“I would like to discuss it further with an expert” : a focus group study of Finnish adults’ perspectives on genetic secondary findings

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http://hdl.handle.net/10138/298235

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Vornanen , M E , Aktan-Collan , K I , Hallowell , N , Konttinen , H M , Kääriäinen , H & Haukkala , A H 2018 , ' “I would like to discuss it further with an expert” : a focus group study of Finnish adults’ perspectives on genetic secondary findings ' , Journal of Community Genetics , vol. 9 , no. 3 , pp. 305–314 . https://doi.org/10.1007/s12687-018-0356-6

Title: “I would like to discuss it further with an expert” : a focus group study of Finnish adults’ perspectives on genetic secondary findings
Author: Vornanen, Marleena Emilia; Aktan-Collan, Katja Irmeli; Hallowell, Nina; Konttinen, Hanna Marja; Kääriäinen, Helena; Haukkala, Ari Heikki
Contributor: University of Helsinki, Department of Social Research (2010-2017)
University of Helsinki, Department of Social Research (2010-2017)
University of Helsinki, Department of Food and Nutrition
University of Helsinki, Center for Population, Health and Society
Date: 2018-07
Language: eng
Number of pages: 10
Belongs to series: Journal of Community Genetics
ISSN: 1868-310X
URI: http://hdl.handle.net/10138/298235
Abstract: Lowered costs of genomic sequencing facilitate analyzing large segments of genetic data. Ethical debate has focused on whether and what kind of incidental or secondary findings (SFs) to report, and how to obtain valid informed consent. However, people’s support needs after receiving SFs have received less attention. We explored Finnish adults’ perspectives on reporting genetic SFs. In this qualitative study which included four focus group discussions (N = 23) we used four vignette letters, each reporting a genetic SF predisposing to a different disease: familial hypercholesterolemia, long QT syndrome, Lynch syndrome, and Li-Fraumeni syndrome. Transcribed focus group discussions were analyzed using inductive thematic analysis. Major themes were immediate shock, dealing with worry and heightened risk, fear of being left alone to deal with SFs, disclosing to family, and identified support needs. Despite their willingness to receive SFs, participants were concerned about being left alone to deal with them. Empathetic expert support and timely access to preventive care were seen as essential to coping with shock and worry, and disclosing SFs to family. Discussion around SFs needs to concern not only which findings to report, but also how healthcare systems need to prepare for providing timely access to preventive care and support for individuals and families.
Subject: 1184 Genetics, developmental biology, physiology
5144 Social psychology
INCIDENTAL FINDINGS
SECONDARY FINDINGS
WHOLE GENOME SEQUENCING
PUBLIC PERSPECTIVE
FOCUS GROUP
QUALITATIVE VIGNETTE STUDY
RESEARCH PARTICIPANTS
BREAST-CANCER
HEALTH-CARE
RETURN
INFORMATION
COMMUNICATION
RISK
PREFERENCES
FAMILIES
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