Meet our volunteers: an interview with Gareth Tudor-Williams

I’m a paediatrician specialising in HIV and blood-borne viruses in children. I worked in the USA from 1989 to 1994, learning the basic science and clinical applications around HIV medicine in children at Duke University, N. Carolina and the National Institutes of Health (NIH), Bethesda.

We were doing very early phase research studies involving children from up and down the East Coast of America. Many were living in poverty and had limited access to healthcare. They were being flown to NIH to be part of the research, which raised the ethical issue of balancing access to potentially life-saving research with the need to protect participants and ensure fair, voluntary involvement. When I came back to the UK, I was relieved that within the NHS we could offer high quality care whether or not children were enrolled in clinical trials.

I first joined the research ethics service at St Mary’s Hospital in Paddington in 1998. Eventually, when the HRA set up independent RECs, I was overjoyed. For me, that was absolutely the right way forwards. I have nothing but praise for this system.

It keeps me in touch with an amazing group of people. I really enjoy my contact with colleagues on my REC, and I have a very good relationship with each of them. They’re wonderfully different.

We’ve had a lot of change in our committee recently, which can be challenging, but I still have members I can absolutely rely on who are full of insight. Newer members are already beginning to speak up and find their feet, which is lovely to see.

It also brings us into contact with cutting-edge science and biomedical research, which keeps us intellectually engaged.

For me, at this stage of my career, it’s very nice to give back after years of doing clinical research. I can help enable the next generation and improve their protocols. We often pick up things they haven’t considered, which is rewarding.

The most important thing is that we feel we are all on the same side. We want good-quality research to be facilitated and undertaken. We have a good track record of approaching this constructively, and I really enjoy it.

We’ve had some incredibly interesting protocols come across our desk.

The COVID experience was extraordinary. I got involved in the fast-track RECs and was hugely impressed. The complex clinical trials coming forward were a highlight because we were able to move quickly and show a way forward in a crisis.

I also think about ambitious studies like the Generation New Era study, which planned to recruit 30,000 infants across the UK. These cohort studies are hugely interesting and raised important ethical questions, particularly around recruiting hard-to-reach populations and the use of higher incentives for some participants to achieve inclusive enrolment.

We helped them find an approach that felt ethical. That was a significant example of a large study that required careful consideration.

I’d want them to know that there is a lot of enjoyment and stimulation that comes with being a REC member, but to also have a realistic understanding of the time commitment.

It’s important that you attend a REC meeting in action before joining so you have a clear understanding of what’s expected. The work is very fulfilling if you can contribute fully and keep up with the reading of research applications.

I would like to say a huge thank you to the volunteers on my committee, especially the vice chair and alternate vice chair. They contribute a great deal, and I’m very grateful.