Information Privacy for Technology Users With Intellectual and Developmental Disabilities: Why Does It Matter?

References

• Abrams, L. S. (2010). Sampling ‘hard to reach’ populations in qualitative research: The case of incarcerated youth. Qualitative Social Work, 9(4), 536–550. doi:10.1177/1473325010367821
   Google Scholar
• Acquisti, A. (2004). Privacy and security of personal information. In J. Camp & R. Lewis (Ed.), Economics of Information Security, (pp. 179–186).
   Google Scholar
• Adkins, B., Summerville, J., Knox, M., Brown, A. R., & Dillon, S. (2013). Digital technologies and musical participation for people with intellectual disabilities. New Media & Society, 15(4), 501–518. doi:10.1177/1461444812457338
   Web of Science ®Google Scholar
• Andrews, L. B. (2012). I know who you are and I saw what you did: Social networks and the death of privacy. New York, NY: Free Press.
   Google Scholar
• Balebako, R., Marsh, A., Lin, J., Hong, J. I., & Cranor, L. F. (2014). The privacy and security behaviors of smartphone app developers. In Workshop on Usable Security (USEC, 2014). San Diego, CA.
   Google Scholar
• Beauchamp, T. L., & Childress, J. F. (2009). Principles of Biomedical Ethics. USA: Oxford University Press.
   Google Scholar
• Bedini, L. A. (1993). Technology and people with disabilities: Ethical considerations. Palaestra, 9(4), 40–44.
   Google Scholar
• Bennett, D., Phillips, B. D., & Davis, E. (2017). The future of accessibility in disaster conditions: How wireless technologies will transform the life cycle of emergency management. Futures, 87, 122–132. doi:10.1016/j.futures.2016.05.004
   Web of Science ®Google Scholar
• Black, B. S., Brandt, J., Rabins, P. V., Samus, Q. M., Steele, C. D., Lyketsos, C. G., & ROSENBLATT, A. (2008). Predictors of providing informed consent or assent for research participation in assisted living residents. American Journal of Geriatric Psychiatry, 16, 83–91. doi:10.1097/JGP.0b013e318157cabd
   PubMed Web of Science ®Google Scholar
• Boxall, K., & Ralph, S. (2009). Research ethics and the use of visual images in research with people with intellectual disability. Journal of Intellectual & Developmental Disability, 34, 45–54. doi:10.1080/13668250802688306
   PubMed Web of Science ®Google Scholar
• Boyden, P., Esscopri, N., Ogi, L., Brennan, A., & Kalsy-Lillico, S. (2009). Service users leading the way: Focus group methodology in developing accessible information DVDs with people with learning disabilities. Journal of Intellectual Disabilities, 13(3), 183–194. doi:10.1177/1744629509345394
   PubMedGoogle Scholar
• Cameron, L., & Murphy, J. (2007). Obtaining consent to participate in research: The issues involved in including people with a range of learning and communication disabilities. British Journal of Learning Disabilities, 35, 113–120. doi:10.1111/j.1468-3156.2006.00404.x
   Google Scholar
• Cannon, J. C. (2005). Privacy: What developers and IT professionals should know? Harlow, UK: Addison-Wesley.
   Google Scholar
• Carey, A. C., Friedman, M. G., & Bryen, D. N. (2005). Use of electronic technologies by people with intellectual disabilities. Mental Retardation, 43(5), 322–333.
   PubMedGoogle Scholar
• Carrascal, J. P., Riederer, C., Erramilli, V., Cherubini, M., & De Oliveira, R. (2013, May). Your browsing behavior for a big mac: Economics of personal information online. In Proceedings of the 22nd International Conference on the World Wide Web (pp. 189–200). New York, NY: ACM.
   Google Scholar
• Cavoukian, A. (2012). Privacy by design [leading edge]. IEEE Technology and Society Magazine, 31(4), 18–19. doi:10.1109/MTS.2012.2225459
   Web of Science ®Google Scholar
• Chadwick, D., Wesson, C., & Fullwood, C. (2013). Internet access by people with intellectual disabilities: Inequalities and opportunities. Future Internet, 5(3), 376–397. doi:10.3390/fi5030376
   Google Scholar
• Chalghoumi, H. (2011). Balises pour l’intervention avec les technologies auprès des élèves qui ont des incapacités intellectuelles [Framework for technology intervention with pupils with intellectual disabilities] (Unpublished doctoral thesis). Université de Montréal, Montreal, Canada. Retrieved from https://papyrus.bib.umontreal.ca/jspui/bitstream/1866/5343/2/Chalghoumi_Hajer_2011_Th ese.pdf
   Google Scholar
• Chalghoumi, H. (2012). Repenser la définition des aides techniques en éducation/Rethinking the definition of assistive technology in education. Canadian Journal of Learning and Technology/La Revue Canadienne De L’apprentissage Et De La Technologie, 38(3). Retrieved from http://cjlt.csj.ualberta.ca/index.php/cjlt/article/view/628
   Google Scholar
• Chalghoumi, H., & Langevin, J. (2013). Quelles finalités pour l’intervention éducative avec les technologies auprès des élèves qui ont des incapacités intellectuelles? [What are the aims of the educational intervention with technologies for students with intellectual disabilities?] Développement Humain, Handicap Et Changement Social: Autodétermination Et Technologies Des Personnes Ayant Des Incapacités, 21(1), 35–57. Retrieved from http://www.bdsp.ehesp.fr/Base/492306/
   Google Scholar
• Dalton, A. J., & McVilly, K. R. (2004). Ethics guidelines for international multicenter research involving people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 1, 57–70. doi:10.1111/j.1741-1130.2004.04010.x
   Google Scholar
• Danezis, G., & Golle, P. (2006). Privacy enhancing technologies: 6th international workshop, PET 2006, Cambridge, UK, June 28-30, 2006, Revised selected papers (Vol. 4258). Berlin Heidelberg: Springer-Verlag.
   Google Scholar
• Davies, D. K., Stock, S. E., King, L. R., Brown, R. B., Wehmeyer, M. L., & Shogren, K. A. (2015). An interface to support independent use of Facebook by people with intellectual disability. Intellectual and Developmental Disabilities, 53(1), 30–41. doi:10.1352/1934-9556-53.1.30
   PubMed Web of Science ®Google Scholar
• Dawe, M. (2006, April). Desperately seeking simplicity: How young adults with cognitive disabilities and their families adopt assistive technologies. In Proceedings of the SIGCHI conference on human factors in computing systems (pp. 1143–1152). New York, NY: ACM.
   Google Scholar
• Debatin, B., Lovejoy, J. P., Horn, A. K., & Hughes, B. N. (2009). Facebook and online privacy: Attitudes, behaviors, and unintended consequences. Journal of Computer‐Mediated Communication, 15(1), 83–108. doi:10.1111/j.1083-6101.2009.01494.x
   Web of Science ®Google Scholar
• Didden, R., Scholte, R. H., Korzilius, H., De Moor, J. M., Vermeulen, A., O’Reilly, M., … Lancioni, G. E. (2009). Cyberbullying among students with intellectual and developmental disability in special education settings. Developmental Neurorehabilitation, 12(3), 146–151. doi:10.1080/17518420902971356
   PubMed Web of Science ®Google Scholar
• Doyle, J. (2009). Using focus groups as a research method in intellectual disability research: A practical guide. Galway, Ireland: The National Federation of Voluntary Bodies.
   Google Scholar
• Fereday, J., & Muir-Cochrane, E. (2006). Demonstrating rigor using thematic analysis: A hybrid approach of inductive and deductive coding and theme development. International Journal of Qualitative Methods, 5(1), 80–92. doi:10.1177/160940690600500107
   Google Scholar
• Fraser, M., & Fraser, A. (2001). Are people with learning disabilities able to contribute to focus groups on health promotion? Journal of Advanced Nursing, 33(2), 225–233. doi:10.1046/j.1365-2648.2001.01657.x
   PubMed Web of Science ®Google Scholar
• Government of Canada. (1991). Plain language, clear and simple. Multiculturalism and Citizenship. Retrieved from http://publications.gc.ca/site/eng/9.644871/publication.html
   Google Scholar
• Griffin, T., & Balandin, S. (2004). Ethical research involving people with intellectual disabilities. The International Handbook of Applied Research in Intellectual Disabilities, (pp. 61–82) UK: Wiley.
   Google Scholar
• Hällgren, M., & Kottorp, A. (2005). Effects of occupational therapy intervention on activities of daily living and awareness of disability in persons with intellectual disabilities. Australian Occupational Therapy Journal, 52(4), 350–359. doi:10.1111/j.1440-1630.2005.00523.x
   Google Scholar
• Hendricks, D. R., & Wehman, P. (2009). Transition from school to adulthood for youth with autism spectrum disorders: Review and recommendations. Focus on Autism and Other Developmental Disabilities., 24(2), 77–88. doi:10.1177/1088357608329827
   Web of Science ®Google Scholar
• Holmes, K. M., & O’Loughlin, N. (2014). The experiences of people with learning disabilities on social networking sites. British Journal of Learning Disabilities, 42(1), 1–7. doi:10.1111/bld.12001
   Web of Science ®Google Scholar
• Holvast, J. (1993). Vulnerability and privacy-are we on the way to a risk-free society. Facing the Challenge of Risk and Vulnerability in an Information Society, 33, 267–279.
   Web of Science ®Google Scholar
• Hoppestad, B. S. (2013). Current perspective regarding adults with intellectual and developmental disabilities accessing computer technology. Disability and Rehabilitation: Assistive Technology, 8(3), 190–194. doi:10.3109/17483107.2012.723239
   PubMedGoogle Scholar
• Iachello, G., & Hong, J. (2007). End-user privacy in human–computer interaction. Foundations and Trends in Human–Computer Interaction, 1(1), 1–137. doi:10.1561/1100000004
   Google Scholar
• Inglis, P., & Cook, T. (2011). Ten top tips for effectively involving people with a learning disability in research. Journal of Learning Disabilities and Offending Behavior, 2(2), 98–104. doi:10.1108/20420921111152441
   Google Scholar
• John, N. A., & Peters, B. (2017). Why privacy keeps dying: Thetrouble with talk about the end of privacy. Information, Communication & Society, 20(2), 284–298. doi:10.1080/1369118X.2016.1167229
   Web of Science ®Google Scholar
• Kaehne, A., & O’Connell, C. (2010). Focus groups with people with learning disabilities. Journal of Intellectual Disabilities, 14(2), 133–145. doi:10.1177/1744629510381939
   PubMedGoogle Scholar
• Kerkhof, Y. J., Graff, M. J., Bergsma, A., de Vocht, H. H., & Dröes, R. M. (2016). Better self-management and meaningful activities thanks to tablets? Development of a personcentered program to support people with mild dementia and their carers through use of hand-held touch screen devices. International Psychogeriatrics, 28(11), 1917–1929.
   PubMed Web of Science ®Google Scholar
• Kohlberg, L. 1976. Moral stages and moralization: The cognitivedevelopmental. In T. Lickona (Ed.), Moral development and behavior: Theory, research and social issues. New York, NY: Holt, Rinehart and Winston.
   Google Scholar
• Disability Research, 57(5), 462–477. doi:10.1111/jir.12002
   Google Scholar
• Kokolakis, S. (2017). Privacy attitudes and privacy behavior: A review of current research on the privacy paradox phenomenon. Computers & Security, 64, 122–134. doi:10.1016/j.cose.2015.07.002
   Web of Science ®Google Scholar
• Kottorp, A. (2003). Occupation-based evaluation and intervention: Validity of the Assessment of Motor and Process Skills when used with persons with mental retardation (Unpublished d octoral dissertation). Sweden: Umeå Universitet.
   Google Scholar
• Kottorp, A., Bernspång, B., & Fisher, A. G. (2003). Activities of daily living in persons with intellectual disability: Strengths and limitations in specific motor and process skills. Australian Occupational Therapy Journal, 50(4), 195–204. doi:10.1111/j.1440-1630.2003.00401.x
   Google Scholar
• Lachapelle, Y., Lussier-Desrochers, D., Caouette, M., & Therrien-Bélec, M. (2011). L’utilisation d’un assistant au déplacement: étude de cas en déficience intellectuelle. Revue Francophone De La Déficience Intellectuelle, 22, 63–68.
   Google Scholar
• Lachapelle, Y., Lussier-Desrochers, D., Caouette, M., & Therrien-Bélec, M. (2013). Expérimentation d’une technologie mobile d’assistance à la réalisation de tâches pour soutenir l’autodétermination de personnes présentant une déficience intellectuelle. Revue Francophone De La Déficience Intellectuelle, 24, 96–107. doi:10.7202/1021267ar
   Google Scholar
• Lachapelle, Y., Lussier-Desrochers, D., & Pigot, H. (2007). Des TIC en soutien à l’autodétermination des personnes présentant une déficience intellectuelle. Revue Québécoise De Psychologie, 28(1), 111–123.
   Google Scholar
• Landau, R., & Werner, S. (2012). Ethical aspects of using GPS for tracking people with dementia: Recommendations for practice. International Psychogeriatrics, 24, 358–366. doi:10.1017/S1041610211001888
   PubMed Web of Science ®Google Scholar
• Levin, A., & Nicholson, M. J. (2005). Privacy law in the United States, the EU and Canada: The allure of the middle ground. U OTTAWA L & TECH Journal, 2, 357.
   Google Scholar
• Lin, E., Balogh, R., Cobigo, V., Ouellette-Kuntz, H., Wilton, A. S., & Lunsky, Y. (2013). Using administrative health data to identify individuals with intellectual and developmental disabilities: A comparison of algorithms. Journal of Intellectual Disability Research, 57(5), 462–477. doi:10.1111/jir.12002
   Google Scholar
• Löfgren-Mårtenson, L. (2008). Love in cyberspace: Swedish young people with intellectual disabilities and the internet 1. Scandinavian Journal of Disability Research, 10(2), 125–138. doi:10.1080/15017410701758005
   Google Scholar
• Löfgren-Mårtenson, L., Sorbring, E., & Molin, M. (2015). “T@ ngled up in blue”: Views of parents and professionals on internet use for sexual purposes among young people with intellectual disabilities. Sexuality and Disability, 33(4), 533–544. doi:10.1007/s11195-015-9415-7
   Web of Science ®Google Scholar
• Macenaite, M. (2017). From universal towards child-specific protection of the right to privacy online: Dilemmas in the EU general data protection regulation. New Media & Society, 19(5), 765–779.
   Web of Science ®Google Scholar
• Mayo, A. M., & Wallhagen, M. I. (2009). Considerations of informed consent and decision-making competence in older adults with cognitive impairment. Research in Gerontological Nursing, 2(2), 103–111. Retrieved from https://search.proquest.com/docview/194674464?accountid=14701
   PubMed Web of Science ®Google Scholar
• McCallion, P., & McCarron, M. (2004). Using focus groups to elicit views across disciplines and national experiences with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 1(2), 1–7. doi:10.1111/j.1741-1130.2004.04015.x
   Google Scholar
• McClimens, A., & Gordon, F. (2009). People with intellectual disabilities as bloggers What’s social capital got to do with it anyway? Journal of Intellectual Disabilities, 13(1), 19–30. doi:10.1177/1744629509104486
   PubMedGoogle Scholar
• McDonald, K. E., & Kidney, C. A. (2012). What is right? Ethics in intellectual disabilities research. Journal of Policy and Practice in Intellectual Disabilities, 9(1), 27–39. doi:10.1111/jppi.2012.9.issue-1
   Web of Science ®Google Scholar
• Miles, M. B., Huberman, A. M., & Saldana, J. (2014). Qualitative data analysis. Santa Clara, CA: Sage.
   Google Scholar
• Morgan, D. L., & Krueger, R. A. (1997). Focus group kit: Volumes 1-6. Thousand Oaks, CA: Sage.
   Google Scholar
• Niemeijer, A., Frederiks, B., Depla, M., Eefsting, J., & Hertogh, C. (2013). The place of surveillance technology in residential care for people with intellectual disabilities: Is there an ideal model of application. Journal of Intellectual Disability Research, 57(3), 201–215. doi:10.1111/jir.2013.57.issue-3
   PubMed Web of Science ®Google Scholar
• Nind, M., & Vinha, H. (2016). Creative interactions with data: Using visual and metaphorical devices in repeated focus groups. Qualitative Research, 16(1), 9–26. doi:10.1177/1468794114557993
   PubMed Web of Science ®Google Scholar
• O’Brolcháin, F., Jacquemard, T., Monaghan, D., O’Connor, N., Novitzky, P., & Gordijn, B. (2016). The convergence of virtual reality and social networks: Threats to privacy and autonomy. Science and Engineering Ethics, 22(1), 1–29. doi:10.1007/s11948-014-9621-1
   PubMed Web of Science ®Google Scholar
• Palm, E., & Hansson, S. O. (2006). The case for ethical technology assessment (eTA). Technological Forecasting and Social Change, 73(5), 543–558. doi:10.1016/j.techfore.2005.06.002
   Web of Science ®Google Scholar
• Pearson, S., & Benameur, A. (2010, November). Privacy, security and trust issues arising from cloud computing. Proceedings of the 2nd IEEE International Conference on Cloud Computing Technology and Science, CloudCom 2010 (pp. 693–702). Indianapolis, IN: IEEE.
   Google Scholar
• Perry, J. (2004). Interviewing people with intellectual disabilities. The International Handbook of Applied Research in Intellectual Disabilities, 116–131. doi:10.1002/9780470713198.ch5/pdf
   Google Scholar
• Perry, J., Beyer, S., & Holm, S. (2009). Assistive technology, telecare and people with intellectual disabilities: Ethical considerations. Journal of Medical Ethics, 35(2), 81–86. doi:10.1136/jme.2008.024588
   PubMed Web of Science ®Google Scholar
• Reidenberg, J. R., Bhatia, J., Breaux, T. D., & Norton, T. B. (2016). Ambiguity in privacy policies and the impact of regulation. The Journal of Legal Studies, 45(S2), S163–S190. doi:10.1086/688669
   Google Scholar
• Sauer, A. L., Parks, A., & Heyn, P. C. (2010). Assistive technology effects on the employment outcomes for people with cognitive disabilities: A systematic review. Disability and Rehabilitation: Assistive Technology, 5(6), 377–391. doi:10.3109/17483101003746360
   PubMedGoogle Scholar
• Schultz, R. A. (Ed.). (2006). Contemporary issues in ethics and information technology. Hershey, PA: IGI Global.
   Google Scholar
• Seale, J. (2014). The role of supporters in facilitating the use of technologies by adolescents and adults with learning disabilities: A place for positive risk-taking? European Journal of Special Needs Education, 29(2), 220–236. doi:10.1080/08856257.2014.906980
   Web of Science ®Google Scholar
• Seale, J., & Chadwick, D. (2017). How does risk mediate the ability of adolescents and adults with intellectual and developmental disabilities to live a normal life by using the Internet?. Cyberpsychology: Journal of Psychosocial Research on Cyberspace, 11(1), article 2. http://dx.doi.org/10.5817/CP2017-1-2
   Google Scholar
• Shpigelman, C. N., & Gill, C. J. (2014). How do adults with intellectual disabilities use facebook? Disability & Society, 29, 1601–1616. doi:10.1080/09687599.2014.966186
   Web of Science ®Google Scholar
• Sim, J. (1998). Collecting and analysing qualitative data: Issues raised by the focus group. Journal of Advanced Nursing, 28, 345–352. doi:10.1046/j.1365-2648.1998.00692.x
   PubMed Web of Science ®Google Scholar
• Stock, S. E., Davies, D. K., Wehmeyer, M. L., & Lachapelle, Y. (2011). Emerging new practices in technology to support independent community access for people with intellectual and cognitive disabilities. NeuroRehabilitation, 28, 261–269.
   PubMed Web of Science ®Google Scholar
• Wehmeyer, M. L., Smith, S. J., Palmer, S. B., Davies, D. K., & Stock, S. E. (2004). Technology use and people with mental retardation. International Review of Research in Mental Retardation, 29, 291–337.
   Google Scholar
• Wilkinson, S. (2004). Focus group research. In D. Silverman (Ed.), Qualitative research: theory, method and practice (pp. 177–199). Thousand Oaks, CA: Sage.
   Google Scholar
• Zwijsen, S. A., Niemeijer, A. R., & Hertogh, C. M. (2011). Ethics of using assistive technology in the care for community-dwelling elderly people: An overview of the literature. Aging & Mental Health, 15, 419–427. doi:10.1080/13607863.2010.543662
   PubMed Web of Science ®Google Scholar