ABSTRACT
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.
Subject(s)
COVID-19 , Genetic Privacy , Genomics , Humans , Delivery of Health Care , Pandemics , Informed ConsentSubject(s)
Confidentiality/legislation & jurisprudence , Health Insurance Portability and Accountability Act/history , Confidentiality/history , Genetic Privacy/legislation & jurisprudence , Government Regulation/history , Health Insurance Portability and Accountability Act/legislation & jurisprudence , History, 20th Century , History, 21st Century , Information Dissemination/legislation & jurisprudence , United States , United States Dept. of Health and Human ServicesABSTRACT
The COVID-19 crisis has further highlighted the challenges for open science and data sharing in biomedical research and the need for more traceability and transparency.
Subject(s)
COVID-19 , Information Dissemination , Contact Tracing , Genetic Privacy , Health Policy , Humans , Security MeasuresABSTRACT
Along with the potential for breakthroughs in care and prevention, the search for genetic mechanisms underlying the spread and severity of coronavirus disease 2019 (COVID-19) introduces the risk of discrimination against those found to have markers for susceptibility. We propose new legal protections to mitigate gaps in protections under existing laws.