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Video Review: The Future of Your Genetic Health

9 April 2018
Appeared in BioNews 944

I thought I was keeping myself well informed about progress in genetic technologies, and what scientists and policy-makers are doing to balance the potential scientific and clinical benefits with ethical obligations. But evidently not, as the fact that some members of the public have been injecting themselves with CRISPR in an attempt to increase muscle mass, or would even consider doing so, was a complete surprise to me.

This – as well as the more conventional medical and ethical implications of genetic technologies – was covered in an evening event hosted by the Royal Society, a recording of which is now available to view on YouTube.

The hour-long panel discussion was just part of a series of events on genetic technologies held by the Royal Society, which included the publication of a report on the UK public's perceptions of genome editing (see BioNews 941). Adeptly marshalled by public engagement consultant Steve Cross, Professor Robin Lovell-Badge (a stem-cell geneticist at the Francis Crick Institute, London), Dr Sarah Chan (who researches medical ethics at the University of Edinburgh) and Dr Andrea Németh (a clinician scientist at the University of Oxford with a particular interest in neurogenetics) discussed recent progress in scientific innovation and what implications this will have on future applications.

I had no problems with the quality of the recording (apart from having to turn the volume on my admittedly ancient laptop up to 100 percent to hear it clearly). I wonder, though, why it was published as a YouTube video instead of as a podcast: I don't feel the video format added any advantage (or was even necessary) to my understanding of the event.

The discussion started with an introduction of how different genetic technologies and studies allow us to understand, treat and prevent diseases. Advances in whole-genome sequencing and the 100,000 Genomes Project has allowed researchers to gain a better understanding of DNA and the human genome, and how specific genetic mutations and severe diseases are linked.

Gene therapies and stem cell research have increased our understanding of how these can be targeted by various therapeutics, and the recent development of techniques such as CRISPR mean that DNA can be precisely edited. Dr Németh stressed that, despite these advances, that a more nuanced understanding of how our genes affect factors such as intelligence are still a long way off.

Nevertheless, these advances in technology mean that things that were once technically impossible, and therefore achievable only in the world of science fiction, are now achievable. The panel discussed how greater precision in genome editing means that techniques that were previously dismissed by researchers as too risky to attempt in a clinical context could potentially be used to great therapeutic use.

The report on perceptions of genetic technologies, which had been published earlier that day, showed that the UK public (perhaps surprisingly) does not make a distinction between the ethical implications of somatic and germ cell therapies – a fact pointed out by Professor Lovell-Badge. The public's curiosity about science should be harnessed productively to allow society to decide where the boundaries of ethically appropriate research lie. All panellists agreed that a balance had to be found between allowing research to push forward the boundaries of science, and doing this in a way that is safe and accessible to patients.

As it was, I found the discussion a little too wide-ranging and not focused enough: it touched on areas that I found fascinating, but then weren't covered in enough detail. Regulation, for example, was repeatedly returned to as a point of discussion, and this was a topic I found interesting and wanted to learn more about (particularly whether there should be an international framework for the use of genetic technologies, and how this could be introduced and administered).

The event concluded with an opportunity for members of the audience present to ask questions – but the question session was relatively short (or rather, the answers were rather long). I would be frustrated by lack of opportunity for questions, if I had been there on the day. Although the audience at the event contained a fairly high proportion of practising scientists, medics and students, which meant the panel targeted their comments and answers at them, the YouTube recording shouldn't be beyond the understanding of a lay person armed with Google, and the opportunity to pause and rewind.

Professor Lovell-Badge pointed out at the start of the event that (inefficient, inaccurate and imprecise) genome editing methods have existed for around 30 years, but significant improvements have taken place over the last six or seven years mean that these techniques are now approaching the point where they would be safe to use in humans and human embryos. If this rate of progress is maintained, the panellists' comments on 'state of the art' genome sequencing and editing techniques would quickly become out of date. The majority of the discussion focused on ethics and regulation, with the panellists careful to restrict their comments to the hypothetical and unspecific – so perhaps parts of the recording will age better.

The most interesting comments for me came at the end, as we found out what we, as members of a society, should do to aid scientific understanding and development of genetic technologies. Dr Chan suggests that individuals can help contribute to understanding of genetics and health through participation in public health studies – if your doctors ask your permission to use your samples or data as part of a large-scale study, say yes. Dr Németh, who spends approximately half her working hours interacting with patients, suggests that we should keep ourselves well informed about the technologies and issues associated with genetic health. And Professor Lovell-Badge implores us to avoid DIY genome editing.

The future of your genetic health
The Royal Society |  7 March 2018
12 March 2018 - by Dr Rachel Montgomery 
What are the medical and ethical implications of genetic technologies such as gene therapy, personalised medicine, and genome editing?
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