The UK Organ Donation and Transplantation Research Network C.I.C. (UKODTRN), in collaboration with the Donor Family Network, recently conducted a survey to better understand donor family perspectives on the use of organs and tissues for research. Responses from over 200 donor family members highlight generally positive attitudes towards research, particularly when it is conducted for not-for-profit purposes. However, the findings also reveal important gaps in communication and understanding: more than a third of respondents did not recall being asked about research at the time of donation, and many reported limited or negligible knowledge of how donated organs or tissues might be used in research. While most families expressed support, views were more mixed when research involved commercial or for-profit contexts, underscoring the importance of transparency and trust.
For researchers using QUOD Biobank tissue samples, these findings carry important implications. They reinforce the need to respect and reflect donor family expectations by ensuring clarity about how samples are used, particularly around the purpose and potential beneficiaries of research. There is a clear opportunity—and responsibility—to improve donor family involvement in research studies and also donor family-facing communication about the value and impact of research using donated material. Demonstrating tangible benefits, maintaining openness about partnerships (including with industry), and embedding donor family perspectives into research governance will be key to sustaining trust. Ultimately, aligning research practice with donor family values not only honours their contribution but also strengthens the ethical foundation and public support for initiatives like QUOD Biobank.
Karen Rockell (UKODTRN) and Sue Burton (Donor Family Network)
Plain language summaries of QUOD research studies
QUOD Biobank has continued to support work to improve public understanding of the research it enables by contributing to the development of plain language summaries for research projects. Led by the UKODTRN, this initiative aims to make research more accessible by providing clear, jargon-free descriptions of study objectives and potential impact. By helping to improve transparency and communication with donor families, transplant patients and the wider public, this work supports QUOD Biobank’s commitment to meaningful public engagement and demonstrates the value of the samples and data entrusted to research.
You can find four plain language summaries covering a range of projects facilitated by QUOD on our website.