Lay Perspectives on Receiving Different Types of Genomic Secondary Findings : a Qualitative Vignette Study

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http://hdl.handle.net/10138/304625

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Vornanen , M , Aktan-Collan , K , Hallowell , N , Konttinen , H & Haukkala , A 2019 , ' Lay Perspectives on Receiving Different Types of Genomic Secondary Findings : a Qualitative Vignette Study ' , Journal of Genetic Counseling , vol. 28 , no. 2 , pp. 343-354 . https://doi.org/10.1007/s10897-018-0288-7

Title: Lay Perspectives on Receiving Different Types of Genomic Secondary Findings : a Qualitative Vignette Study
Author: Vornanen, Marleena; Aktan-Collan, Katja; Hallowell, Nina; Konttinen, Hanna; Haukkala, Ari
Contributor: University of Helsinki, Research group of Ari Haukkala
University of Helsinki, Research group of Ari Haukkala
University of Helsinki, Social Psychology
University of Helsinki, Academic Disciplines of the Faculty of Social Sciences
Date: 2019-04
Language: eng
Number of pages: 12
Belongs to series: Journal of Genetic Counseling
ISSN: 1059-7700
URI: http://hdl.handle.net/10138/304625
Abstract: Genome-wide sequencing may generate secondary findings (SFs). It is recommended that validated, clinically actionable SFs are reported back to patients/research participants. To explore publics’ perspectives on the best ways to do this, we performed a vignette study among Finnish adults. Our aim was to explore how lay people react to different types of hypothetical genomic SFs. Participants received a hypothetical letter revealing a SF predisposing to a severe but actionable disease - cardiovascular disease (familial hypercholesterolemia, long QT syndrome) or cancer (Lynch syndrome, Li–Fraumeni syndrome). Participants (N=29) wrote down their initial reactions, and discussed (N=23) these in focus groups. Data were analyzed using inductive thematic analysis. Reactions to hypothetical SFs varied according to perceived severity and familiarity of the diseases. SFs for cancer were perceived as more threatening than for cardiovascular diseases, but less distressing than risk for psychiatric or neurological disorders, which participants spontaneously brought up. Illness severity in terms of lived experience, availability of treatment, stigma, and individual’s responsibility to control risk were perceived to vary across these disease types. In addition to clinical validity and utility, SF reporting practices need to take into account potential familiarity and lay illness representations of different diseases. Illness representations may influence willingness to receive SFs, and individuals’ reactions to this information.
Subject: 3142 Public health care science, environmental and occupational health
5144 Social psychology
Whole genome sequencing
Incidental findings
Secondary findings
Familial hypercholesterolemia
Long QT syndrome
Lynch syndrome
Li-Fraumeni syndrome
Public perspective
Illness representations
Qualitative vignette study
INCIDENTAL FINDINGS
RETURN
RECOMMENDATIONS
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