Reported by Kate McNeil, CSaP Communications Coordinator
In the final episode of CSaP: The Science & Policy Podcast’s mini series on genetic technologies, host Dr Rob Doubleday and expert guests explored questions surrounding genetic technologies and human health. Throughout the episode, Dr Doubleday was joined by Dr Jonathan Roberts - who is currently a researcher in the Society and Ethics Research Group at the Wellcome Campus and a NHS Genetic Counsellor at Addenbrooke’s Hospital; the PHG Foundation's Alison Hall; and University of Cambridge sociologist Professor Sarah Franklin.
What is the current state of regulation and use of genetic technologies in human healthcare in the UK?
There are a whole host of different technologies that are being used within healthcare and medical research. According to Alison Hall there is a big drive within government to widen the use of whole genome sequencing, which is able to look in detail at individual genomes and use that information to generate faster diagnoses and more targeted treatments. There are also other technologies, such as gene editing technologies, where there are sharper divisions, different regulatory environments, and different sets of ethical issues. Here, multiple experts highlighted the different challenges and questions posed by somatic and germline editing, while citing a 2018 Nuffield Council on Bioethics report which outlined the factors which would need to be met, including the need for a broad and inclusive societal debate and robust governance, before germline gene editing was contemplated.
With respect specifically to the somatic uses of technologies like CRISPR genome editing, the regulatory situation post-Brexit has become unclear, with a Medicines and Medicines Devices Act which has recently been passed having created a mechanism for the UK government to make more flexible regulations in a number of areas, with Ms. Hall suggesting that these therapies may be one area where we see regulatory changes in future.
At present, Dr Roberts has highlighted several areas of medicine where people are thinking about using gene editing technologies. There has been, for example, successes in ophthalmology and the treatment of inherited retinal diseases. He stresses however that there has been a cautious approach as a result of safety and technical considerations, which means that gene editing is not yet possible or is increasingly complicated for a number of inherited conditions. From a clinical point of view, he notes that part of the challenge today is managing patient expectations. While exciting research is happening, we need to be careful not to over-promise. In the meantime, other technologies are used to stop inherited conditions from being passed onto the next generation in a family, including prenatal genetic testing and pre-implantation genetic diagnosis.
In reflecting on the longer-term view and the social and technological context in which these discussions are taking place, Dr Franklin raised the case of a Chinese doctor who has done work to modify an HIV-related gene through gene editing. She noted that when he revealed his work, he compared himself to Dr Edwards – a man who famously in the 1970s chose to pursue IVF without any clear regulatory framework in place. She suggests that history can be useful for us in thinking about gene editing, while noting that no other country has the kind of legislative infrastructure that the UK has in this area. She noted that the future of regulations around CRISPR is an incredibly important question, as it is being commercialized quickly and is by far the most powerful translational biomedical technology we have seen. Here, Dr Franklin emphasized the need to ensure that we take steps to ensure that there is a robust level of public confidence in the legislation which will govern, for example, somatic gene editing for new forms of fertility treatment, and suggests that we do not presently have a terrific example of what that looks like.
Throughout the discussion, expert guests also explored questions around the potential use of genome editing technology in complex disorders, how to balance regulation for the robustness of science to be using these technologies, how to manage commercialization, and the history of past debates around embryo research. Here, panelists emphasized the importance of science communication for reducing uncertainty and increasing trust, and the need to ensure that gross oversimplification is avoided in communicating the benefits, risks and workings of these technologies to the public. They argued that there are conversations to be had between clinicians and patients, between publics and regulators, and among ourselves as we think about the questions that these technologies open up and how we want to live with them.
CSaP: The Science & Policy Podcast’s four-part miniseries on Science, Policy and Genetic Technologies was released throughout February 2021. This series is available across all major podcasting platforms, including Spotify, Apple Podcasts, Google Podcasts, RadioPublic, Pocket Casts, Podbean, ListenNotes, Acast, Player.FM, Podcast Addict, and Castbox. This series was hosted by Dr Rob Doubleday and was produced by Kate McNeil with the support of research assistant Alice Millington.