4.2.1. Privacy/confidentiality issues
E-technologies bring with them a tangled knot of privacy and confidentiality
issues, frequently made more confusing by complex and
under- or even un-developed regulatory guidelines from IRBs, funding
agencies, and other stakeholder organizations. The potential violation
of ethical standards and patient privacy and confidentiality, as well as
professional codes of conduct, are major contributors to institutional
hesitancy to allow and approve the use of new technologies in clinical
research. Further, e-technologies, especially mobile apps,may have unknown
or difficult to anticipate privacy and/or confidentiality problems
that are further complicated by the risk of “hacking” or other cyber attacks.
Researchers need to knowthe current federal, state, and local regulations
and be cognizant that these are likely to evolve and expand
over time.