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Opt-out plus, the patients'choice: preferences of cancer patients concerning information and consent regimen for future research with biological samples archived in the context of treatment
  1. Eric Vermeulen (e.vermeulen{at}nki.nl)
  1. Netherlands Cancer Institute, Netherlands
    1. Marjanka K. Schmidt (mk.schmidt{at}nki.nl)
    1. Netherlands Cancer Institute, Netherlands
      1. Neil K. Aaronson (n.aaronson{at}nki.nl)
      1. Netherlands Cancer Institute, Netherlands
        1. Marianne Kuenen (m.kuenen{at}nki.nl)
        1. Netherlands Cancer Institute, Netherlands
          1. Paul Van der Valk (p.vandervalk{at}vumc.nl)
          1. Vrije Universiteit Medical Centre, Netherlands
            1. Colin Sietses (sietsesc{at}zgv.nl)
            1. Ziekenhuizen Gelderse Vallei, Netherlands
              1. Petrousjka M.P. Van den Tol (mp.vandentol{at}vumc.nl)
              1. Vrije Universiteit Medical Centre, Netherlands
                1. Flora E. Van Leeuwen (f.v.leeuwen{at}nki.nl)
                1. Netherlands Cancer Institute, Netherlands

                  Abstract

                  Aims: The aims of this study were to determine: (1) which consent procedures patients prefer for future medical research with tissue stored following surgery; (2) the percentage of patients who choose not to provide consent for research with their stored tissue; (3) the reasons given for denying such tissue use.

                  Methods: Patients (n = 103) from the Vrije Universiteit Medical Centre, an academic hospital in the Netherlands, who had recently undergone surgery for breast or colorectal cancer were mailed a questionnaire about preferences for consent regimens.

                  Results: Seventy-six patients (74%) completed the questionnaire.

                  Only two patients (3%) choose not to provide consent for research with their stored tissue.

                  The majority of patients (60%) preferred an "opt-out plus" procedure that included receiving active, verbal information to "one-time general consent" (11%) or to an "opt-out" procedure without verbal notification (5%). Only 3% indicated a wish to be asked for consent for each new research project and 21% did not know what they preferred or had no preference.

                  There were no significant associations observed between preference for the various consent regimens and age, sex, educational level or personal sense of ownership of the stored tissue.

                  Conclusion: Patients prefer an "opt-out plus" procedure that includes the provision of explicit, verbal and written information. Less than 5% of patients decline to consent to the use of their stored tissue for research purposes.

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