Exploring the challenges of and solutions to sharing personal genomic data for use in healthcare

Exploring the challenges of and solutions to sharing personal genomic data for use in healthcare
Lasse Parvinen, Ari Alamäki, Heli Hallikainen, Marko Mäki
Health Informatics Journal, January-March 2023; 29(1)
Boosted by the COVID-19 pandemic, as well as the tightened General Data Protection Regulation (GDPR) legislation within the European Union (EU), individuals have become increasingly concerned about privacy. This is also reflected in how willing individuals are to consent to sharing personal data, including their health data. To understand this behaviour better, this study focuses on willingness to consent in relation to genomic data. The study explores how the provision of educational information relates to willingness to consent, as well as differences in privacy concerns, information sensitivity and the perceived trade-off value between individuals willing versus unwilling to consent to sharing their genomic data. Of the respondents, 65% were initially willing to consent, but after educational information 89% were willing to consent and only 11% remained unwilling to consent. Educating individuals about potential health benefits can thus help to correct the beliefs that originally led to the unwillingness to share genomic data.

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