My journey into research ethics began more than 30 years ago and had a very unusual beginning. When I was in my twenties I was working as a civil servant and lived in a flat in London with a friend.
One day I came home from work to find her crying. I assumed her tears were caused by a bad breakup, but they were the result of her job working as a press officer for a small mental health charity.
She had been given some statistics to turn into a story, but she could not make sense of them. I helped her pull together something she could use, and she presented them at work the very next day.
A week later I received a call from the charity’s Chief Executive who said they were really impressed with how I was able to analyse the figures and he invited me to join the charity as a Treasurer, which I happily accepted.
When you work for a small charity, unlike being a civil servant, you are expected to deal with everything, from staff disputes to tax arrangements, so one day I was asked to represent the charity at a local health council committee meeting.
I started attending these meetings regularly and one of them was held to decide if University College London NHS Foundation Trust (UCL) should be allowed to rebuild their hospital building in Euston.
At the time, the development was very controversial, and the meeting was interrupted by protesters. The UCL staff did not know what to do but I was able to calmly restore some order.
UCL were impressed with how I handled the meeting, and I was invited to become Chair of their Research Ethics Committee (REC). I knew nothing about research ethics, so I was surprised and worried when they asked me, but I rapidly found I enjoyed it.
You don’t need to know any fancy theories but rather you need to ensure the participants understand what they are letting themselves in for.
Our role is to protect research participants and to ensure they don't come back and say ‘if only you had told me that I would not have agreed to take part’. That is, for me, the core ethical issue.
While I really enjoy being Chair, it is demanding work. We read a lot of documents and each research application is more than 100 pages long.
But it is really rewarding and fascinating. I never stop learning about different conditions and new treatments.
Some people in the research community think we are here to stop research, but we are here to help.
Research ethics is important as it is the only way of making sure the medicine we use is safe and available.
As the research ethics landscape changed, the UCL REC would eventually become part of the Camden and Islington REC, which I chaired for more than ten years. I became chair of the Hampstead REC in 2013.
In 2016 I was awarded a British Empire Medal in recognition of my contribution to research ethics. It was an immensely proud moment, and I was extremely honoured that our work was recognised in this way.
A lot has changed since I became involved in research ethics. With the establishment of the Health Research Authority in 2011 we now have a much better and more thorough and joined up ethics approval system.
But going forward we need to involve and talk to local communities to find out what matters to them.
We live in a society where there are lots of groups with diverse needs and we need to make sure we reflect them.
Stephanie Ellis, Hampstead Research Ethics Committee Chair