Akademik Veri Yönetim Sistemi
Diğer, ss.1-17, 2019
With 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.