Plain language summaries of research

This is a plain language summary of an original research article. The views expressed are those of the author(s) and reviewer(s) at the time of publication.

Why are organs used for research?

Every year in the UK, many organs are donated but cannot be used for transplantation. These organs could be valuable for medical research, particularly to help scientists understand diseases and develop new treatments. In practice, very few are used in this way. For example, between 2008 and 2023, only 18 donated hearts out of 6,000 potential donors were used in research.

In addition to this, organs that are removed from people when they are receiving a transplant can also be used in research.

It is important to understand how the people most affected by organ donation and transplantation feel about the use of donated organs in medical research. There has been very little research looking at this previously, so researchers from the Royal Papworth Hospital and the University of Cambridge set out to address this gap, specifically looking at donated hearts.

 

About the research

Four workshops were held across the UK between February and September 2024. 70 people took part in total including:

• Family members of organ donors
• Transplant recipients
• People with heart failure
• Family members of transplant recipients and people with heart failure

Each workshop began with talks about transplantation, heart regeneration (the process of repairing or regrowing damaged heart tissue), and the ways in which donated organs can be used in research.

After the talks, participants split into small groups to discuss their thoughts and feelings while being guided by a facilitator. They then came back together into one group to share their thoughts.

Before and after each workshop, participants were asked to complete a questionnaire about their views.

 

What did participants think about using donated organs for research?

Overall, participants were strongly in favour of using hearts that cannot be transplanted and hearts that are removed from transplant recipients for medical research.

Many transplant recipients said they wanted to give something back to the National Health Service (NHS) and to society after receiving a life-saving transplant. Several people had assumed their removed heart would have been used in research, and were surprised to discover this was often not the case.

Families of organ donors felt that, if their loved one's organ could not save a life through transplantation, then using it to help advance medical research was a meaningful alternative. Several described this as a way of honouring their loved one's legacy.

 

Concerns about using donated organs for research

While participants generally had positive views about using donated organs for research, they expressed the following concerns:

Communication must be handled carefully: Donor families highlighted that they are generally in a state of grief when being asked about organ donation. They stressed that any conversations about donating organs for research must be sensitive, compassionate, and not feel too clinical. As one person stated, "the humanity needs to be involved in that context as well".

Donation for research must not be confused with donation for transplantation: Several participants worried that introducing the topic of donation for research at the same time as donation for transplantation could cause confusion. They felt this might lead some families to refuse organ donation altogether, and that transplantation should always be the priority.

People want to know what happens to donated organs: Both donor families and transplant recipients expressed a strong wish to receive updates about how donated organs were used in research. Some recipients said they had donated their removed heart for research but never heard anything further, and found this difficult. One person stated, "I donated my organ to research - I wish I had heard what happened to it, I regret not knowing something".

Clear consent processes are essential: Participants felt that asking for consent to use organs for research should be a separate, clearly explained part of the donation conversation. They suggested that specialist nurses or doctors with specific training are best placed to have these conversations.

 

How can the current system be improved?

Attendees at the workshops suggested the following ideas to improve the current system:

• Updating the NHS Organ Donor Register to allow people to record their wishes about both organ donation for research and organ donation for transplantation
• Using the NHS app and social media to raise public awareness about organ donation for research
• Providing families of organ donors and transplant recipients with ongoing information about how their donated organ supported research
• Ensuring that any formal system includes communication with people from different cultural, religious, and social backgrounds

 

What does this research tell us?

People with lived experience of organ donation and transplantation broadly support using donated organs that cannot be transplanted for medical research. However, getting this right required careful communication, a clear and considerate consent process, and a commitment to keeping donors and their families informed.

 

Limitations of the study

This study only included people who already have personal experience of organ donation and transplantation, and people who chose to attend the workshops may have had more positive views on organ donation than those who did not attend. This means that the results may not reflect the views of the general public, and future research should look at views from a broader range of people.

 

Future work

One of the key takeaways from these workshops was the need for a continued dialogue between members of the public and academics and clinicians in this field. The team are now planning a further public engagement day to be held in the Francis Crick Institute on the evening of 10th September from 6-9pm. More details will follow, but we encourage people to attend if they are interested in having their voice heard.

Read the full article

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Funding 

This research was funded in part by the Wellcome Trust, the UKRI Medical Research Council, the Cambridge University Public Engagement Fund and Cambridge Cardiovascular. JOL is supported by a grant from the Kusuma Charitable Trust.

Read the original article

This is a summary of: Louca JO, Asemota N, Thren J, et al. Organ donation for research purposes: a qualitative focus group study on the views of donor families, transplant recipients and heart failure patients in the UK. BMJ Open 2025;15:e107992. doi:10.1136/ bmjopen-2025-107992