News13th September 2024

New report says the NHS should not widely roll-out AI-powered genomic health prediction technology yet

The Nuffield Council on Bioethics (NCOB), working in partnership with the Ada Lovelace Institute has published a report warning of the risks to population health and people’s privacy if the NHS was to roll out AI-powered genomic health prediction (AIGHP) technology too soon.

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AIGHP refers to a set of AI-driven techniques that utilise a form of genomic analysis known as polygenic scoring. Essentially, they assess multiple genetic variations in someone’s DNA to calculate whether they are more likely to develop a particular disease, as compared with the rest of the population. The technology can be used to provide people with a greater awareness of their disease risk and how they’d likely respond to treatment options. It can also be used at a collective level to report on variations in disease risk across the population, with this information then underpinning decisions on screening and resource allocation.

The UK Government has published strategies that cite the potential of AIGHP to transform our nations’ healthcare system by offering a more preventative and personalised approach. However, in this new report, we are calling for caution. We say that if we were to widely adopt AIGHP across the NHS at a population level now, the potential harms caused by technology would outweigh the potential benefits.

Today’s report from NCOB and the Ada Lovelace Institute warns that adopting AIGHP at scale could exacerbate genetic discrimination, where a person or group is treated differently because they have genetic variations thought to be associated with a particular illness. It also highlights the large unknowns when it comes to how the public would want or expect to manage consent procedures and data governance. And it emphasises the need for us to agree what desirable contractual terms and data ownership should look like before we enter into the private sector relationships we would need to provide the considerable amounts of computational and AI expertise that AIGHP demands.

While it makes sense for us to look to technology as a way to help our NHS provide the best kinds of interventions at the best time to help people get healthy, we must ensure that we are not rushing ahead before a full assessment of the benefits and harms has been made.

AI-powered genomic health prediction has the potential to offer us a lot, but this report clearly highlights that we are not ready to fully embrace it, and nor is it ready to deliver on its promises. We must also take a step back and engage the public fully so that we can ensure the use of AIGHP in our NHS is not only wanted, but also trusted. Only by embedding ethical considerations from the outset, will AIGHP reach its full potential.

Sarah Cunningham-Burley, Chair of the Nuffield Council on Bioethics

The report contains 10 recommendations, developed to help overcome these challenges. They are aimed at the policymakers who would decide upon the parameters of AIGHP use and oversee its rollout, were it to happen.

One of these recommendations calls upon the Department for Health and Social Care, the General Medical Council and other relevant organisations to work together to create a model of consent that would be used by patients sharing their genomic data for research or clinical purposes. We say that this model should then be the subject of a deliberative public engagement exercise.

We are also encouraging the Government, the Equalities and Human Rights Commission, relevant sector regulators, and civil society to run a citizens’ assembly to explore whether there is a need for new primary legislation designed to address genomic discrimination, both in healthcare and in other domains such as employment and education.

Genomic health prediction could well be beneficial, but its use within the NHS will need to be approached with caution. Our research suggests that current regulations urgently need to be strengthened to address substantial concerns around privacy and discrimination presented by the technology – and to build public trust.

Rather than seeing it as a tool for mass disease prevention, policymakers should focus on enabling targeted deployments of genomic health prediction, within a stronger regulatory framework.

Harry Farmer, Senior Researcher at the Ada Lovelace Institute

This new report, builds upon insights gathered in the early findings DNA.I report, which highlighted the pressing ethical, legal and social questions surrounding the convergence of AI and genomics.