Author: Eleonora Lugarà Edited by: Ruth Sang Jones
In a time of such rapid advancement in the field of genetic engineering, the need to understand the beneficial sides and limitations of gene and cell therapy is becoming a moral imperative to our society.
In this article, we interviewed Richard Ashcroft, who is currently a Professor of Bioethics at the Department of Law at Queen Mary University of London and a Fellow of the Alan Turing Institute. We talked about the role of ethics in the nascent gene editing field and the part that bioethics plays in our everyday life.
1. What is your role at the Department of Law? Can you give us an insight into your responsibilities and your daily routine at work?
I cover the role of Professor and Head Deputy of the Department of Law at Queen Mary. This means that I help run the LLM (Master of Law) program and I teach modules on new medical technologies, ethical aspects of migration and law related to immigration. In the Medical School, I teach courses on human rights in public health. I supervise PhD students and I am also involved in several different research programs about genomics and use of gene therapy in pregnancy; at the moment I am in fact writing up a work package for a grant application about a possible clinical trial in pregnant women. I am generally involved in every daily need of the department, plus advising about early career development, overseeing the promotion application process and assisting with the Athena Swan Charter applications. I also spend a lot of time reading other people’s papers and evaluating them! Outside the department, I routinely provide advice and ethics support to life scientists and medics about their research and about ethical issues present in the clinical practice. I am also a member of the Tobacco Advisory Group at the Royal College of Physicians in London, and I deal with policy issues regarding tobacco control.
2. Can you describe your career steps from postgraduate to Head of Law at Queen Mary university?
In the early 90s I did my PhD in ethics of science and particularly of physical sciences. I was not initially interested in working in the medical sector and during the end of my PhD, I was applying for many jobs in different academic fields. It was then that I came across a job about ethics in clinical trials (1995). At that point, nobody really knew what it was and I was also unaware that there was a really exciting whole new field rapidly expanding. I got the position and since then I was able to move from post doc to lectureship quite quickly. The medical science field was just about getting into the area of clinical trials and I then got a Wellcome Trust project grant which permitted me to start a research project early on. After that, I worked in several UK institutions teaching medical law and medical ethics to medical students and doctors. It was exciting to participate in the pioneering of bioethics in clinical trial and gene editing in UK!
3. What is the role of bioethics in the modern society? And how is it reflected into day-to-day work in a genetic or medical laboratory?
In modern society and in research institutes, bioethics appears in the governance and bureaucracy of clinical trials where the researchers must have ethical approval by an ethics committee to carry on any work with patients. In fact, quite a lot of my publications are in that area. This involves asking ourselves whether people are following the rules and if these rules have been applied correctly so far.
There are a number of regulatory agencies which are taking interest in bioethics, e.g. the Human Fertilisation and Embryology Authority, which covers subjects such as in vitro fertilisation and assistive reproductive technologies in the UK. They did quite a lot of work regarding the potential of genetic testing and selection in embryos and sperm in eggs.
We also have national think-tanks (policy and research institutes), the most important one in the UK being the Nuffield Council of Bioethics. This independent body examines and writes reports on different important questions on bioethics and I was personally involved in one of them concerning genome editing in gene reproduction (2018). This report had quite a lot of press coverage since it is a critical issue to the general public and to a wider scientific community as well. It is very important to chart the course for how the technology can be used safely and in the public interest. Roughly around that time, the scandal broke out about a Chinese researcher that performed gene editing manipulation in human embryos, seemingly without going through the proper oversight and got himself into very hot water! The world was quite shocked since he did it without the appropriate ethical approval and especially because the world did not have enough public discussion about what is ethical and what should be allowed or prohibited. This raises a lot of questions on how gene editing can be used for public interest and it is a major controversy worldwide. Bioethics should be both democratic and guided by academics and professionals. Certainly, the best way forward is to have an open dialogue between the public and the experts.
4. What were the main challenges of these last 10 (or even 20) years in bioethics, given the explosion of techniques for the manipulation of DNA?
There are some “classical challenges” such as abortion, organ transplantation, some aspect of assistive conception, euthanasia… to some extent there is a general consensus but there is still a lot of debate about them. I have followed ethics in genetic medicine for about 25 years and it has definitely evolved, both for what is technically possible and where the focus of research is, but also what the public attitude has been. Other related debates are about the use of stem cells in medical research, as well as the application of artificial intelligence (AI) or machine learning. AI is rapidly evolving and expanding into medical research, such as in neuroscience fields, thus birthing new bioethics research in this area. I took the conscious decision to get involved personally in this area. This is because it is always important to stay up to speed with the emerging technologies and to have a reasonable understanding of what the basic principles are. It is about now that everything is blowing out!
5. Which are the key ethical concerns regarding CRISPR? What is your opinion on the CRISPR-derived-humans?
I served for several years a member of the UK Gene Therapy Advisory Committee in the 2000s and I can say that key ethical concerns about CRISPR are not dissimilar to those of the initial gene therapy which wanted to correct single point mutations. The difference is that, while the “old” gene therapy could have been problematic in term of health hazard (especially if it integrated in a critical point of the host DNA), CRISPR is much more efficient, particularly exact and hence has probably less side effects and is less dangerous. A more profound issue regards the use of the technology in reproduction, e.g. to eliminate a human disease by altering the genome in ways will be inheritable by future generations. Is it morally acceptable to alter the genetic makeup of a child that may not have even been conceived or certainly not born and did not give any consent? There might always be the risk of causing mutations which may be harmful in later stages of life. The real ethical question is that even if we can use CRISPR and use it safely, is it right to do it? Certainly enhancing human functions in ways that are non-therapeutic is a different distinction!
I am generally in favour of looking for new technologies which can address human disease and prevent significant pain and unhappiness, but it needs to be done in a careful way.
6. Are Medical Law and Bioethics differently applied to academia and pharmaceutical industry?
I have just occasionally been involved in bioethical consulting in the private sector (biotech, pharmaceutical company etc.), but quite often – and especially if the clinical trials are happening within the NHS walls - the pharmaceutical companies are establishing a partnership with an academic associate. The NHS hospital and the Medicines & Healthcare products Regulatory Agency compulsorily require ethic approval for any clinical trials and drug licences released.
7. What is the best advice you can give to an academic trying to establish a gene editing laboratory?
I would not presume to give any advice on the scientific or technical aspects of setting up a laboratory, but it would be quite interesting to know what they are! I would recommend building in an element of public engagement from the very beginning. Set up outreach to as many schools and colleges as possible to educate the wider public and also to encourage people to think about science as something that they access and possibly consider for a future career. We should discourage the idea that science is just something for unreachable people in white coats who are very secretive about their work. The more the public knows, the more will be ethically approved and the progress continues.