Results of the Inquiry and Citation Review
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From October 7, 2004 until January 31, 2005, we invited scientists registered in the NuGO network by a personal email to participate in an online inquiry about their experiences with ethical approval for studies that they had been conducted or currently conducting. Of the 640 scientists eligible, 551 informed us that they were not involved in ethical approval or do not work with human studies; only 2 answered that they are not willing to fill in the questionnaire and 26 (4%) did not respond at all until the end of the inquiry. During the period of inquiry, we emailed 3 reminders: 8 November 2004, 29 November 2004 and 5 January 2005. Finally, 61 scientists filled in the electronic questionnaire. Of those, 32 were responsible for obtaining ethical approval and 29 contributed to the applications. About one third reported that their Ethics Committee were affiliated with a hospital; one fourth with a hospital/university, and 21% with an university. Only about 8% had to apply to Governmental Ethics Committees. In appendix 3a and 3b the Ethics Committees reported by the scientists and the legislation these committees are referring to are listed.
The online questionnaire was organized in 6 parts, 2 parts with general questions and 4 parts dealing with the four issues identified important: genotype information, biobanks, exchange of data and samples, and informed consent. The frequency of interpretable answers varied across the four issues being the lowest for exchange of data and samples (12 answers) and biobanks (14 answers) and higher for genotype (27 answers) and highest for informed consent (33 answers).