AbstractWith the increasing use of genetic testing and applications of bioinformatics in healthcare, genetic and genomic data needs to be integrated into electronic health systems. We administered a descriptive survey to 174 participants to elicit their views on the privacy and security of mobile health record systems and inclusion of their genetic data in these systems. A survey was implemented online and on site in two genetic diagnostic centres. Nearly half of the participants or their close family members had undergone genetic testing. Doctors constituted the only profession group that people trusted for the privacy of their health and genetic data; however, people chose to limit even their doctor’s access to their genetic/health records. The majority of the respondents preferred to keep full access for themselves. Several participants had negative experience or preconceptions about electronic health records: the medical reports of 9.7% of the respondents had been used or released without their consent, 15.1% stated that they avoided being tested due to violation risks, and 3.5% asked their doctors to enter a less embarrassing health status in their records. The participants wanted to see some regulations and security measurements before using any system for their health/genetic data. In addition, significantly more participants stating that storing genetic data in a mobile system was riskier compared to other health data. Furthermore, the comparative analysis revealed that being young, being a woman and having higher education were associated with having greater privacy concerns.
Mobile health education and patient perspectives on sharing prenatal genetic data: a randomized trial
