Experts today claimed that ‘Snake Oil’ genetic tests, which are marketed as generating ‘designer baby’ babies, do not work.
The US has begun to offer polygenic risk scores tests that can predict the genetic condition of embryos, such as type 1 diabetes and heart disease. And there are fears the technology could go on to be used to help pick out desirable traits, such as height and intelligence.
The tests cost around £1,000 for a single test and upwards of £3,000 for a full round of IVF.
However, a group of European experts have condemned this practice because it lacks clinical proof. They are calling for the ban until more research is conducted.
Because the test delays cell division for a few hours, embryo biopsies that are required to conduct the tests on embryos can cause damage. The panel cautioned that this could lead to couples having to go through another cycle of expensive IVF.
The polygenic risk test is different from the preimplantation genetic diagnosis, which (in the UK) is legal. PGD screens for 500 genetic diseases, such as cystic fibrosis.
But most illnesses associated with DNA quirks — like heart disease or type 1 diabetes — are caused by multiple genes, which can also affect other areas of the body in different ways.
Professor Markus Perola from the University of Helsinki described the tests in his genetics class as “unusable and unethical” and “unpractical”.
Aurea was born in May 2020, after she had undergone polygenic testing. Her parents were unable to select an embryo.
Experts claim that’snake oil genetic tests’ that are used to create designer babies don’t work and could cause embryo damage. Pictured: A preconception screening kit — which can give couples thinking of having a baby some idea of what their offspring’s predisposition to certain conditions and diseases might be — Orchid Biosciences, who also provide polygenic risk score tests
Professor Markus Perola (left), who is a University of Helsinki geneticist described the tests in a scathing manner. Dr Francesca Forzano (right), who is a physician at King’s College London warned potential IVF parents not to cross the Atlantic in order to take the tests.
IVF treatment in Britain has resulted in more than 390,000 births since 1991. US?
Although polygenic risk scores (or polygenic risk scores) aren’t currently offered on the NHS or in private clinics, they remain unclear as to their legal status.
The tests are currently offered by US companies, including Genomic Production in New Jersey and Orchid Biosciences in California.
While it’s not available on the NHS in Britain, it is technically legal for private practitioners. However, the Human Fertilization and Embryology Authority regulation is unable prevent these treatments from being provided.
Experts warn British IVF couples not to lure them across the Atlantic for expensive treatment.
The European Journal of Human Genetics published the warning.
If prospective parents are concerned about being duped they should know, Dr Francesca Forzano from King’s College London told a press conference that she was a doctor.
“We don’t have any control over what the individual can do.”
“There are many cases where couples travel from one country in Europe to practice IVF.
“This market is private, it differs from the NHS embedded activity. Therefore it is difficult to see what is going on in the community.
They also claimed the murky science behind the tests is particularly ineffective for couples from non-white backgrounds, because the studies behind the tests usually used data from European groups.
These scientists argued that the current lack of clinical research supports their tests in IVF selection.
Researchers currently employ polygenic risk scores for studying genetic diseases. However, no clinical research has been conducted to determine if it’s safe and effective in IVF settings.
President of the European Society of Human Genetics Professor Maurizio Genenuardi stated: “At this stage, [polygenic test scores]Cannot be used [in IVF screening].
‘The main problem is there are institutions that sell these tests to parents with the hope that this can be helpful to select better embryos — designer babies.
“But the information isn’t accurate.
“If couples are considered patients, then it’s not right to give these tests since they don’t have any benefit. It is making them pay money for nothing.
“If customers are treated as such, their hope of having better babies than them is false at best. There is absolutely no evidence to support this claim.”
Private clinics offer the testing to parents who are interested in having the procedure, even though there has been little research.
Experts warn that the testing can prove risky as it’s not always possible to determine if genes that are linked with certain diseases might actually be beneficial.
According to them, deliberately removing them can have negative consequences.
Also, the chances of being able to select for specific favourable characteristics — such as musical ability or beauty — are almost impossible, Professor Perola said.
He gave an example of how, in a hypothetical scenario, one out of every 16000 embryos would have to be able to show high intelligence, height, and other desirable traits.
To be successful in selecting embryos, the IVF procedure will ‘easily require’ tens or thousands of embryos.
In a typical round of IVF, eight to 14 eggs can be retrieved.
According to the Human Fertilisation and Embryology Authority, (HFEA), this has increased from 10% (689 cycles in 1991) to 21% (14.761 cycles in 2019) (stock photo).
Today, at a briefing, he stated that if you were to sell this type of product, you would be selling snake oil.
‘I’m not here to tell you polygenic risk scores do not work in research.
‘I’m here to tell you why they are practically impossible to use in genetic selection.
‘Polygenic selection tests are not currently usable, ethical and unpractical.
Dr Forzano also demanded that the HFEA be empowered to examine and end the private practice of medicine in Britain.
These infertility organizations echoed her call and condemned ‘neither scientifically or ethically valid’ companies providing these tests.
Sarah Norcross, director of Progress Educational Trust, said the charity supports the warning to parnets not to ‘waste their money’ on the tests.
She urged the HFEA clarifying the “legal and regulation status of such tests in the UK”.
Ms Norcross said: ‘The Advertising Standards Authority and the Competition and Markets Authority should keep a careful eye on whether and how such tests are marketed to UK patients.
It is not ethically or scientifically permissible for embryos to be selected using multiple risk scores.
She continued: ‘ Even if — for the sake of argument, and despite a complete lack of clinical evidence — a polygenic risk score could meaningfully predict certain things about certain embryos, the sheer number of embryos that would be needed to make use of this test could not be achieved in a clinical setting.
“There is a limited number of embryos that can be selected in fertility treatment settings. This means there are only a few viable options. Reasons for choosing one over the other must be supported with clear evidence.
“Preimplantation genetic screening for monogenic diseases is evidence-based. Preimplantation genetic screening using polygenic risks scores is not.”