Ethical Considerations in International Traumatic Brain Injury Research

1
Ethical Considerations in International Traumatic
Brain Injury Research

• Debjani Mukherjee, Ph.D.
• Donnelley Family Disability Ethics Program
• Northwestern University
• Feinberg School of Medicine

2
Overview

• Traumatic Brain Injury (TBI)
• Ethical Issues
• Cross Cultural Issues
• Ongoing Project
• Research Dilemmas
• Questions to Ponder

3
Traumatic Brain Injury (TBI)

• International Public Health Problem
• Caused by motor vehicle accidents, falls,
  assaults with and without firearms
• Heterogenous category etiology, symptomatology,
  prognosis and treatment vary widely
• Common areas of difficulty after TBI include
  physical, cognitive, emotional and social
  functioning
• Adjustment process is dynamic

4
Ethical Issues in research with persons with TBI

• Assessment of decision-making capacity
• Therapeutic misconception
• Maximizing self-determination and respect for
  autonomy
• Consideration of pre-injury and post-injury
  interests
• Addressing biases and stigma associated with
  cognitive disability

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International or Cross Cultural Issues

• Differing conceptions of health and illness
• Norms for communication of information
• Decision-making norms
• Access to healthcare
• Importance of social roles
• Family involvement in healthcare
• Religious and spiritual beliefs about health and
  illness

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Ongoing Project

• Based in Kolkata (Calcutta), India
• Long-term adjustment to TBI
• Satisfaction with Life
• Environmental Factors
• Qualitative and quantitative measures
• Data collection in process

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Research Dilemmas

• Translating Measures
• e.g. Satisfaction with Life Scale
• In most ways my life is close to my ideal.
• If I could live my life over, I would change
  almost nothing.
• Obtaining Institutional Review Board approval
• Recruiting participants

8
Research Dilemmas

• Notions of Privacy
• Encompasses spatial, psychosocial and moral
  dimensions
• Entering peoples homes
• Privacy of information collected
• Privacy of researcher
• Power differentials

9
Research Dilemmas

• Use of consent forms
• Example from fieldwork
• Establishing trust
• With colleagues
• With research participants
• Communication style and expectations

10
Questions to ponder

• What does it mean to respect persons?
• How do we balance the requirements of western
  research oversight with the cultural realities of
  non-western contexts?
• How do we work with families and systems to
  understand complex phenomena?
• How do differing notions of privacy influence the
  research process?
• What role do the multiple power differentials
  have on the research process?

11
Acknowledgements

• I would like to thank the Fulbright Scholars
  Program and Dr. Sandip Chatterjee (Park Clinic),
  Dr. Jayanti Basu Ms. Kamalika Ray (Department
  of Applied Psychology, Calcutta University) and
  the staff of the Donnelley Family Disability
  Ethics program at the Rehabilitation Institute of
  Chicago for their support and help with the
  research project.