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Patients' Attitudes Towards the Return of Incidental Findings After Research with Residual Tissue: A Mixed Methods
Eric Vermeulen1,2, Susanne Rebers1,3, Neil K Aaronson1
11 Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute , Amsterdam, the Netherlands .
Aims:
To investigate the attitudes of patients toward the return of individual research results from scientific research with residual tissue.
Methods And Findings:
We recruited 1319 patients from 6 Dutch hospitals. In total, 673 patients (51% response rate) completed the questionnaire and 146 were interviewed. Based on the questionnaire data, the majority of respondents (92%) wanted to be informed of incidental findings about both a curable (92%) and an incurable (76%) disease. Respondents' wishes to be informed about incidental findings did not vary significantly as a function of patient demographics or type of disease. The interview data show that respondents wished to be informed about incidental findings because they considered it to be normal practice; they expected the information to be of benefit for their health. Information should be provided by their physician. Yet, most respondents (84%) would consent to research even if they would not be informed about incidental findings, primarily because they recognized that there might be practical problems in providing such information, and because they valued scientific research highly.
Conclusions:
We conclude that, while the majority of patients want to be informed about incidental findings, they also recognize that this may be difficult.