Introducing patients to animal research
Researchers work with animals to make discoveries about disease and develop treatments, but how much do patients know about animal research? Here Julian Walker from Genetic Alliance UK describes a project putting patients and carers face to face with animal research, and reports on their reactions.
There is a voice that’s often missing when we talk about research using animals. While those for and against such research debate the ethics and practicalities, the people animal research aims to help — patients — are rarely heard from.
That’s something we want to change, and why we teamed up with Understanding Animal Research and six UK universities to give 25 members of families affected by genetic conditions an insight into the role of animals in building knowledge and improving treatments for their own conditions. We did this by running ‘discovery days’ at local universities.
Each day began with a focus group to understand more about individuals’ motivations for attending the day, what they expected to get out of it and their level of understanding about the use of animals in research. This was followed by presentations from three researchers on their areas of study, with time for discussion and questions. Participants also toured an animal research facility to see for themselves the work that happens on a daily basis.
Many participants said they were apprehensive beforehand but keen to take the opportunity to learn more about animal research. “I went along, nervous about what I might discover but determined to keep an open mind,” says Emily Owen, a patient affected by a genetic condition called neurofibromatosis type 2. “I had never really thought about where [my] treatments originated … If it did cross my mind, it was only very briefly. As someone who quite likes animals, I did not want to think about animal testing and so pushed it out of my mind.”
Some attendees expressed surprise that the researchers were fond of the animals. “I was surprised at the bond, for want of a better word, between the animals and staff. These were animal lovers. I had imagined I would see a more detached approach, but the care and interest taken to ensure that the animals were treated with respect was to be commended,” says Maxine Mauger, whose daughter is visually impaired.
Participants were also impressed by the strict rules and regulations around the use of animals. “Throughout the talks, there was an underlying emphasis on keeping things as humane as possible during tests. I was surprised to discover that there are very strict criteria that must be met before someone is even allowed to conduct research on animals,” says Emily.
Peter Shilson, who has a family member affected by frontotemporal dementia, says: “We attended a Discovery Day in Manchester in May 2013. During an overview presentation at the end of the day the complex legal framework for animal research was explained. The facility we visited tries at every opportunity to exceed this. I observed that the animals were cared for at far higher standards than those in agriculture and domestic settings.”
Maxine was also surprised that relatively few animals were needed: “I was struck by the small number of animals that were used for each study, yet with advances in statistics it was still possible to record data that would stand up to scrutiny.”
Others were pleased that the researchers presented even-handed information about animal research. “It was interesting to hear about not only the great advancements that can be gained by using animals in research but also the associated limitations, difficulties and ethical/moral considerations,” says David Drain, a Specialist Youth Advisor with the Scottish Huntington’s Association.
He also appreciated the opportunity to step into the ‘alternative world’ of an animal research lab.
“One of the most illuminating and fascinating parts of the day was when the group took part in the guided tour of a real-life animal research laboratory. In many ways it felt like we were going into another world as we put on our lab coats and went through the various decontamination rooms. Being able to speak to the staff who worked in the laboratory gave us an insight into their daily routines and allowed them to explain the extraordinary lengths that are taken to ensure the atmosphere and environment inside the laboratory is kept consistent and free from contaminants from the ‘outside world’,” says David.
“Regardless of your convictions what seemed clear to me is that animals will continue to play a part in developing new and effective treatments for a wide range of illnesses, and for those affected by these conditions many will feel that the end justifies the means,” he adds.
Now that the attendees have had these experiences, the next step is to equip them with the skills and confidence to talk to the media about their conditions and the use of animals in research. We’re also building a resource on our website, based on these experiences, to demonstrate how patients and carers feel and think about animal research.
We hope that this will put the often-missing patient voice at the centre of debates around animal research.
The project was funded by the MRC, the Biomedical Research Educational Trust (BRET) and the Association of the British Pharmaceutical Industry (ABPI). Discovery days were held at the University of Manchester, the University of Bath, Queen’s University Belfast, the University of Dundee, the University of Leicester and the University of Cambridge.