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Event Review: The Future of Your Genetic Health

12 March 2018
Appeared in BioNews 941

What are the medical and ethical implications of genetic technologies such as gene therapy, personalised medicine, and genome editing? This wide range of topics was tackled in an ambitious public panel discussion hosted by the UK's Royal Society last week.

The Future of Your Genetic Health was part of a programme of work on genetic technologies by the institution. Indeed, the hour-long event followed on from the publication of a report earlier that day on the same issues (see this week's BioNews story).

The expertise of the discussion panel was as broad as the topics covered, and included: Professor Robin Lovell-Badge, a stem cell geneticist from the Francis Crick Institute in London; Dr Sarah Chan, a public health ethicist from the University of Edinburgh; and Dr Andrea Nemeth, a clinician scientist at the University of Oxford.

The event started with each panellist giving a helpful overview of the state of the art. Professor Lovell-Badge explained that in the last few years our understanding of DNA has grown enormously through techniques such as whole-genome sequencing, and large-scale projects such as the 100,000 Genomes Project. He added that techniques that allow us to manipulate or edit DNA have also progressed, with advances such as CRISPR/Cas9.  

Dr Nemeth followed with a clinical perspective, providing an optimistic overview of recent improvements in gene therapies and explaining that stem cell research continues to improve our basic understanding of why diseases develop and how they might be better treated.

In response to a question about 'why now?', Dr Chan noted that the advances outlined by the other panel members have now progressed to a stage where their applications are no longer conceptual or reminiscent of science-fiction. All panel members agreed that the benefits of the various technologies to human health are already being seen, and that having conversations about what constitutes safe and acceptable use is vital.

It was also interesting to hear Dr Chan reflect more widely that these conversations are happening in the context of a political and social shift in the way we think about science – with public enthusiasm and curiosity.

This led to a wider conversation about regulation. Although at times it was unclear which precise technology was being discussed, a clear theme was that regulation can have an important role in ensuring that patients have safe and equitable access, and are not deceived or exploited. It was similarly agreed, that regulation should not be so restrictive as to stifle innovation.

The latter half of the event was opened up to questions from the audience. The first question drew the conversation back to regulation, but within the context of Brexit, and asked whether it will ever be possible to have an international regulatory body.

Public discussions around Brexit can often be very pessimistic, so I was pleased to hear a considered answer that examined whether a single EU level regulation is even what we should be aiming for. Instead, it may be helpful to recognise that different countries have different cultures and opinions, and so an alternative approach could be to find ways to work together whilst allowing regulatory flexibility across countries.

A second audience member then commented that while physical risks of new technologies can be tested, he was unsure how the moral risks can be tested – how will we know when something is morally acceptable?

I was impressed by the articulate answers the panel members were able to give to such a challenging question. Dr Chan agreed that moral concerns cannot be answered by science, but can be mitigated by trying to understand why certain uses of technologies are considered contentious. While it is not the intention of such conversations to change people's minds, often people do alter their opinions once they have a greater understanding of the benefits and limitations of a technology, or are exposed to alternative viewpoints.

Professor Lovell-Badge added that the value of such dialogue has been seen before, with the introduction of IVF (in vitro fertilisation), PGD (preimplantation genetic diagnosis), and mitochondrial donation all providing past opportunity to discuss the moral concerns of technologies which impact on human DNA.

Another audience member asked how the public 'can help' with these various new technologies. With respect to genome editing, Professor Robin Lovell Badge warned against experimenting on yourself, but explained that hobbyist 'garage scientists' can do some simple and interesting experiments. He added that all have a responsibility to do science safely and rigorously, and all can play an advocacy role.

Wrapping up the discussions, the panel members recognised that it is only fair and expected that people have concerns about genetic technologies, but countered that not using them might also have an ethical impact. Dr Chan posed the provocative question of whether we want a utopic future with a complete understanding of disease, and can control disease in a safe and equitable way, or whether we want a future where we did not allow the use of such technologies. Would our descendants wish we had helped?

The choice to use genetic technologies is always going to be about the balance between risk and benefits. While some scientific advances to improve their safety may globally alter this risk/benefit profile, an individual's culture, beliefs, and ethical groundings will also always have a large role to play.

Indeed, the Royal Society's new report noted that while the public are 'cautiously' optimistic on using genetic technologies to improve human health, there are still fears and preferences for some applications over others.

While I am personally supportive of Dr Chan’s 'utopic' vision of the future, I also think it helps to remember that it should not be a goal to reach a universal consensus on the acceptability of genetic technologies. Instead, public dialogue sessions such as this one should continue. Scientific advances to ensure safety notwithstanding, working together will mean that these technologies can be offered in a manner that is understood by the public and respects the autonomy of the individual.

I believe that this is what fair and equitable access to genetic technologies will look like, and it will be realised only by scientists and the public working together is an open and transparent fashion.

9 April 2018 - by Kathryn Ashe 
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...
12 March 2018 - by Kathryn Ashe 
British people are largely in favour of using genome editing to prevent inheritance of genetic disorders, according to a survey by the Royal Society...
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