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

Johansson, Jennifer Viberg; Langenskiöld, Sophie; Segerdahl, Pär; Hansson, Mats; Hösterey, U.; Gummesson, Anders; Veldwijk, Jorien

doi:10.1038/s41436-019-0511-4

Cited by 22 publications

(21 citation statements)

References 37 publications

(59 reference statements)

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“…Yet, a US-based study of 311 mostly healthy volunteers, referred to as the ClinSeq study, indicated that interest was highest for receiving results for treatable/preventable conditions and carrier status [ 5 ]. This accords with other studies where respondents have been most interested in receiving information about genes that are life-threatening or may increase their risks for future health problems, where preventable options are available, or that are likely to change their doctor’s approach to their care [ 3 , 40 ]. Yet desires for information persist for some participants, both with and without existing medical conditions, even when options for return of information include diseases without known prevention, treatment, or other actionability, and genes with uncertain significance [ 3 , 5 , 66 , 67 ].…”

Section: Views On Return Of Study-specific Resultssupporting

confidence: 65%

“…Likewise, in a study of 241 persons with mental disorders, 95% wanted ‘pertinent’ findings to be made available [ 13 ]. Studies have shown that participants without an existing health condition are highly interested in receiving all categories of results [ 5 ] and generally prefer ‘knowing’ to ‘not knowing’ [ 40 ]. Yet, a US-based study of 311 mostly healthy volunteers, referred to as the ClinSeq study, indicated that interest was highest for receiving results for treatable/preventable conditions and carrier status [ 5 ].…”

Section: Views On Return Of Study-specific Resultsmentioning

confidence: 99%

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Return of individual research results from genomic research: A systematic review of stakeholder perspectives

et al. 2021

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Despite the plethora of empirical studies conducted to date, debate continues about whether and to what extent results should be returned to participants of genomic research. We aimed to systematically review the empirical literature exploring stakeholders’ perspectives on return of individual research results (IRR) from genomic research. We examined preferences for receiving or willingness to return IRR, and experiences with either receiving or returning them. The systematic searches were conducted across five major databases in August 2018 and repeated in April 2020, and included studies reporting findings from primary research regardless of method (quantitative, qualitative, mixed). Articles that related to the clinical setting were excluded. Our search identified 221 articles that met our search criteria. This included 118 quantitative, 69 qualitative and 34 mixed methods studies. These articles included a total number of 118,874 stakeholders with research participants (85,270/72%) and members of the general public (40,967/35%) being the largest groups represented. The articles spanned at least 22 different countries with most (144/65%) being from the USA. Most (76%) discussed clinical research projects, rather than biobanks. More than half (58%) gauged views that were hypothetical. We found overwhelming evidence of high interest in return of IRR from potential and actual genomic research participants. There is also a general willingness to provide such results by researchers and health professionals, although they tend to adopt a more cautious stance. While all results are desired to some degree, those that have the potential to change clinical management are generally prioritized by all stakeholders. Professional stakeholders appear more willing to return results that are reliable and clinically relevant than those that are less reliable and lack clinical relevance. The lack of evidence for significant enduring psychological harm and the clear benefits to some research participants suggest that researchers should be returning actionable IRRs to participants.

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Section: Views On Return Of Study-specific Resultssupporting

confidence: 65%

Section: Views On Return Of Study-specific Resultsmentioning

confidence: 99%

Return of individual research results from genomic research: A systematic review of stakeholder perspectives

et al. 2021

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“…The DCE method is increasingly used in health care fields to quantify the preferences of specific target populations concerning any health-related product or service [ 18 - 20 ]. In a DCE, respondents are asked to complete several choice tasks .…”

Section: Methodsmentioning

confidence: 99%

Preferences of the Public for Sharing Health Data: Discrete Choice Experiment

Johansson¹,

Bentzen²,

Shah³

et al. 2021

JMIR Med Inform

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Background Digital technological development in the last 20 years has led to significant growth in digital collection, use, and sharing of health data. To maintain public trust in the digital society and to enable acceptable policy-making in the future, it is important to investigate people’s preferences for sharing digital health data. Objective The aim of this study is to elicit the preferences of the public in different Northern European countries (the United Kingdom, Norway, Iceland, and Sweden) for sharing health information in different contexts. Methods Respondents in this discrete choice experiment completed several choice tasks, in which they were asked if data sharing in the described hypothetical situation was acceptable to them. Latent class logistic regression models were used to determine attribute-level estimates and heterogeneity in preferences. We calculated the relative importance of the attributes and the predicted acceptability for different contexts in which the data were shared from the estimates. Results In the final analysis, we used 37.83% (1967/5199) questionnaires. All attributes influenced the respondents’ willingness to share health information (P<.001). The most important attribute was whether the respondents were informed about their data being shared. The possibility of opting out from sharing data was preferred over the opportunity to consent (opt-in). Four classes were identified in the latent class model, and the average probabilities of belonging were 27% for class 1, 32% for class 2, 23% for class 3, and 18% for class 4. The uptake probability varied between 14% and 85%, depending on the least to most preferred combination of levels. Conclusions Respondents from different countries have different preferences for sharing their health data regarding the value of a review process and the reason for their new use. Offering respondents information about the use of their data and the possibility to opt out is the most preferred governance mechanism.

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“…A DCE measuring research participants' preferences to receive secondary findings of a genetic test was used as a case for this study. 24 Although such decisions are considered highly complicated, 21,25,26 this makes it an interesting case for this study. A total of 1300 participants of the Swedish CArdioPulmonary bioImage Study (SCAPIS) 27 were selected to receive the DCE questionnaire.…”

Section: Dce Case Study and Participant Recruitmentmentioning

confidence: 99%

“…Finally, 4 attributes were selected for this DCE (Table 1). A more detailed description of the attribute selection process is described in Viberg Johansson et al 24 Experimental Design and Pilot Testing NGene 1.0 (ChoiceMetrics, 2011) software was used to construct a Bayesian D-efficient design. 9,36 The design of the pilot DCE was constructed using priors indicating the direction (ie, positive or negative) of the included attribute-level estimates.…”

Section: Attributes Levels and Choice Task Presentationmentioning

confidence: 99%

Mimicking Real-Life Decision Making in Health: Allowing Respondents Time to Think in a Discrete Choice Experiment

et al. 2020

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To empirically test the impact of allowing respondents time to think (TTT) about their choice options on the outcomes of a discrete choice experiments (DCE). Methods: In total, 613 participants of the Swedish CArdioPulmonary bioImage Study (SCAPIS) completed a DCE questionnaire that measured their preferences for receiving secondary findings of a genetic test. A Bayesian D-efficient design with 60 choice tasks divided over 4 questionnaires was used. Each choice task contained 2 scenarios with 4 attributes: type of disease, disease penetrance probability, preventive opportunities, and effectiveness of prevention. Respondents were randomly allocated to the TTT or no TTT (NTTT) sample. Latent class models (LCMs) were estimated to determine attribute-level values and their relative importance. In addition, choice certainty, attribute-level interpretation, choice consistency, and potential uptake rates were compared between samples. Results: In the TTT sample, 92% of the respondents (245 of 267) indicated they used the TTT period to (1) read the information they received (72%) and (2) discuss with their family (24%). In both samples, respondents were very certain about their choices. A 3-class LCM was fitted for both samples. Preference reversals were found for 3 of the 4 attributes in one class in the NTTT sample (34% class-membership probability). Relative importance scores of the attributes differed between the 2 samples, and significant scale effects indicating higher choice consistency in TTT sample were found. Conclusions: Offering respondents TTT influences decision making and preferences. Developers of future DCEs regarding complex health-related decisions are advised to consider this approach to enhance the validity of the elicited preferences.

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

Cited by 22 publications

References 37 publications

Return of individual research results from genomic research: A systematic review of stakeholder perspectives

Return of individual research results from genomic research: A systematic review of stakeholder perspectives

Preferences of the Public for Sharing Health Data: Discrete Choice Experiment

Mimicking Real-Life Decision Making in Health: Allowing Respondents Time to Think in a Discrete Choice Experiment

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