Professional ethics in disability research. By Ms. kirtisudha Rajput

1. Professional Ethics in
Disability Research
Ms. Keertisudha Rajput
Lecturer in Rehabilitation Psychology
NIEPID, RC, Kolkata

2. What is Ethics?
• It is a set of concepts and principles that guide us in
determining what behaviour helps or harms sentient
creatures
- Richard William Paul and Linda Elder
• Norms for conduct that distinguish between
acceptable and unacceptable behaviour
• Ethics or moral philosophy is a
branch of philosophy that "involves systematizing,
defending, and recommending concepts of right and
wrong behaviour"

3. History
• The Nuremberg Code of 1947 and the Declaration of
Helsinki (1964 and amendments) have informed the
modern shape of human research ethics in Western
Europe and North America.
• These guidelines, which were developed initially for
medical research, aimed to protect people from
exploitation in the name of research by encapsulating
the principles of protection and respect for human
participants, including autonomy and informed
consent, justice, beneficence, and nonmaleficence.

4. Importance of Adherence to Ethics in
Research
Ethical standards promote –
• the aims of research, such as knowledge, truth, and avoidance
of error. For example, prohibitions against fabricating,
falsifying, or misrepresenting research data promote the truth
and minimize error.
• the values that are essential to collaborative work, such as
trust, accountability, mutual respect, and fairness.
Protection of Intellectual Property Interests
– Authorship
– Patenting
– Data sharing policies
– Confidentiality in Peer Reviewing
- Resnick, D. B. (2015)

5. Importance of Adherence to Ethics in
Research
Ethical standards promote –
• ensure that researchers can be held accountable to the public
– Human Subjects Protection
– Animal Care and Use
• help to build public support for research. People are more
likely to fund a research project if they can trust the quality
and integrity of research.
• promote a variety of other important moral and social values,
such as social responsibility, human rights, animal welfare,
compliance with the law, and public health and safety. Ethical
lapses in research can significantly harm human and animal
subjects, students, and the public
-Resnick, D. B. (2015)

6. Ethics in Disability Research
• Honesty and Integrity:
– It is better to undersell than exaggerate
– Keeping agreements and acting sincerely
• Objectivity
• Carefulness
• Openness
• Respect for Intellectual Property Right; No to
Plagiarism
• Confidentiality
• Responsible publication

7. Core Values in Disability Research
• Enhance Wellbeing
• Autonomy
• Dignity and Respect esp. for vulnerable
population
• Voluntary Participation
• Free and Informed Consent
• Privacy and Confidentiality
• Justice and Inclusion

8. Role of Ethics Committee
• to consider that what you are doing is appropriate
and proportionate to your research aims
• Formally granting ethical approval with an
approval number
• Provide advice to the researcher in the situation of
dilemma

9. Challenges in Adherence to Ethics in
Disability Research
• Limited Comprehension of the Participants
• Gaining Informed Consent
• Time Taking
• Difficulty in making the related content accessible

10. References
• Durham J., Brolan C. E. & Mukandi B, (2014). The Convention
on the Rights of Persons With Disabilities: A Foundation for
Ethical Disability and Health Research in Developing Countries
as retrived on 22nd December 2020 from The Convention on the
Rights of Persons With Disabilities: A Foundation for Ethical
Disability and Health Research in Developing Countries
(nih.gov)
• (No Author), Ethical Issues in Research as derived on 22nd
December 2020 from Ethical Issues in Research | SkillsYouNeed

11. Interesting Additional Reading
• (PDF) Ethical Issues in Conducting Research
Involving Persons with Disability: A View from
the Past and Some New Challenges
(researchgate.net)
• Full article: Voiceless subjects? Research ethics
and persons with profound intellectual disabilities
(tandfonline.com)

12. Thank You !