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Research participants’ preferences for receiving genetic risk information: a discrete choice experiment



This study aims to determine research participants’ preferences for receiving genetic risk information when participating in a scientific study that uses genome sequencing.


A discrete choice experiment questionnaire was sent to 650 research participants (response rate 60.5%). Four attributes were selected for the questionnaire: type of disease, disease penetrance probability, preventive opportunity, and effectiveness of the preventive measure. Panel mixed logit models were used to determine attribute level estimates and the heterogeneity in preferences. Relative importance of the attribute and the predicted uptake for different information scenarios were calculated from the estimates. In addition, this study estimates predicted uptake for receiving genetic risk information in different scenarios.


All characteristics influenced research participants’ willingness to receive genetic risk information. The most important characteristic was the effectiveness of the preventive opportunity. Predicted uptake ranged between 28% and 98% depending on what preventive opportunities and levels of effectiveness were presented.


Information about an effective preventive measure was most important for participants. They valued that attribute twice as much as the other attributes. Therefore, when there is an effective preventive measure, risk communication can be less concerned with the magnitude of the probability of developing disease.

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This work has been supported by a grant to the project Mind the Risk from the Swedish Foundation for Humanities and Social Sciences (grant number PR2013–0123); the European Union Seventh Framework Programme (FP7/2007–2013) under grant agreement number 305444 (RD-Connect); the Innovative Medicines Initiative project BTCure (grant agreement number 115142–1); the BioBanking and Molecular Resource Infrastructure of Sweden project, (financed by the Swedish Research Council); Euro-TEAM; BiobankCloud; and Biobanking and Biomolecular Resources Research Infrastructure (BBMRI) LPC (313010). We acknowledge support from SCAPIS funded by the Swedish Heart–Lung Foundation for providing access to their cohort.

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Correspondence to Jennifer Viberg Johansson PhD.

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  • secondary findings
  • incidental findings
  • genetic risk information
  • research participants
  • preferences for genetic risk information
Fig. 1