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Ethical Issues in Conducting Research Involving Persons with Disability: A View from the Past and Some New Challenges

Received: 25 January 2016     Accepted: 10 February 2016     Published: 13 May 2016
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Abstract

This paper traces the history of conducting research involving people with disabilities and raises serious questions about the ethics of conducting research. Ethical concerns include treatment of vulnerable populations, lack of informed consent, and benefit versus undue hardship when using people with disabilities as research participants. New technological advances, such as discussions on social media, present some new ethical concerns. Two case studies are presented that illustrate new ethical challenges. Guidelines are proposed that address the right to privacy, anonymity and confidentiality.

Published in Humanities and Social Sciences (Volume 4, Issue 2-1)

This article belongs to the Special Issue Ethical Sensitivity: A Multidisciplinary Approach

DOI 10.11648/j.hss.s.2016040201.18
Page(s) 53-59
Creative Commons

This is an Open Access article, distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution and reproduction in any medium or format, provided the original work is properly cited.

Copyright

Copyright © The Author(s), 2016. Published by Science Publishing Group

Keywords

Research, Ethics, People with Disabilities, Informed Consent, Beneficence, Non-maleficence

References
[1] Von Stodden, H. (1989). Herophilus: The art of medicine in early Alexandria. Cambridge University Press: Cambridge.
[2] Jenner, E. (1969), Vaccination against smallpox. Great Mind Series, Prometheus Books.
[3] Wellerstein, A. (2011) Harry Laughlin’s “Model Eugenical Sterilization Law”. Retrieved from http://www.people.fas.harvard.edu/~wellerst/laughlin/ on May 18, 2011.
[4] United States Holocaust Memorial Museum. “Euthanasia Program.” Holocaust Encyclopedia. http://www.ushmm.org/wlc/en/?ModuleId=10005200. Accessed on January 24, 2016.
[5] Nuremberg Trials Project (2003). Introduction to NMT Case 1, U. S. A. v. Karl Brandt et al. Harvard Law School Library retrieved from http://nuremberg.law.harvard.edu/php/docs_swi.php?DI=1&text=medical on January 24, 2016.
[6] Trials of War Criminals before the Nuremberg Military Tribunals under Control Council Law No. 10, Vol. 2, Washington, D. C.: U. S. Government Printing Office, 1949, pages 181–182.
[7] Annas, G. T (2009). The legacy of the Nuremburg doctors’ trial to American bioethics and human rights. MINN. J. L. SCI & Tech. 10 (1), 19-40.
[8] Browning, C. The Origins of the Final Solution: The Evolution of Nazi Jewish Policy, September 1939 - March 1942, p. 193 found in Wikipedia http://en.wikipedia.org/wiki/Action_T4#cite_note-1 on January 24, 2016.
[9] Lifton, R. J. THE NAZI DOCTORS: Medical Killing and the Psychology of Genocide, p. 95-96, found in Wikipedia. http://en.wikipedia.org/wiki/Action_T4#cite_note-1 on January 24, 2016.
[10] Annas, G., & Grodin, M. (1992) The Nazi Doctors and the Nuremberg Code: Human Rights in Human Experimentation. New York: Oxford University Press. pp. 53–59. ISBN 978-0-19-510106-5.
[11] Keefer, A. (2011). Uninformed consent: Medical experimentation on vulnerable populations. In D. N. Bryen & A. R. Keefer (eds). A guide to embedding disability students into the humanities. Temple University. Unpublished manuscript.
[12] Hevesi, D. (2010). "Robert W. McCollum, Dean of Dartmouth Medical School, Dies at 85", The New York Times, September 25, 2010. Accessed May 25, 2011.
[13] Research (2011). Problems with human subject experimentation: Relationship to codes of research and ethics. Retrieved from research.utmb.edu/IRB/files/Ethics.pps on May 26, 2011.
[14] Good, A. (2005). Ethics in disability research. NDA Ethical Guidelines for Disability Research. Retrieved from http://www.nda.ie/cntmgmtnew.nsf/0/D6EFA30A02A47B14802570660054EC16?OpenDocument on May 26, 2011.
[15] Farrelly, M (2004). Ethics in research with people with disabilities. Annual PSI Conference, November, 2004. Retrieved from www.psihq.ie/DOCUMENTS/ERLD.PDF on May 27, 2011.
[16] Victoria Department of Justice. (2011) Easy English fact sheets. Retrieved from http://wwwlconsumer.vic.gov.au/CA on May 30, 2011.
[17] Flicker, S., Haans, D., & Skinner, H. (2004). Ethical dilemmas in research on internet communities. Qualitative Heath Research, 14(1), 124-134.
[18] King, S. A. (1996). Researching online communities. Proposed ethical guidelines for the reporting of results. The Information Society - An International Journal. Vol 12, 2, 119-128.
[19] Frankel, M. S. & Siang, S. (1999). Ethical and legal aspects of human subjects research on the internet. American Association for the Advancement of Science. Retrieved from http://www.aaas.org/spp/dspp/sfrl/projects/intres/main.htm on May 27, 2011.
[20] Hill, K. & Romich, B. (2001). A language activity monitor for supporting AAC evidence-based clinical practice, Assistive Technology, 13 (1), 12 -22.
[21] Hill, K. & Romich, B. (1999). AAC language activity monitoring and analysis for clinical intervention and research outcomes. Paper presented at the 1999 CSUN conference. Retrieved from http://www.dinf.ne.jp/doc/english/Us_Eu/conf/csun_99/session0063.html on January 24, 2016.
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  • APA Style

    Diane Nelson Bryen. (2016). Ethical Issues in Conducting Research Involving Persons with Disability: A View from the Past and Some New Challenges. Humanities and Social Sciences, 4(2-1), 53-59. https://doi.org/10.11648/j.hss.s.2016040201.18

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    ACS Style

    Diane Nelson Bryen. Ethical Issues in Conducting Research Involving Persons with Disability: A View from the Past and Some New Challenges. Humanit. Soc. Sci. 2016, 4(2-1), 53-59. doi: 10.11648/j.hss.s.2016040201.18

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    AMA Style

    Diane Nelson Bryen. Ethical Issues in Conducting Research Involving Persons with Disability: A View from the Past and Some New Challenges. Humanit Soc Sci. 2016;4(2-1):53-59. doi: 10.11648/j.hss.s.2016040201.18

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  • @article{10.11648/j.hss.s.2016040201.18,
      author = {Diane Nelson Bryen},
      title = {Ethical Issues in Conducting Research Involving Persons with Disability: A View from the Past and Some New Challenges},
      journal = {Humanities and Social Sciences},
      volume = {4},
      number = {2-1},
      pages = {53-59},
      doi = {10.11648/j.hss.s.2016040201.18},
      url = {https://doi.org/10.11648/j.hss.s.2016040201.18},
      eprint = {https://article.sciencepublishinggroup.com/pdf/10.11648.j.hss.s.2016040201.18},
      abstract = {This paper traces the history of conducting research involving people with disabilities and raises serious questions about the ethics of conducting research. Ethical concerns include treatment of vulnerable populations, lack of informed consent, and benefit versus undue hardship when using people with disabilities as research participants. New technological advances, such as discussions on social media, present some new ethical concerns. Two case studies are presented that illustrate new ethical challenges. Guidelines are proposed that address the right to privacy, anonymity and confidentiality.},
     year = {2016}
    }
    

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Author Information
  • Centre for Augmentative and Alternative Communication, University of Pretoria, Faculty of Humanities, Pretoria, South Africa

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