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.
Arksey, H., & O’Malley, L. (2005). Scoping studies: towards a methodological framework. Journal of Social Research Methodology, 8, 19–32. CrossRef
Austin, L. (2006). Is consent the foundation of fair information practices? Canada’s experience under PIPEDA. The University of Toronto Law Journal, 56(2), 181–215. CrossRef
Beardwood, J. (2015). The new Canadian digital privacy act: the good, the bad and the ugly. new legislation creates new problems as it fixes others. CRI, 129–134.
Canadian Association for Community Living. (2011). Inclusion of Canadians with intellectual disabilities. Toronto: CACL Retrieved from http://www.cacl.ca/sites/default/files/National%20Report%20Card%202013%20ENG%20Final.pdf.
Central East Local Health Integration Network. (2009). Final Report. Early youth interventions project report. Transitional Age Youth and Health Promotion. Ontario: Central East LHIN Retrieved from http://www.canadian-patient-consent-form.com/form/86347912-Full-Report-Central-East-LHIN.
Clement, A., & Obar, J. A. (2016). Keeping internet users in the know or in the dark an analysis of the data privacy transparency of Canadian internet carriers. Journal of Information Policy, 6, 294–331. CrossRef
Community Living-Central Huron. (2015). Community living-Central Huron policies & procedures. Ontario: CL-CH Retrieved from http://www.clch.ca/policy.
Community Living- Huntsville. (2012). Section policies & procedures. Policy title service records and retention. Ontario: Community Living-Huntsville Retrieved from http://www.clhuntsville.ca/wp-content/uploads/2014/02/Policy-and-Procedures.pdf.
Desai, A. (2013). Towards an integrated network (second edition): working together to avoid criminalization of people with mental health problems. Ottawa, ON: St. Leonard’s Society of Canada.
Developmental Services Ontario. (2016). What is a developmental disability? Ontario: DSO Retrieved from: http://www.dsontario.ca/whats-a-developmental-disability.
Gagnon, M.-P., Breton, E., Fortin, J.-P., Khoury, L., Dolovich, L., Price, D., Wiljer, D., Bartlett, G., & Archer, N. (2016). Adoption of electronic personal health records in Canada: perceptions of stakeholders. International Journal of Health Policy Management, 5(7), 425–433. CrossRefPubMedPubMedCentral
Geist, M. (2016). The policy battle over information and digital policy regulation: a Canadian perspective. Theoretical Inquiries in Law, 17, 415–449. CrossRef
Joffe, K. (2010). Enforcing the rights of people with disabilities in Ontario’s developmental services system. In The Law as it affects persons with disabilities. Ottawa: Law Commission of Ontario.
Keith, B. C. (2004). Privacy north of the border: 10 things you should know about Canadian personal information laws. American Bar Association, Business Law Section, 14(2). Retrieved from http://www.americanbar.org/content/dam/aba/publications/blt/2004/11/privacy-north-of-border-200411.authcheckdam.pdf.
Khanlou, N. (2018). Final report: Developmental services research Grant Fund. Toronto: York University.
Khanlou, N., Mantini, A., & Degendorfer, K. (2017b). The YADD privacy project: improving privacy for young adults with developmental disabilities through research and innovative knowledge translation. Toronto: York University.
Kindred Home Care. (2012). Life at home just got better: providing kindred care. New Brunswick: KHC. Retrieved from kindredhomecare.com/wp-content/uploads/2012/10/KHC-Training-Textbook-Sample.pdf.
Kitchener Downtown Community Health Centre. (2012). Kitchener downtown community health Centre: client related policies. Kitchener, ON: KDCHC Retrieved from http://www.kdchc.org/wp-content/uploads/2012/02/Client-Policies-Web-2.pdf.
Lacobucci, F. (2014). Police encounters with people in crisis: an independent review. Toronto Police Service, 1–413.
Larivie’re-Bastien, D., & Racine, E. (2011). Ethics in health care services for young persons with neurodevelopmental disabilities: a focus on cerebral palsy. Journal of Child Neurology, 26(10), 1221–1229. CrossRef
Law Commission of Ontario. (2017a). Background and contexts in which the law operates. Toronto: LCO Retrieved from https://www.lco-cdo.org/en/our-current-projects/legal-capacity-decision-making-and-guardianship/legal-capacity-decision-making-and-guardianship-discussion-paper-2/i-background-and-contexts-in-which-the-law-operates-2/.
Law Commission of Ontario. (2017b). Legal capacity, decision-making and guardianship: final report. Toronto, ON: LCO Retrieved from https://www.lco-cdo.org/en/our-current-projects/legal-capacity-decision-making-and-guardianship/.
Legislative Assembly of Ontario. (2008). Committee documents: standing committee on social policy - 2008-Aug-28—review of the Personal Health Information Protection Act, 2004. Ottawa, ON: Legislative Assembly of Ontario Retrieved from http://www.ontla.on.ca/web/committee-proceedings/committee_transcripts_details.do?locale=en&Date=2008-08-28&ParlCommID=8875&BillID=&Business=Review+of+the+Personal+Health+Information+Protection+Act%2C+2004&DocumentID=23176#P84_5361.
Luker, K. (2009). The age of the electronic health record. CASLPO Today, 7(3), 13–17.
Mental Health Commission of Canada. (2015). Taking the next step forward: Building a responsive mental health and addictions system for emerging adults. Ottawa, ON: MHCC.
Mills, S. K., Yao, R. S., & Chan, Y. S. (2003). Privacy in Canadian health networks: challenges and opportunities. Leadership in Health Services, 16(1), 1–10. CrossRef
Ministry of Health and Long-Term Care. (2006). Community care access centres: client services policy manual. Toronto: MHLTC Retrieved from http://www.ontla.on.ca/library/repository/mon/26004/316651.pdf.
Moore, K.M., Belanger, P., & Biro, S. (2016). Understanding health inequities and access to primary health care in Southeastern Ontario. Retrieved from http://www.kflaphi.ca/wp-content/uploads/HealthInequities_FullReport.pdf.
Office of the Privacy Commissioner. (2016). 2015–2016 annual report to parliament on the personal information protection and electronic documents act and the privacy. Gatineau, QC: OPC Retrieved from https://www.priv.gc.ca/en/opc-actions-and-decisions/ar_index/201516/ar_201516/.
Ontario Law. (2008). Services and Supports to Promote the Social Inclusion of Persons with Developmental Disabilities Act, 2008, S.O. 2008, c. 14. Ontario: Ontario Law Retrieved from https://www.ontario.ca/laws/statute/08s14.
Peekhaus, W. (2008). Personal health information in Canada: a comparison of citizen expectations and legislation. Government Information Quarterly, 25, 669–698. CrossRef
Personal Health Information Protection Act (PHIPA), 2004, SO 2004, c 3, Sch A. (2004). Retrieved from: http://canlii.ca/t/53154.
Personal Information Protection and Electronic Documents Act (PIPEDA), SC 2000, c 5. (2000). Retrieved from: http://canlii.ca/t/52hmg.
Repetto, J. B., Gibson, R. W., Lubbers, J. H., Gritz, S., & Reiss, J. (2008). Practical applications of confidentiality rules to health care transition instruction. Remedial and Special Education, 29(2), 118–126. CrossRef
Renfrew County Catholic District School Board. (2014). INDEX: administration policies & procedures. Appropriate use of technology guidelines. Renfrew, ON: RCCDSB Retrieved from: https://drive.google.com/file/d/1RJyTkV_X433H4mdT2Zvim3DGQFznQrOp/view, Index.
Roebuck, R., Paquet, M. & Coultes-Macleod, J. (2008). Improving health outcomes for children and youth with developmental disabilities. Retrieved from: http://www.surreyplace.on.ca/documents/Resources/Children's%20Forum%20Literature %20Review_final(web).pdf.
Rose, R. V., & Rose, L. H. (2014). Appreciating healthcare data privacy laws in Canada, the United Kingdom, and the United States. The EDP Audit, Control, and Security Newsletter, 49(5), 18–24.
Rule, J. B. (2004). Toward strong privacy: values, markets, mechanisms and institutions. University of Toronto Law Journal, 54(2), 183–225. CrossRef
Seelig, R. (2006). New technology provides urgent medical information and protects privacy: providing important information in medical situations for the developmentally disabled. The Exceptional Parent, 36(5), 47–51.
Shimmell, L., & Gioia Di Vincenzo, G. D. (Eds.). (2017). Master of science occupational therapy MSc (OT). Clinical education handbook. Hamilton, ON: McMaster University, Faculty of Health Sciences.
Siegel, A., Denny, W., Poff, K. W., Larose, C., Hale, R., & Hintze, M. (2009). Survey of privacy law developments in 2009: United States, Canada, and the European Union. The Business Lawyer, 65(1), 285–307.
Simcoe York Dual Diagnosis Education Committee. (2015). Supports and services for persons with a dual diagnosis: a resource manual for York region families. Simcoe York, ON: SYDDEC Retrieved from http://www.community-networks.ca/wp-content/uploads/2015/11/central-york-ddx-resource-guide.pdf.
Skouge, J.R., Kelly, M.L., Roberts, K.D., Leake, D.W., & Stodden, R.A. (2007). Technologies for self-determination for youth with developmental disabilities. Education and training in developmental disabilities, 42(4), special conference issue research to practice, 475–482.
Tricco, A., Lillie, E., Zarin, W., O’Brien, K., Coquohoun, H., Kastner, et al. (2016). A scoping review on the conduct and reporting of scoping reviews. BMC Medical Research Methodology, 16(15), 1–10.
Trottier, V. & Kaattari. J. (2010). Capacity Plus: Organizational Capacity Resource Guide for Ontario’s Community Literacy Agencie. Community literacy of Ontario. Retrieved from http://www.communityliteracyofontario.ca/wp/wp-content/uploads/2013/08/capacity_plus_book_02.pdf.
Urowitz, S., Wiljer, D., Apatu, E., Eysenbach, G. DeLenardo, C, Harth, T., Pai, H., & Leonard, K.J. (2008). Is Canada ready for patient accessible electronic health records? A national scan. BMC Medical Informatics and Decision Making, 8(33), 1–7.
Wappel, T. (2007). Statutory review of the personal information protection and electronic documents act (PIPEDA): 4th report of the Standing Committee on Access to Information, Privacy and Ethics /. Standing Committee on Access to Information, Privacy and Ethics, 2007. Retrieved from https://search.library.utoronto.ca/details?6228520.
Wedge. (2014). Enduring powers of attorney and financial abuse of older persons are existing safeguards sufficient? Retrieved from http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.855.5092&rep=rep1&type=pdf.
Wellington North. (2015). Admin. & finance committee meeting minutes. Retrieved from https://wellington-north.com/content/government/committees-of-council/administration-finance-committee/2015-agendas-minutes/12-17-2015-administration-finance-minutes.pdf.
- Protection of Privacy of Information Rights among Young Adults with Developmental Disabilities
- Springer US
International Journal of Mental Health and Addiction
Print ISSN: 1557-1874
Elektronische ISSN: 1557-1882