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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.

DOI 10.11648/j.hss.s.2016040201.18
Published in Humanities and Social Sciences (Volume 4, Issue 2-1, April 2016)

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

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), 2024. Published by Science Publishing Group

Keywords

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

References
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[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 Unpublished manuscript.
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[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.
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Author Information
  • Centre for Augmentative and Alternative Communication, University of Pretoria, Faculty of Humanities, Pretoria, South Africa; College of Education, Temple University, Philadelphia, Pennsylvania, United States

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    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://download.sciencepg.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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