15th Forum – Online, 30 November-9 December 2021

Theme of the Meeting
Ethical issues arising in research with people with mental health conditions
Organisers

  • The Wellcome Trust
  • Medical Research Council-United Kingdom (MRC UK)
  • National Institutes of Health-Fogarty International Center (NIH-FIC)
  • The University of Toronto

Planning Committee

Members of the Planning Committee for this meeting were:

Ross Upshur, University of Toronto, Canada

Caesar Atuire, University of Ghana, Ghana

Anna Chiumento, Liverpool University, UK

Charlotte Hanlon, Kings College London and Addis Ababa University, based in Ethiopia

Sharon Kaur, University of Malaya, Malaysia

David Wendler, Department of Bioethics, NIH Clinical Centre, USA

Eleni Misganaw, Global Mental Health Peer Network and Mental Health Service Users’ Association, Ethiopia

Kaustubh Joag, Indian Law Society, India

Ana Palmero, Ministry of Health, Argentina

Rosemary Musesengwa, Oxford University, UK

Karen Athie, Health Secretariat of the Rio de Janeiro State Government and Global Mental Health Peer Network, Brazil

Dan Stein, University of Cape Town, South Africa

Dixon Chibanda, African Mental Health Research Initiative

Katherine Littler, World Health Organisation, Switzerland

Programme and Presentations

 

Theme 1: Conceptualisation of mental health conditions

  • Introduction to the theme
    Caesar Atuire, University of Ghana, Ghana
  • Genetics attribution and mental illness: Implications for moral agency and moral responsibility from the perspective of an African philosophy (written case study, presentation)
    Olivia Matshabane – University of Cape Town, South Africa
  • Ethics in child mental health research (written case study, presentation)
    Priscilla Giri – DLR Prerna, India

 

Theme 2: Maximising impactful, locally-relevant research

  • Introduction to the theme
    Anna Chiumento, Liverpool University, UK
  • Ethical issues in research evaluating the implementation of community based sociotherapy in refugee settings in Rwanda and Uganda (written case study, presentation)
    Emmanuel Sarabwe – Community Based Sociotherapy Rwanda
  • The need for integration of health benefits as an ethical challenge in mental health research among low resource populations in India (written case study, presentation)
    Amit Chakrabarti – Indian Council of Medical Research-Centre on Non-Communicable Diseases, India
  • Maximising meaningful and impactful mental health research for Syrian refugees during Covid-19 – co-creation, local relevance and ethical practice (written case study, presentation)
    Clara Calia – University of Edinburgh, UK

 

Theme 3: Engagement and co-creation

  • Introduction to the theme
    Charlotte Hanlon, King’s College London, UK and Addis Ababa University, Ethiopia
  • Co-developing communication activities for a community-based trial on suicide prevention, India (written case study, presentation)
    Nikhil Jain – Centre for Mental Health Law & Policy, India
  • Challenges in involvement of people with mental health problems in anti-stigma program in Nepal: Lessons from Reducing Stigma among Healthcare Provider (RESHAPE) project (written case study, presentation)
    Dristy Gurung – Transcultural Psychosocial Organization, Nepal
  • Ethical implications of using family key-informants to understand the transgenerational impact of severe mental illnesses in rural Ethiopia (written case study, presentation)
    Wubalem Fekadu – Addis Ababa University, Ethiopia

 

Theme 4: Governance of research involving people with mental health conditions

  • Introduction to the theme
    Sharon Kaur, University of Malaya, Malaysia
  • Tensions between the UN CRPD and CIOMS Guidelines: implications for fair inclusion of individuals living with psychosocial disabilities in research (written governance paper, presentation)
    Marisha Wickremsinhe – University of Oxford, UK
  • Scoping review of ethics regulations for research on cognitively impaired adults in Sub-Saharan Africa (written governance paper, presentation)
    Aminu Yakubu – University of Ibadan, Nigeria
  • In search for a balance between empowering and protecting research participants with mental health conditions in Malaysia (written governance paper, presentation)
    Aimi Nadia Mohd Yusof – Universiti Teknologi MARA, Malaysia
  • Recommendations for interpreting Peru’s Clinical Trial Regulation in light of the CRPD and the CIOMS guidelines (written governance paper, presentation)
    Sarah Carracedo – National Institute of Health, Peru

 

Theme 5: Consent, decisional capacity and guardianship

  • Introduction to the theme
    David Wendler, Department of Bioethics, NIH Clinical Centre, USA
  • Research ethics challenges in a first episode of psychosis clinic in Latin America (written case study, presentation)
    Juan Undurraga – Clínica Alemana Universidad del Desarrollo, Chile
  • Ethical issues of involving people with mental health conditions who lacked capacity to consent in the TaSCS trial (written case study presentation)
    Hanna Negussie – Addis Ababa University, Ethiopia

 

Key themes panel discussion

  • Chair: Katherine Littler, World Health Organization, Switzerland
  • Theme 1 Dan Stein, University of Cape Town, South Africa
  • Theme 2Β Kaustubh Joag, Indian Law Society, India
  • Theme 3Β Eleni Misganaw, Global Mental Health Peer Network and Mental Health Service Users’ Association, Ethiopia
  • Theme 4Β Ana Palmero, Ministry of Health, Argentina
  • Theme 5 Ross Upshur, University of Toronto, Canada

Reports
A GFBR background paper was prepared in advance of the meeting and provides an overview of the key ethical issues raised by this important topic.

A meeting report will be available early 2022.

We are very interested to hear about participants’ post-meeting activities. Please do keep us up-to-date by emailing gfbr@wellcome.org.

 




Back to Past Meetings