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Meulenkamp, T.M.; Gevers, S.K.; Bovenberg, J.A.; Koppelman, G.H.; Vlieg, A.V.; Smets, E.M.A. (2010)

Communication of Biobanks' Research Results: What Do (Potential) Participants Want?

Article / Letter to editor
The aim of this study was to investigate (potential) research participants' (a) information preferences with regard to receiving biobanks' genetic research results, and (b) attitudes towards the duties of researchers to communicate research results. A total group of 1,678 was analyzed, consisting of a sample of the general Dutch population (N = 1,163) and patients with asthma, rhinitis, and thrombosis (N = 515) who completed a survey including six fictitious genetic research results each presented as aggregate and individual result, varied for treatability and kind of disease. Five questions assessed attitudes towards researchers' duties to communicate research results. Additionally, background characteristics were measured. A majority of the respondents wanted to receive aggregate results as well as individual results. A small majority (59%) held the view that researchers should communicate individual results with no health consequences. One third agreed with an information duty...Show moreThe aim of this study was to investigate (potential) research participants' (a) information preferences with regard to receiving biobanks' genetic research results, and (b) attitudes towards the duties of researchers to communicate research results. A total group of 1,678 was analyzed, consisting of a sample of the general Dutch population (N = 1,163) and patients with asthma, rhinitis, and thrombosis (N = 515) who completed a survey including six fictitious genetic research results each presented as aggregate and individual result, varied for treatability and kind of disease. Five questions assessed attitudes towards researchers' duties to communicate research results. Additionally, background characteristics were measured. A majority of the respondents wanted to receive aggregate results as well as individual results. A small majority (59%) held the view that researchers should communicate individual results with no health consequences. One third agreed with an information duty only when treatment is available. A preference for individual results and an attitude in favor of communicating results were both associated with belonging to the general Dutch population rather than being a patient, wanting to learn about own health as the reason for biobank-participation, a monitoring coping style, a general desire for health information, perceived meaningfulness of genetic information and no anticipated anxiousness. A sizable majority of respondents showed a high information preference for individual results, even when it is unclear that treatment is available. Fewer were of the opinion that researchers should make this possible. For their communication policy biobanks should take notice of (potential) participants' high information preferences and expectations. (C) 2010 Wiley-Liss, Inc.Show less
information preference biobank disclosing results medical situations inventory genetic research informed-consent clinical-trial venous thrombosis risk information cancer-patients population asthma return
All authors
Meulenkamp, T.M.; Gevers, S.K.; Bovenberg, J.A.; Koppelman, G.H.; Vlieg, A.V.; Smets, E.M.A.
Date
2010-10-31
Journal
American Journal of Medical Genetics Part A
Volume
152A
Issue
10
Pages
2482 - 2492
DOI
doi:10.1002/ajmg.a.33617