Opinions of UK patients required for Wellcome Trust guidelines

The Wellcome Trust is putting together guidelines for researchers regarding reporting health related findings to research participants. They would particularly like the opinion of patients and patient organisations based in the UK. More information about this project and how to have you say can be found below. A copy of the guidelines can be found here. Please send your comments to Dr Beth Thompson (b.thompson@wellcome.ac.uk) by this Friday (26th April).


Your chance to have a say on the draft Wellcome Trust and Medical Research Council framework on health-related findings in research

During a study involving human participants, researchers may make a finding that is relevant to an individual’s health. For example, an MRI scan may reveal an abnormality that looks like a tumour or genetic analysis may reveal that the participant is at high risk of developing breast cancer. There is an intense ethical debate on whether and how these findings should be fed back to the participant.

In the absence of general UK-wide guidelines for researchers and clear ethical consensus on how these health-related findings should be handled, the Wellcome Trust and Medical Research Council have drafted a framework to support researchers’ decisions about individual feedback.

We would now like your help to ensure that the framework reflects the perspective of patients and the public. We are interested to receive your comments on the draft framework (attached) from the patient and public perspective.

Feedback should be sent to Beth Thompson at b.thompson@wellcome.ac.uk by 26 April.

Any patient and public perspectives are welcome, but the following questions may guide your comments:

1)   Do you agree with the proposed requirements for researchers outlined in section B.8?

2)  Does the framework sufficiently reflect the research participant’s perspective? If not, how could this be improved?

3)  Is the framework clear? Do any elements need to be strengthened or removed?

Please get in touch if you have any questions and thank you for considering this.

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