Biobanking

Getting feedback

During research projects, participants may get two types of feedback. They may receive information about their personal health and/or wider information about the results of the whole study. Practice varies across different types of medical research, but participants should be told whether they can expect to see any results as part of the information they are given when they first decide whether to take part. Being a healthy volunteer can bring benefits to an individual aside from a sense of altruism, whilst for those whose disease is being researched, there is satisfaction in contributing to increasing knowledge of their condition. (Please also see ‘Reasons for taking part in biobanking research - personal benefit’).
 
Own health
Participants in the UK Biobank and some other projects for healthy volunteers will be given a print-out of their personal health measurements and the people we spoke to who received this found it useful and interesting. They were reassured to think that if any problems were picked up they could be referred back to their GP and this was seen as a positive benefit to taking part in the research.
People also thought it a huge bonus that they were able to see pictures of their internal organs during the research or as part of the feedback. For example, Ian was sent pictures of his brain after a Motor Neurone Disease study and during a scan Chris was able to see her heart beating.
Some people felt that their test results were inaccurate, but were able to check them again with their GP. Others thought that problems with the equipment meant that they would not get accurate results.
Although medical tests that are part of research studies can give you feedback about your health, it is important to remember that they are not full health checks and should not be substituted for visiting your GP if you have health concerns.
Researchers should be aware that people can be sensitive about certain types of information, such as weight or body mass index. 
The results of tests conducted as part research studies can have particular significance for people who are ill, for example in helping them monitor their condition. However, there can sometimes be negative consequences too, as Jean explains in the clip below. 
Wider study results
There were mixed views about wanting to know the results of any research carried out using the samples donated. Most people said it would be fascinating, although a few said they were not really interested. 
As Gareth points out it often takes a long time for research results to become available, even when samples are initially collected for a specific study. Research based on samples stored in biobanks may continue years into the future and we cannot predict at the outset what kinds of research will prove useful. Some people felt it was impractical or not worth spending money on sending results years later to people, even if it might be of interest. 
For this reason some said they were happy to make an effort to look online themselves to check how research using their samples is developing. 
David remembered being told that he definitely wouldn’t receive any information on the findings of research using his samples. But in some cases people did not know whether to expect results or not.
Some people felt that hearing about progress with the research might be more important for people who are ill than for healthy volunteers. 
Like Chris above, several people had not thought before about whether they felt researchers had a duty to send out their findings to participants, but when asked they thought it sounded like a good idea. Others held stronger views that it was important, as a way of acknowledging people’s contribution and possibly encouraging them to take part another time, particularly when they had contributed samples to a specific study.
For some people getting the results encourages them to take part in other studies. As Roland said, “I would carry on anyway even if such encouraging words weren’t said. But it obviously inspires one to carry on with the research”.
 
People who were told what a difference their contribution was already making were delighted to hear about the progress made.
If people do get sent results it is important they are understandable. Some people said they had been sent information that was complicated and difficult to understand. Others who had not yet received feedback thought they might have problems understanding it. 


​Last reviewed February 2016.


 

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