Team:UCL/HP/Silver/Law and Regulation
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Law + Public policy in London
OUR MOTIVATION
Legal regulations can prevent even the best scientific ideas from coming reality. At the same time, there is a lack of communication between policy developers and the scientists. In order to breach this communication gap and find out how existing policies can influence the implementation of our anty-ageing strategies and if our ideas can influence policy, we talked to a few professionals involved in science policy and looking out for the older members of our community.
Kier Starmer
We wanted to understand the impact of present UK and EU policies on our idea of treating ageing, and its impact on policy. As an approach to this we met with the Shadow Secretary of State for Exiting the European Union of the Labour party, Sir Keir Starmer. The talk started with a brief overview of our project and how the focus was not on prolonging life but rather on healthy ageing. Sir Starmer’s response to our project was “When do we start?” with acknowledging the need for the right interface between research and the society.
Our meeting with Sir Starmer made us appreciate the impact our project could have on the population because people would live healthier for a greater proportion of their lives. This would have a huge ramifications in terms of policy; as the ageing population already has an influence on health practices in particular the National Health Service (NHS) in the UK.
One of the concerns with our project which we raised, was on how gene therapy and treating ageing would affect public policy. According to Sir Starmer, healthier people would want to do things for longer, and the long term impact of this could lead to the question of what kind of society do we want in the future? This made us understand the need to enable live healthier despite when growing old as we live in a multicultural society with a dynamic culture.
Furthermore, although educating the general public on the concept that ageing is a disease could be challenging, our project would be a huge interest for pharmaceuticals and biotechnologies in marketing our product. Selling our project as a preventative therapy, similar to vaccines, would get the NHS interested as a long term benefit. Making this therapy available to everyone through the NHS to a vast majority of the population would be in accordance to the responsibility of health shared both by the individual and the government. In addition, the ability to use science to contribute to healthy ageing would be incredible for hugely deprived communities within London facing many health issues.
Engaging Sir Starmer, we further discussed with the feasibility of introducing this therapy to 3rd world countries. His initial response was “yes”; and further advised that we deeply consider the pathology of health related issued in 3rd world countries, the resources present, causes of ageing and life expectancy. The advantage our project would bring to these countries would be anything that would take the stress off their limited resources.
Finally with the resent advent of Brexit, we took the opportunity to find out the impact of Brexit on research and the synthetic biology community. Sir Starmer found Brexit as a catastrophic step with a strain on the economy, justice system, environment, and may restrict free movement of students and labour which may have an impact on research including the international synthetic biology community. However, the UK would need to set up good standards.
In the end, Sir Starmer found our project very fascinating, with an interest in knowing the outcomes of our project, and our performance in the giant jamboree!
THE RESULT: PARLIAMENTRY QUESTION SUBMISSION
The result of our discussion with Kier Starmer was that we had the exciting opportunity to submit a parliamentary question. Parliamentry questions are put forward by our representative member of parliament for discussion in the House of Commons. This means that Parliament would have directly discussed and answered our synthetic biology question. The questions we submitted were:
1. What will the government do to ensure that the UK's place in the international scientific community remains intact through Brexit negotiations? What impact will Brexit have on the UK's synthetic biology regulations?
2. What are the predicted changes in UK demographics and what funding pledges are there for innovative technologies that seek to combat the problems that would arise as a result?
3. Given that, under this government, synthetic biology was identified as one of the 8 great technologies that the UK must focus on to grow our economy, what can the government do to make synthetic biology therapies (such as therapies that increase healthy lifespan) more accepted by the public and eventually be administered by the NHS?
By raising the issue of ageing and synthetic biology to the Houses of Commons we can ensure that important people leading and making decisions for our country can make a difference to our project and influence the development and translation of our therapies to the real world.
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David Kurten (London Assembly)
We wanted to understand where our project fits in with public policy and are trying to gain a well-rounded view. To do this we met with David Kurten, a UKIP member of the London Assembly. After explaining our project we went onto discuss what priorities the elderly population has, the public perception of GM and the effect of Brexit on science research. Here is what we discovered:
- Science is ahead of politicians knowledge, similarly, legislation is slower than the rate of research. There is the potential therefore for research to accelerate without real consideration of the ethics.
OUR SOLUTION: thoroughly discuss and explore the ethics of our project.
- Gene therapy Introducing something unnatural- genetically modifying human DNA. Again, sciences races ahead of legislation. Requires the Government of the day to be behind it for it to become law.
OUR SOLUTION: Talk with an MP about the process of legislation with regards to GM, synthetic biology and science research.
- Consent: this is important with regards to who will be affected.
OUR SOLUTION: Talk to lots of people to see if they would like to take a therapy/get in contact with those who already have.
- Vested interests: political and green and companies, research funding bodies.
Knowledge and transparency of information important.
OUR SOLUTION: Present our research with no bias and be transparent with results.
- What can we do to change public opinion?
Existing propaganda has influenced the opinions of the public. There is a need of transparency. e.g. of labelling food.
- Semantics of GM vs synthetic biology ‘advancing progressing, doing science’ vs biotechnology, again has positive connotations.
- UKIP policy: look into what the science says. Allow research to happen on an objective basis as well as to ensure that large data sets are used.
- Loss of faith in scientists due to medias portrayal - faking data news story. Suggested that raw data directly to public to let them make own decisions. (we are aware this is ridiculous).
There is a need however for communicating the information without a bias. Media- sensationalism sells. Deeper level of understanding is needed. Currently a dumbing down of culture rather than this uplifting of culture.
- On Brexit. 20 billion to EU, 10 billion back, net fee of around 10 billion. A lot of EU funding is British money. Not going to effect the UK for funding (just missing out). Collaboration will continue- not dependent on EU dependent upon innovators and scientists regardless of EU. People that are involved. Long term- cutting out a layer of bureucracy- more efficient and less
- Medical without ethics, looks great. Changed DNA structure - lots of discussion is needed. Is this natural or not. Personal view- cautious, case by case basis. Not a fan of changing DNA, it’s evolved over time to how it is now. Short term benefits- what about the long term implications- they are unknown. Should we be doing this? ‘perfect super human race’ personally- should not be playing around of DNA. Taking ethics, morality and faith out of the question, we should do it. But adding these I think we shouldn’t.
- Ageing: unintended consequences of action. population increase/policy change- working longer, pension system would collapse.
Increasing retirement age- public wouldn’t like it. political suicide. demographics of voters- older people vote more.
Jason Blackstock
On the 6th of September 2016 we had a meeting with Dr Jason J Blackstock, who is head of Department of Science, Technology, Engineering and Public Policy at UCL. He has a background in physics and has since worked to connect the world of public policy and engagement to the world of science.
We started off by explaining our project and few main aspects of it, especially our ideas about oxidative stress and our potential SOD gene therapy. We then went on to talking about how the public generally reacts or would potentially react to our research of ageing and our potential products and solutions. He told us that the public is tremendously willing to try technologies that they know work but they do not trust experiments being done on them, hence he said the main barrier we would face would be in the medical sector rather than that of the public. The main thing we need to think about is testing and design pathways in accordance with regulation, which in such a fast growing sector is always changing. He also reiterated that, especially in North America and Europe, the government will not just let anything pass and thus once regulation has been approved the public will be willing to try this new and safe product.
Jason then explained to us the amounts of expenses associated with these regulatory pathways. Telling us that one important thing would be to find a drug or at least a drug delivery mechanism that is analogous to ours and learn from those drug trials and better our own product. He also enforced the importance of working with the regulators, as the more people are willing to work with them, the more they can embrace your ideas and what you are working on. Along those lines he advised us to look into IP protection of our ideas as soon as possible, with the help of UCL, that can help us to decide what and how to protect.
We went on to ask him what he thought of our project in general, which he said he found interesting and innovative as well as having thought about the biochemical delivery methods to an ageing problem. We also brought up the controversial topic of GMOs and public policy, to which we were advised to not put those to words together in association with our research due to the bad reputation. As the general public perceive GMOs as usually crops, we do not have to associate our research in that manner, although in theory we are also changing the genes of organisms. Linking to that point he said that GMOs and the research we are doing, should be accepted over the long term as it is in the natural course of what is happening and most people might not even question it. Nonetheless there should always be public consultation about these sorts of issues.
Furthermore we inquired about the link between public policy, our project and politics. Jason told us that politicians nowadays are looking at the ‘grand challenges’, one of which is dealing with the ever-growing and expanding population of the elderly. Although this should not be our main concern, the work with regulatory systems should, further down the line when it is closer to a promising product, it will be discussed politically.
In connection to politics we also inquired about Brexit and its effect on public policy, to which he told us that Brexit hasn't really changed anything substantive, in terms of our project. It will change many things but not drug safety or the regulation process (i.e. the UK will not develop a regulatory system separate from the rest of the EU, as that would lead to continuity issues.) In terms of funding he said that there are bigger drivers changing the funding environment than Brexit and especially in terms of our project we are more likely to get industrial funding later on in the process than EU funding.
When inquiring about how much input religion has on science policy he told us that it does not influence day to day decisions but it does set a context in terms of “who we want to be as a species.” This in turn will then influence our ethical choices about what we should or should not do. Overall decisions for funding are mostly made on what the treasury thinks will make the economy better rather than religious input.
Overall Jasons main input was to deal with the IP issues as soon as possible to protect our idea and to consider what we want to do with our project as iGEM comes to an end.
