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Connective tissue: Cancer patients’ attitudes towards medical research using excised (tumour) tissue

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Abstract

The objective of this article is to explore the views of Dutch cancer patients on the use of excised and stored (tumor) tissues in medical research. Excised tissues are routinely stored in hospitals for future diagnostic use. They are also important for scientific research. This article discusses and interprets concepts of ‘ownership’ in the context of the increasing scientific and commercial value of tissues. We used a mixed-methods design combining quantitative data (questionnaires) with qualitative data (interviews) and observations during an intervention study. Our analysis suggests that, for patients, the stored tissue is a hypercollective good that should remain in the public sphere in order to facilitate research. The tissue is seen as connecting the donor to relatives and other patients, the hospital, and to the larger scientific community. The respondents expressed a preference for an ongoing relationship with the tissue custodian. A substantial minority of respondents consider themselves to be owners of the tissue. Notably, tumour tissue is perceived as unique and special. Patients endorse the use of extracorporeal tissue removed during medical care in scientific research. They expect reciprocity from the tissue custodian in the form of information about findings.

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Acknowledgements

We are grateful to the Cancer Genomics Centre for funding this research. MKS is funded by the Dutch Cancer Society (grant number DCS-NKI 2009-4363). We are also grateful to M. de Regt, M. von Faber and C. van El for comments on an earlier draft of this article.

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Authors and Affiliations

  1. VU University Medical Center, Clinical Genetics & EMGO Institute for Health and Care Research, Amsterdam, The Netherlands

    Eric Vermeulen & Martina C Cornel

  2. Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute – Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands

    Marjanka K Schmidt & Flora E van Leeuwen

  3. Department of Human Genetics, Faculty of Medicine, McGill University, Centre of Genomics and Policy, Montreal, Quebec,, Canada

    Bartha Maria Knoppers

  4. Department of Psychosocial Research, Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute – Antoni van Leeuwenhoek Hospital, Head, The Netherlands

    Neil K Aaronson

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  1. Eric Vermeulen
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  4. Bartha Maria Knoppers
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  5. Flora E van Leeuwen
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Correspondence to Neil K Aaronson.

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Vermeulen, E., Schmidt, M., Cornel, M. et al. Connective tissue: Cancer patients’ attitudes towards medical research using excised (tumour) tissue. BioSocieties 6, 466–486 (2011). https://doi.org/10.1057/biosoc.2011.9

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