Nov 01, 2024 07:00:00

Experts raise moral, ethical and medical questions as company launches genetic screening of fetuses

A joint investigation by anti-racism and fascism campaigner

HOPE not hate and British media outlet The Guardian has found that American biotechnology startup Heliospect Genomics is using methods that raise questions about the ethics of genetic enhancement.

US startup charging couples to 'screen embryos for IQ' | Genetics | The Guardian
https://www.theguardian.com/science/2024/oct/18/us-startup-charging-couples-to-screen-embryos-for-iq

An undercover video by HOPE not hate revealed that a biotech startup called Heliospect Genomics works with a dozen couples undergoing IVF. In the video, Heliospect Genomics sells its services to customers who want to test 100 fertilized eggs for up to $50,000, claiming to help them choose their future children based on genetically predicted IQs. Heliospect Genomics executives boast that their method can increase the IQ of children born by more than six points.

Heliospect Genomics advertised to customers an experimental genetic selection technique that described how to rank up to 100 embryos based on 'gender,' 'height,' 'risk of obesity,' 'risk of mental illness,' as well as 'IQ and other vulgar traits that everyone wants.'

Heliospect Genomics says its prediction tool is built on data provided by the UK Biobank , which holds genetic material donated by 500,000 British volunteers, but advertises that it only shares its data with projects in the 'public interest.'

Selecting embryos on the basis of predicted IQ is illegal under UK law, and in the US, where embryology is less regulated, it is legal but not commercially licensed to offer an IQ-based embryo screening service.

The Guardian, which conducted an investigation in collaboration with HOPE not hate, has asked Heliospect Genomics for comment, but the company's management has only explained that 'all of this is within the scope of applicable laws and regulations.' Heliospect Genomics claims to be in

stealth mode and is still in the process of developing the services it plans to offer. Heliospect Genomics also explained that it offers services for customers who want to test a small number of embryos for about $4,000 (about 610,000 yen), which is on par with its competitors.

Prominent geneticists and bioethicists have argued that Heliospect Genomics' service raises moral and medical questions. Duggan Wells, professor of reproductive genetics at the University of Oxford, asked, 'Is this too much testing? Do we really want this? It seems to me like this is a debate that the public hasn't had a chance to have enough of at the moment.'

'One of the biggest problems is that it normalizes the idea of genetic superiority or inferiority,' said Katie Hasson, deputy director of the Center for Genetics and Society (CGS) in California. 'These technologies reinforce the belief that inequality has biological, rather than social, causes.'

Heliospect Genomics' CEO is Michael Christensen, a former financial trader from Denmark. He argues that genetic selection promises a brighter future: 'Everybody will be able to have as many children as they want who are basically disease-free, intelligent, and healthy. That's a wonderful thing.'

The undercover HOPE not hate activists approached Heliospect Genomics posing as a couple living in the UK who wanted to start a family. Over multiple online meetings, Heliospect Genomics introduced them to its 'polygenic scoring' service. Heliospect Genomics explains that it does not offer IVF services, but that it uses algorithms to analyze genetic data provided by parents to predict the characteristics of individual embryos.

Heliospect Genomics offered a guided tour of its undisclosed test site, during which the presentation claimed that selecting the 'smartest' of 10 embryos would, on average, boost IQ by more than six points, although other traits like height or risk of obesity or acne could be prioritized depending on personal preference. But ultimately, the company claims that using lab-grown eggs will enable customers to create 1,000s or even 1 million embryos from which to handpick the best ones.

In addition, Heliospect Genomics explained that in the future, the genetic selection service will be expanded to personality types and

dark triad scores will be provided. Christensen said that depression and creativity scores could also be developed, but he said, 'Beauty is actually something a lot of people ask about,' suggesting that customers will be asking for not only IQ but also traits related to appearance.

Among the employees working at Heliospect Genomics is Jonathan Anomaly, a controversial scholar who has spoken out in support of ' neo-eugenics, ' the idea of creating children with desirable characteristics through embryo selection and genetic engineering. Mr. Anomaly has advised Heliospect Genomics on its media strategy and helped it acquire investors and clients based in the United States and Europe.

Heliospect Genomics received permission to access UK Biobank data in June 2023. In its application for access, Heliospect Genomics explained that it wants to use advanced technology to improve predictions of 'complex traits,' but has not disclosed any embryo screening because it intends for commercial use, and has not publicly stated that 'selection improves IQ.' In addition, Heliospect Genomics told The Guardian that it has no intention of accepting 'industrial-scale egg and embryo production' or 'selection of superior individuals,' and has no plans to offer services such as selecting embryos for dark triads or beauty.

In the UK, infertility treatments are tightly regulated, and only tests that can be performed on embryos are included in a list of serious health conditions approved by regulators. However, Heliospect Genomics suggests that if a couple living in the UK requests genetic data of a child that was accidentally generated during an approved embryo test, it may be legally possible to send it overseas for analysis. Heliospect Genomics also advises couples to travel to the US for IVF, and claims to be providing its services in accordance with regulations.

Indeed, Heliospect Genomics' Christensen told The Guardian that the company is not trying to circumvent UK regulations on embryo testing, just that UK Biobank does not require companies to disclose the exact commercial applications of their research. Moreover, he supports addressing concerns about pre-implantation embryo screening through public education, policy debate and properly informed discussion of the technology.

UK Biobank said Heliospect Genomics' use of its data was 'fully consistent with our terms of access', but Professor Hank Greeley, a bioethicist at Stanford University, said UK Biobank and the UK government should 'think hard about whether new regulations are necessary'.