Organ donation for research: the donor family perspective
When a person's organs are donated, some of their organs may not be suitable for transplantation. In this case, the organs can be used in medical research if consent is provided by the donor's family. This type of research can look at causes and treatments for certain diseases, test new ways of making more donated organs suitable for transplant, and improve outcomes for future patients.
The UK Organ Donation and Transplantation Research Network (UKODTRN) and the Donor Family Network wanted to understand the reasons why family members of potential organ and tissue donors may say yes or no to donation for research. We shared a survey asking donor families about their views and experiences.
Some family members who did not consent to donation for research said they didn't fully understand what would happen to the donor's organs, and others saw less immediate personal benefit from research than transplantation.
When they say research it sounds like science but with donation to a person it feels more personal
Most respondents reported feeling positive about the use of organs and tissue for research, however many had little or no knowledge about the ways donated organs or tissues are used and the potential benefits of such research.
We also asked donor families how communication could be improved with others going through the difficult process of organ donation. Some suggested that research should be better communicated with families of potential donors by referencing examples of specific studies and discussing the potential benefits. Others suggested there should be more public awareness and education about the benefits of organ or tissue donation for research, so families are already aware of this topic when faced with the decision.
we were aware of organ donation but we had no knowledge at all about donation for research I think it still feels like a taboo subject that people don't understand so they don't think about it or discuss it. Education is the way forward
We will be sharing more detailed results from this survey at a later date.