Attitudes towards genetic testing and information: does parenthood shape the views?
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ORIGINAL ARTICLE
Attitudes towards genetic testing and information: does parenthood shape the views? Antti Saastamoinen 1 & Virva Hyttinen 2,3 & Mika Kortelainen 2,4 & Juho Aaltio 5 & Mari Auranen 5,6 & Emil Ylikallio 5,6 & Tuula Lönnqvist 7 & Markus Sainio 5 & Anu Suomalainen 5,8 & Henna Tyynismaa 5,9 & Pirjo Isohanni 5,7 Received: 18 April 2019 / Accepted: 18 March 2020 # The Author(s) 2020
Abstract This study examines how parents of pediatric patients might differ in their views and attitudes towards genetic technology and information when compared to adult patients. There is surprisingly little evidence on how parents compare to other parts of population in their attitudes. Previous empirical studies often relate health-related preferences and attitudes to factors such as age, education, and income instead of parental status, thus evading comparison of parents to others as health-related decision makers. Findings related to the parental status can be useful when implementing genetic technology in clinical practice. We conducted a survey of views on genetic technology and information for groups of adult neurology patients (n = 68) and parents of pediatric neurology patients (n = 31) to shed some light on this issue. In addition to our own survey instrument, we conducted other surveys to gain insight on psychosocial factors that might affect these attitudes. The results suggest that parents are more concerned about their children’s genetic risk factors when compared to the attitudes of adult patients about their own risk. For both groups, negative emotional state was associated with more concerns towards genetic information. Our study provides insights on how parental views might affect the acceptance of genetic technology and information. Keywords Genetic information . Parental attitudes . Survey . Finland
Introduction Genetic testing plays an important role for the diagnosis of genetic conditions (Stark et al. 2018). In addition to prognostic information, early diagnosis can have high diagnostic and clinical utility (Stark et al. 2018). The perceived utility of genetic testing extends often even beyond clinically actionable results as people perceive also informational value in test
results (Halverson et al. 2016). Genetic information can influence e.g. families’ decision-making, such as parental reproductive planning (Malek et al. 2017; Stark et al. 2019). The benefits that the new personalized medicine paradigm promises to accrue are seen mainly come through the increased utilization of detailed health-related information, not only in treatment but also possibly in fostering health behavior change (see, e.g., McBride et al. 2010).
Electronic supplementary material The online version of this article (https://doi.org/10.1007/s12687-020-00462-8) contains supplementary material, which is available to authorized users. * Virva Hyttinen [email protected] 1
Finnish Competition and Consumer Authority, Helsinki, Finland
2
VATT Institute for Economic Research, PO Box 1279, 00100 Helsinki, Finland
3
Depart
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