Amanda Hunn, Joint Head of Policy at the HRA
Studies involving human tissue can improve our understanding of health and disease, and ultimately lead to improved healthcare.
But evidence supplied by the UKCRC Tissue Directory and Coordination Centre suggests some tissue in banks goes unused by researchers because it is not adequately linked to patient data or not linked to future health data.
With that in mind, I’ve been part of a team looking to learn more about what the public view is on better linking patient data to donated tissue.
We’re running public workshops looking at aspects including:
- The public’s awareness of the importance of tissue being accompanied by patient data
- What reassurances the public may need to provide their consent for data to be linked to donated tissue
- When tissue becomes data
- When consent for tissue for research and clinical care is combined
- Electronic dynamic consent, which would allow an ongoing dialogue between the researchers and the donor
The work is being part funded by Sciencewise (part of the Department for Business, Energy and Industrial Strategy) and is supported by the Medical Research Council, Wellcome and Genomics England.
The dialogue includes clinical researchers and other experts, such as patients with experience of donating tissue attending the workshops to offer their views. If you would be interested in volunteering your time to be part of this work, please get in touch with me.
A report on the results is scheduled to be published early next year. We expect the report will inform joint guidance on the topic, to be consulted on in 2018.