Biobanking

Attitudes to other types of medical research

We asked people what they thought about different types of research, some of which are seen as controversial. These included clinical trials of drugs, and research involving the use of animals and stem cells. Most were generally in favour of other types of research and felt it was important for making progress and for helping others or themselves. (See also ‘Reasons for taking part - personal benefit’ and ‘Reasons for taking part - helping medical science and other people'). 
Even though most people were strongly supportive of medical research, some concerns or doubts were also expressed, for example about the kind of topics which are seen as a priority for funding.
People with illnesses (and sometimes healthy volunteers) can be asked to take part in clinical trials, which are a valuable way to test new treatments. This can include all kinds of treatment, for example different types of surgery or rehabilitation, but most commonly people thought of clinical trials as a way of testing new drugs. In randomised controlled clinical trials, people are randomly assigned into two or more groups: those who receive a new treatment and those who receive the current standard treatment (the control group), so the results can be compared. If no standard treatment exists, people in the control group may be given a placebo (a ‘sugar pill’ with no active ingredient, that should have no effect) to test if the treatment itself is actually working. (See our section on ‘Clinical trials’ for more information). 
 
Some people we talked to with cancer or Hepatitis C had already taken part in clinical trials, and said they would be willing to do so again. However, many people expressed concerns about placebo-controlled trials and felt if they were in a trial because they were ill they would want the new drug and would not want to risk being allocated to the placebo group. (In fact in any randomised controlled trial we do not know if the new treatment is better than the existing treatment or the placebo, and it may even be harmful – see our ‘Clinical trials’). 
In the example Karen gives she is talking about healthy volunteers testing drugs to see if they can help prevent illness. This is one way in which healthy people could be involved in drug trials. For example, there have been many studies recently testing the use of low dose aspirin in otherwise healthy people to see if it helps prevent a range of conditions, including heart problems, stroke, cancer and pre-eclampsia in pregnant women. In this case, an existing, well-tested drug is being tried out for a possible new use. 
 
Another way in which healthy volunteers may become involved in drug trials is when a completely new drug is tried for the first time in human beings. This is often called a Phase 1 trial, and participants may be given a payment for taking part. Some people who had not previously been in a trial said they would probably take part if they became ill, though it would depend how ill they were and what the likely side effects might be, as well as how confident they felt that drug trials were well regulated and controlled. However, most would not be interested in taking part in a ‘first time in humans’ trial as a healthy volunteer, and several recalled the Phase 1 trial at a commercial research unit based at Northwick Park Hospital in 2006 when 6 healthy volunteers became extremely ill. (A copy of the Inquiry Report of this incident can be downloaded from the National Archives ‘Expert group on Phase One Clinical Trials’).
As Jennifer pointed out, it is rare even in Phase 1 trials for serious side effects to develop. Before any drug is tested in humans it will have been through a lot of safety testing, including studies in animals. The majority of people we talked to said they thought animals should be used in research because there was a lot to be gained from it for both human and animal medicine. However, they often stressed that researchers should take care to treat animals respectfully, and for many it was a ‘necessary evil’, which should be kept to a minimum. (For example testing beauty products on animals was unacceptable to everyone we talked to). 
There were varying levels of concern depending on the type of animal involved, for example rats compared to primates. 
Some people were more actively pro-animal research than the others. They felt animal rights campaigners exaggerated the detrimental effects of such research.
Others were against animal research, but thought it would be silly not to take drugs tested on animals that could cure illnesses. This highlighted the complexity of the issue of animal research. 
Another form of research which has caused some controversy is stem cell research, as Julie mentions. Stem cells are important because they have the ability to become different cell types, and scientists are working on developing ways to use stem cells to repair damaged organs or tissues. It is anticipated this could lead to treatment for many conditions such as Parkinson’s disease and Alzheimer’s. Scientists also say that by studying stem cells they will learn more about how cells work and can use this knowledge for drugs testing and development. The University of Edinburgh and the Medical Research Council also offer useful information about stem cell research (see 'Resources' section).
 
Stem cell research may involve cells taken from adults and children (for example from bone marrow or skin), from embryos donated by couples undergoing IVF, from umbilical cord blood, the placenta or aborted fetuses. The controversies surrounding stem cell research were reflected in what the people we spoke to said.
 
Some thought it was worthwhile and were interested to see what contribution it may make in the future. Others thought there were moral issues that needed to be resolved. 
Not all stem cell research involves embryos or fetuses, and alternative ways of collecting stem cells can avoid many of the moral difficulties.
Jean also pointed out that stem cell research could reduce the need for us to use animal testing.
We also asked people what their thoughts were on how the media affect research. Many said that the media favour dramatic or sensational stories and often misrepresent research findings. 
People felt that the media should present information more ethically, especially because they have the power to influence people’s views. Everyone felt it was important to expose cases such as the pathologist at Alder Hey children’s hospital who had been retaining organs without consent after post mortems in the 1980s and 1990s. But some people worried that the reporting could be inflammatory and cause unnecessary damage. 
However, some felt that the media can act as a force for good as they raise awareness about illnesses. 
Chris noted that she hardly ever sees positive stories about research in the local media and would like to see more.

Last reviewed February 2016.
Last updated February 2016.

Feedback

Please use the form below to tell us what you think of the site. We’d love to hear about how we’ve helped you, how we could improve or if you have found something that’s broken on the site.

Make a Donation to healthtalk.org





Find out more about how you can help us.

Send to a friend

Simply fill out this form and we'll send them an email