Protection of Privacy of Information Rights among Young Adults with Developmental Disabilities

Abstract

Protection of privacy of information for young adults with developmental disabilities and their families is essential to promote quality of life, well-being, empowerment, and inclusion. Despite this, the young adults’ information privacy rights are increasingly at risk. This paper provides a scoping review, applying Arksey and O’Malley’s (2005) approach, of all published peer-reviewed journal articles and gray literature to examine the barriers and facilitators in utilization of legislation that protects the collection, use, disclosure, and access of personal information in Canada. The scoping review process was further expanded with a rigorous reliability method and applied a socio-ecological framework to the final 47 studies. National and international policy and legislation (macro level), organization-based factors (meso), young adults and community interactions (exo), and individual disability related factors (micro) are examined. The review identifies the barriers and highlights the importance of facilitators for acting on personal privacy rights.

The Bangladeshi Rights and Protection of Persons With Disability Act of 2013: A Policy Analysis

“…As such, the government of Bangladesh is mandated to protect the privacy of CWDs and their families, especially, those who are benefiting from their services. Khanlou et al (2018) recommend three areas that may be useful to Bangladeshi policymakers in protecting the privacy and confidentiality of CWDs and their families. First, there is the need to raise awareness, knowledge, and skills development among various key stakeholders working with CWDs (e.g., family members, service providers) regarding the privacy rights of CWDs and their families.…”

“…Second, it is essential to promote information about privacy legislation through education among key stakeholders. Finally, there is a need for government commitment to the implementation of existing legislation to allow CWDs and their families to exercise their privacy of information rights ( Khanlou et al, 2018 ). These recommendations are supported by our analysis and are especially important in protecting the privacy and confidentiality of CWDs and their families.…”

“…Privacy and confidentiality. The protection of privacy and confidentiality is critical for CWDs and their families, given that they are at high risk of exploitation of their personal information as well as dependency on multiple communitybased and private agencies (Khanlou et al, 2018). As a result, the lack of protection of the privacy and confidentiality of the records of CWDs could raise the issue of violation of the rights of these individuals (Articles 22 and 31 of the CRPD).…”

Navigating E-Mental Health

“…the overwhelming number of apps available, choosing a trustable tool for patients remains a challenging task. Furthermore, the lack of relevant legislation about the privacy policies of health apps can be harmful for the users (Khanlou et al 2018;Kramer and Fu 2017). These factors warrant universal guidelines that experts and users agree upon and apply to select the most suitable apps safely usable.…”