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Influencing Policy

Scientific Evidence in Policy Making

on December 11, 2018

By: Alison Cranage, Science Writer at the Wellcome Sanger Institute
Date: 11.12.18

Evidence is a vital part of policy-making. Scientists are increasingly encouraged to engage with the public, and for those whose work could have an impact on policy – from climate change to disease outbreak tracking to genome editing – that could be in the form of influencing laws and legislation. Getting involved in policy making is one way researchers can make a difference.

Last summer the Wellcome Genome Campus Advanced Courses and Scientific Conferences team organised a course for researchers interested in getting their research evidence used in parliament. The course also catered for researchers looking to move into policy making as a career. We take a look at some of the key considerations for researchers who want to get involved.

How to get evidence into policy

Policy makers are often desperate for evidence, and need it quickly. But it’s not the only thing that shapes policy. Values, money, time, political context, competing claims and vote-winning capacity are all a factor in deciding priorities for politicians and civil servants. 

Avenues

One of the hardest things for anyone unfamiliar with the inner workings of Whitehall can be understanding the routes in. There are many avenues where evidence can fit, and those vary depending on the context.

  • Via a consultation, when policy makers will becalling for evidence.
  • Through an intermediary. Scientists can contact policy teams at research organisations like funders, learned societies, universities, institutes and charities for advice on how to approach the right person or committee.
  • Via a local MP, or one who has an interest in your research area.

The policy team at the Sanger Institute is led by Dr Sarion Bowers, and works on data sharing, GDPR, animals in research, immigration and Brexit, bringing the Institute’s voice to debates around the world on bioethics and the use of genomics and data in healthcare.

Formatting evidence

Evidence needs to be presented in a way that connects with policy makers. Policy makers will struggle to engage with the policy implications of research if it is buried in a scientific journal. Evidence needs to be presented in clear language, without jargon, picking out the keypoints to tell a story.

The exact format for evidence will depend on the context, though the general advice is to keep it short. The most effective arguments are made when there is a very clear point. Picking key examples, or case studies, is a good way to make your case. Everything needs to be underpinned by the evidence, but it needs to be digestible. Someone reading your work won’t analyse it themselves – it is better to tell them what it means.

Nuance does have a role, but a balance should be struck in order present your position honestly without detailing every counter arguments with equal weighting front and centre. If you are using evidence to advocate for a specific action, you need your message to be clear.

Career Advice

For researchers who want to move into the policy sector as a career, Sarion advises getting as much experience as possible as a first step. That could be through an internship, for example.

“I’d also advise people to start writing. Write blog posts. Begin to develop those skills of creating a narrative. Practice building anevidence base, without the evidence being too overwhelming. Reading thoroughly is also important. Find books, and stories of how legislation came into being.”

Sarion Bowers, Wellcome Sanger Institute

There are Masters courses available, or you can join the next ACSC course at the Wellcome Genome Campus.

Making a difference

Getting involved really can make a difference. Scientists at the Wellcome Trust Centre for Mitochondrial Research and Newcastle University were an integral part of the UK becoming the first country in the world to allow mitochondrial donation. The technique gives families affected by mitochondrial disease the chance of having healthy children. The work of the Wellcome Trust policy team, together with others, led to the vote of support for mitochondrial donation in Parliament in February 2015. Read more on the Wellcome Trust site.

More and more researchers are becoming vocal about issues, not just in science, but also about issues that affect them and their teams, like immigration. Researchers really can make a difference.

About the Author

Alison Cranage is the Science Writer at the Wellcome Trust Sanger Institute

Find out more:

Science Policy LinkedIn Group.

A dedicated Science Policy LinkedIn Group is being launched soon. The aim is to provide a platform for discussion, knowledge exchange and collaboration, to help break down barriers and enable improved evidence-based policy making. To join, contact Catherine Holmes at Advanced Courses and Scientific Conferences for an invitation.

Resources:

People:

Influencing PolicySanger Life

Claims of genome edited babies shock the world

on December 6, 2018

By: Sarion Bowers, Policy Lead at the Wellcome Sanger Institute
Date: 06.12.18

The build up to the Second Genome Editing Summit in Hong Kong was a fairly routine affair. There was little to draw attention to the impending gathering of people from across the world to discuss the important and technically complex topic of altering the human genome. But the day before the summit began, there was a moment of drama as it was announced the Chinese Academy of Sciences, one of the co-organisers of the first summit in Washington two years earlier, had dropped out months before. The news created ripples and was sufficient to pique the interest of a few journalists. It seemed like this might be one of the bigger stories of the summit. Within hours the story was lost in history-changing news that a Chinese scientist, He Jiankui, had edited the genomes of embryos and implanted them, resulting in the birth of twins. Global shock and condemnation were immediate.

Scientists and clinicians have previously treated a small number of patients using genome editing, but in these cases the changes were made in cells that would not be passed on to the next generation, and only in one type of tissue, usually blood or lungs. In some of the cases, the cells containing the changes died out as the person’s own, unaltered cells took back over. What He Jiankui had done was completely different. By editing embryos, the changes made will be passed on to the next generation. Every cell in these babies’ bodies will contain the changed genome. It was also illegal in many countries including the UK and the EU.

As news of the edited babies spread, more details emerged, but so did conflicting accounts of what had happened. It quickly became clear that He had chosen to edit healthy embryos that were part of an otherwise routine IVF treatment. He had altered a gene known as CCR5.

HIV immunity?

Naturally occurring variations in CCR5 are known to make individuals more resistant to HIV infection, but the full function of CCR5 is not known.  There is also evidence that the same variation that makes an individual immune to HIV makes them more susceptible to West Niles Virus. These are complex systems and because He had edited it in the embryo, every tissue carries the change in CCR5. If the CCR5 gene has a function outside the immune system, those body functions will be affected too.

Hot on the heels of the news that He had edited healthy embryos came news that the editing had “worked” in one twin, but had only partially worked in the other twin. This second twin had one altered copy of the CCR5 gene and one original copy. He had chosen to implant this embryo anyway, despite the fact that partial editing means the baby probably won’t have immunity against HIV infection – He’s justification for the editing in the first place.

Next followed the hospital He worked at denying all knowledge of the project and denouncing the work. Questions quickly followed about the oversight and ethics approvals for the research, the answers to which seemed only to create more questions. None of the work had been peer reviewed and little data was available to verify He’s claims.

The Summit

Meanwhile, the Summit, which hadn’t begun when the news story broke, was now opening with a bang. More importantly, He was one of the delegates. As experts on different aspects of genome editing were taking to the stage, the news of He’s work was making headlines around the world. Journalists were descending on the venue, and organisations and individuals were putting out statements largely denouncing the work.

In a frenzy of media attention, less than 48 hours after his announcement, He joined a panel discussion with scientific heavyweights including Kathy Niakan, the first scientist in the UK to get permission to edit embryos for research purposes. The panel discussion had always been part of the agenda, but now had an entirely new significance.

The fact that He joined the group and stood up on the stage to talk about his work is worth reflecting on. In the aftermath of his news, which he suggested had been unintentionally leaked, sensationalist headlines and statements condemned not only the science but also the scientist, sometimes in the most heated of terms.

Most scientists are unused to media attention and many will actively shun it, but He stood up. He presented his work and answered questions from the panel, the audience and the assembled press. His answers were not particularly reassuring; his participants were recruited in a manner unlikely to be considered ethical in many countries. His reasoning for choosing CCR5 was flimsy and his view that his work was ethical and in compliance with good practice was in stark contrast to the views of much of the world and the audience directly in front of him. But at the same time, He was there.

There is probably little to defend in what He did. The line between pioneer and villain is vanishingly faint at the best of times. Whether someone is deemed a visionary or a cowboy has more to do with popular opinion and the outcome than their motivations or the precautions they took. He has leapt ahead with a technology we do not fully understand and the consequences for the twins could be severe indeed. The justification of providing HIV immunity, when HIV transmission to embryos is preventable and the disease has management strategies, is weak. Editing healthy embryos seems indefensible. But, the worst thing we could do now is drive scientists like He underground.

Genome editing – when, not if

Scientists, regulators and policy makers have known for a long time that it was a case of when, not if, an embryo would be edited. We should use this moment to learn what we can, we should ensure these babies do not disappear, left to an uncertain fate. It may be unpalatable to many, but it is imperative that we engage with He. Not least to know what was done and how he got so far unchecked, so we can all learn lessons from this incident. He did not operate in a vacuum, and there are a lot of questions that need to be answered, many of which will start with his account.

Scientists are often driven by a combination of wanting to make a difference and wanting to be first. Keeping scientists in the fold is one of the most important ways scientists can regulate themselves, particularly where legislation doesn’t. He has said his desire was to tackle a health crisis in China – to make a difference with a challenging issue. It is probably easy to dismiss He as an unregulated outlier, but the drivers of stigma relating to a health status, desperation for a family, and lack of access to health care are universal problems. If we fail to tackle these global issues, genome editing of embryos may be an attractive option to the desperate and the vulnerable.

The future

The organising committee of the Second Genome Editing Summit has released a statement, reiterating their view that genome editing in a way that is inherited should not be allowed at this time. They also reiterated the need for countries to engage in public discussion and debate on genome editing. He has shown that genome editing of embryos is a real consideration, but he has also shown us that the global science community is together in its opposition to editing of embryos at this time. Although undoubtedly unintentional, He has also offered us a meaningful starting point for that public conversation – which might ultimately be the most important thing that comes from this.

About the Author

Sarion Bowers is Policy Lead at the Sanger Institute