Couples passing ECO The UK is using an apparent loophole in the law to rank its embryos based on genetic predictions of IQ, height and health, the Guardian has learned.
The controversial screening technique, which evaluates embryos based on their DNA, is not allowed in UK fertility clinics and critics have raised scientific and ethical objections, saying the method is unproven. But under data protection laws, patients can—and in some cases have done so—request the raw genetic data of their embryos and send it abroad for analysis in order to give birth to smarter, healthier children.
Dr Christina Hickman, senior embryologist and founder of Avenues Fertility Clinic in London, said rapid advances in embryo screening techniques and the recent launch of several US companies offering so-called polygenic screening had left clinics facing “legal and ethical confusion”.
“This opens up a whole can of worms,” said Hickman, who raised the issue in a letter last month to the Human Fertilization and Embryology Authority (HFEA).
One US company, Herasight, which charges couples $50,000 (£37,000) to evaluate an unlimited number of embryos, confirmed it had already worked with couples undergoing IVF in UK clinics. There is no suggestion that Herasight is breaking any rules.
Avenues currently has two patients who – without the clinic's involvement – intend to use Herasight's services. One of them, a 29-year-old woman, said she and her husband hoped to reduce the risk of diseases such as diabetes and select embryos with a high predicted IQ.
“People are willing to spend a lot of money and heartache to give their children a slightly better life after they are born,” said the patient, who wished to remain anonymous. “It seems to be the best bang for your buck, costing less per year than private school.”
Herasight claims to provide an average IQ gain of six points for a couple with five embryos and provides information on sex, predicted height and risk indicators for diseases including heart disease, common cancers, Alzheimer's disease and schizophrenia. A patient who had 16 embryos said, “I'm hoping I'll have six, and I'm thinking, 'Wow, that's a great profile.'”
In the UK, tests carried out on embryos are legally limited to a list of serious diseases such as Huntington's disease, sickle cell disease or cystic fibrosis. Clinics cannot perform polygenic screening to select embryos. The HFEA also states that a clinician should not tell a patient which embryo to use based on that patient's knowledge of the patient's score.
Peter Thompson, chief executive of the HFEA, said polygenic testing was illegal for use in the UK. “Licensed clinics in the UK are responsible for selecting embryos based on what is permitted under the HFE Act and should therefore not offer such testing and subsequent treatment,” he said.
“However, there is nothing to stop a UK couple wishing to undertake such testing and even treatment abroad, but a UK licensed clinic should not then make a decision about which embryo should be placed back using that information.”
Some have questioned whether the HFEA's position is feasible. Hickman said the clinic usually does not block a couple's request to transfer a specific embryo, as long as it does not conflict with medical safety.
“If a patient wants to transfer embryo number one and the clinic says, no, we need embryo number three, I can't think that if this went to a judge he would say no, you'll have to transfer embryo number three,” she said.
“I'd rather have [polygenic testing] is allowed here and the HFEA will monitor how this is done ethically.”
Herasight built its algorithms using large genetic databases, including the UK Biobank, and published scientific basis for his predictions. However, the use of polygenic indicators in the context of embryo selection remains controversial, and the European Society of Genetics has condemned this method as “unproven and unethical”.
There are also broader ethical concerns, including the possibility of creating a stratified society in which wealthier people pay to choose the embryos they prefer, and the prospect of normalizing the belief that some people are genetically superior to others.
Professor Angus Clarke, a clinical geneticist at Cardiff University, said: “These companies are doing dark science in an emotionally charged context.” He said some parents may find it difficult to resist the promise of choosing “the best child, not just any old child.”
“Let's hope they are not disappointed,” he added. “If you’re that kind of kid, it might be hard to live up to those expectations.”
In a statement, Herasight said: “We can confirm that Herasight works with parents around the world, including families undergoing IVF in the UK, by converting conventional PGT-A data that parents have legally obtained and provided to us. This data may be accessed by clients in accordance with applicable data protection laws in the UK, Europe and the rest of the world.”
Herasight said it does not partner with IVF clinics and does not provide them with data or influence them in the selection of embryos.
