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Who's advising the government on human genetics?

29 June 2015
By Dr Alice Maynard
Director of Future Inclusion
Appeared in BioNews 808

I served on the Human Genetics Commission (HGC) as a lay member from 2006 to 2012, and found exploring new developments in this area fascinating. On one hand, excitement - the push to a future of opportunity; on the other, uncertainty - the risk to a society we know and trust. I am forever grateful to the HGC for helping me understand my visceral response to some new developments - the 'yuck factor', as it has been so picturesquely called - getting past that to recognise the real opportunities and risks that such developments created.

If there's one thing that the experience taught me, it was the importance of debate. Picking up a new development, staring it in the face, tasting it, touching it, rolling it around and moulding it - exploring the opportunities and facing the risks, and finding an independent, socially responsible balance in the advice we provided to government. Crucial to that debate was hearing the voices of others - those affected by a development, but also those not so obviously affected, because genetic developments and other advances in science are not just about those of us directly impacted; they have an impact on us all.

But the HGC is no more (see BioNews 660). In its place, the government set up ESBAC - a committee of experts whose job was 'to provide expert advice to support policy development and priority setting in healthcare science'. A more exciting version of this appears later: 'to add value, interfacing science with ethical, social and economic implications to inform policy making'.

ESBAC's remit was wider than the HGC's - it covered 'new scientific developments'. But it was not intended to cover 'ongoing issues' unless there were new developments, so areas tackled by the HGC (such as advice on first cousin marriage and over-the-counter genetic testing) were out of bounds. Nor was it able to engage as widely as the HGC - a stakeholder forum took place in May 2013 but its regular meetings were closed to the public. And now ESBAC too seems to have fizzled out (see BioNews 742). Its last recorded meeting was in September 2013, and it formally disbanded in May 2014.

Does this matter? Does the government need ethical advice about new developments in the sciences, and genetics in particular? I think so. Progress is inevitable and, good or bad, there will be far reaching implications for us as individuals and for society as a whole. Given the fundamental nature of the impacts that we could see on the human race, regulation is needed. It's the government that has the job of deciding how draconian or light touch it should be. But ministers and civil servants must not draw back from the day-to-day grind - policymaking and parliamentary debate, budgets and bartering. Lobby groups on both sides will seek to sway opinion, and it's hard for government to engage directly and really hear the voices of those who deserve to be heard. Furthermore, others who might not have had encouragement or opportunity to weigh the issues - practitioners and the public - benefited from the HGC's debates and reports. Current plans to allow access to medical (including genetic) data for research, for instance, have far-reaching implications that call for thorough examination and independent scrutiny.

A key issue in the sourcing of such advice is the diversity of voices. The HGC made the distinction between 'lay' and 'expert'. I would question whether there truly are experts who can predict the impact of new developments on society. There are many eminent specialists in a variety of relevant fields who understand the way things are now infinitely better than I do or ever could. But none of us really knows what the impacts of new developments will be - indeed, we don't even know what new developments there will be in the longer term - so any source of advice needs to take in all aspects of new developments, balancing opportunity and risk, and this won't necessarily come from 'experts'.

I am not proposing a reincarnation of the HGC. Things have moved on, and there were certainly aspects of our work and our engagement that could have been more effective. An independent body, however, accountable to government and the public whilst holding government itself to account, is crucial to making sound decisions about shaping our future. Progress will most affect those not yet born, but it also affects you and me now - this is 'our stuff', and all our voices, expert or not, should be heard by practitioners, public and government alike.

SOURCES & REFERENCES
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