The Global Forum on Bioethics in Research (GFBR):
Ethical issues arising in research with people with mental health conditions
GFBR is the principal global platform for debate on ethical issues pertaining to international health research. Its core aims are to give voice to low- and middle- income country perspectives in debates about global health research ethics and to promote collaboration. The Forum meets annually to address a specific topic in research ethics and is case study based. Up to 100 participants attend each meeting, coming from a diverse range of disciplines, countries and career stages.
In the lead up to the annual GFBR meeting in November 2021, this seminar series provided an opportunity to discuss some of the key ethics and governance issues regarding mental health research. It also addressed the ethics of involving people with mental health problems in research more broadly. This background paper contains information about the GFBR theme and details for the individual seminars are below.
Seminar 1 - The impact of COVID-19 on mental health research: ethical issues
Monday 27 September 2021 | 1PM BST (GMT+1)
This seminar is jointly held with the Epidemic Ethics seminar series
This seminar will explore the ethics of how mental health research practice has changed due to the COVID-19 pandemic. Discussion will include the ethical implications of transferring face-to-face research online and what safeguards are needed to protect the wellbeing of participants at a time when support from the research team or external services may be reduced due to social distancing and other restrictions. How do we ensure ethically robust mental health research in the time of COVID-19 and how best can researchers involve people with lived experience in the design of research as it transitions to the digital world?
Chair: Ross Upshur, University of Toronto, Canada
Professor Ellen Townsend, Self-harm Research Group, University of Nottingham, UK
Dr Abhishek Ghosh, Postgraduate Institute of Medical Education & Research, India
Professor Jackie Hoare, Consultation–Liaison Psychiatry, University of Cape Town, South Africa
This briefing note contains the questions that will be explored during the discussion, and background reading | Download briefing note [PDF, 104kb]
Seminar 2 - Equipping researchers to ethically involve people with mental health conditions in research
Wednesday 13 October | 1PM BST (GMT+1)
This seminar will draw on researchers' personal and shared experiences to discuss the ethical challenges of involving people with mental health conditions in empirical research. What creative approaches have researchers used to ethically involve people who face multiple vulnerabilities and how do these vulnerabilities impact on the practicalities of the research process (e.g. consent and community engagement)?
Chair: Jantina de Vries, University of Cape Town, South Africa
Violet Naanyu, Associate Professor, Moi University, Kenya
Eric Racine, Research Unit Director, Montreal Clinical Research Institute, Canada
Anna Chiumento, Research Associate Primary Care & Mental Health, Liverpool University, UK
This briefing note contains the questions that will be explored during the discussion, and background reading | Download briefing notes [PDF, 144kb]
Access Person-oriented research ethics: integrating relational and everyday ethics in research, M. Ariel Cascio & Eric Racine
Access Writing to Template: Researchers' negotiation of procedural research ethics, Anna Chiumento
Seminar 3 - Governance of research involving people with mental health conditions
Tuesday 26 October | 1PM BST (GMT+1)
International guidelines provide principles to guide research with people who have mental health problems. However, obstacles remain for implementation at a national level. What are the challenges to ensuring people with mental health conditions have equitable access and opportunities to participate in research, and balancing protections to safeguard their rights and welfare? This seminar will explore three LMIC case studies and highlight the need for culturally sensitive mental health law and guidance and training for researchers and research ethics committees.
Chair: Ana Palmero, Ministry of Health, Argentina
Panel and presentations:
Margaret Ojeahere, Jos University Teaching Hospital, Nigeria
- Governance in bioethics and mental health research in Nigeria: Are we there yet?
Mercury Shitindo, St Paul's University, Kenya
- Strengthening research capacity in mental health research in low and middle- income countries
Haswira Nor, Universiti Teknologi MARA, Malaysia
- Equity based research ethics governance model for the inclusion of people with mental health conditions in research
This briefing note contains the questions that will be explored during the discussion, and background reading | Download briefing notes [PDF, 163kb]
Seminar 4 - The ethics of neurodevelopmental disorders research
Tuesday 9 November | 1PM GMT
The three presentations in this seminar explore ethical issues in the study design and engagement of participants with neurodevelopmental disorders and their families in research to inform service development and delivery in low- and middle-income public health and community settings.
Chair: Sharon Kleintjes | University of Cape Town, South Africa
Panel and presentations:
Ruth Tsigebrhan | Addis Ababa University, Ethiopia
- Exclusion criteria versus ethical principle of justice in conducting research in low-income settings
Zsófia Szlamka | King’s College London, UK
- Who has the right to empower? The case of caregivers of children with developmental disorders
Ashok Mysore | St. John’s Medical College Hospital, India
- The spectrum of challenges in conducting research for the early identification of Autism Spectrum Disorders
This briefing note contains the questions that will be explored during the discussion, and background reading | Download briefing notes [PDF, 11kb]
Seminar 5 - Mental health research involving adolescents
Tuesday 23 November | 1PM GMT
An effective response to the high levels of mental ill-health among adolescents in many LMICs is made harder by community stigma, poor access to services, and lack of research into culturally-appropriate interventions. Challenging ethical questions arise with respect to the relevance of research to local needs, the likelihood of research findings feeding into service improvements, and the role of adolescents themselves both in influencing research agendas and in decisions about their own research participation.
Chair: Katharine Wright, Nuffield Council on Bioethics, UK
Panel and presentations:
Pallab Maulik, George Institute for Global Health, India
- Adolescents’ resilience and treatment needs for mental health in Indian slums (ARTEMIS)
Rakhshi Memon, University College London, UK
- Ethical issues in Randomised Clinical Trials for Adolescents who Self-Harm: the limits of equipoise and evidence
Pamela Garbus, Universidad Autónoma de Querétaro, Mexico
- Research ethics in an epidemiological study of adolescent mental health in Mexico
This briefing note contains the questions that will be explored during the discussion, and background reading | Download briefing note [PDF, 134kb]