GFBR 2021 seminar series

Ethical issues arising in research with people with mental health conditions

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, including links to the recordings.

Overview of the seminar series

SeminarTitleDateRegistration and recording links
1The impact of COVID-19 on mental health research practice: ethical issues   Mon 27 Sept  Watch now
2Equipping researchers to ethically involve people with mental health conditions in researchWed 13 OctWatch now
3Governance of research involving people with mental health conditions   Tues 26 Oct  Watch now
4The ethics of neurodevelopmental disorders researchTues 9 NovWatch now
5Mental health research involving adolescents – ethical issues Tues 23 NovAvailable soon

Seminar 1 – The impact of COVID-19 on mental health research: ethical issues

Monday 27 September 2021

This seminar was jointly held with the Epidemic Ethics seminar series

This seminar explored 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? 

Watch now: seminar recording.

Chair: Ross Upshur, University of Toronto, Canada

Panel:
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

The following questions formed the basis of the seminar’s panel discussion. 

  1. How has mental health research practice changed during the COVID-19 pandemic and what are the ethical implications (e.g. increased use of remote methods, the potential for high risk research to worsen a participant’s mental health at a time when reduced support is available from either the research team or external support services due to social distancing and other restrictions)?
  2. What counter-measures are required to balance the new ways of conducting research (e.g. the need for adequate (remote) mood assessment before and after a participant’s involvement in research)?
  3. Are the new ways of conducting research being picked up in the ethics review process?
  4. What should be done to ensure ethically robust mental health research in the time of COVID-19 (including the involvement of people with lived experience in research prioritisation and design)?

Background reading

Townsend E, Nielsen E, Allister R, Cassidy SA. Key ethical questions for research during the COVID-19 pandemic. Lancet Psychiatry. 2020 May;7(5):381-383. doi: 10.1016/S2215-0366(20)30150-4

Choudhury S, Ghosh A. Ethical Considerations of Mental Health Research Amidst COVID-19 Pandemic: Mitigating the Challenges. Indian Journal of Psychological Medicine. 2020;42(4):379-381. doi:10.1177/0253717620929097

Download the briefing note.


Seminar 2 – Equipping researchers to ethically involve people with mental health conditions in research

Wednesday 13 October 2021

This seminar drew 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)? 

Watch now: seminar recording

Chair: Jantina de Vries, University of Cape Town, South Africa

Panel: 
Violet Naanyu
, Moi University, Kenya
Eric Racine, Montreal Clinical Research Institute, Canada
Anna Chiumento, Liverpool University, UK

The following questions formed the basis of the seminar’s panel discussion.

  1. How do multiple intersectionality’s of the population you are working with and condition being researched shape the potential ethical issues that might arise, and how these might be responded to?
  2. Are tools and approaches that seek social justice aims of power sharing and giving an equal voice appropriate for settings with high levels of power disparities (e.g. between researchers and local communities)?
  3. Are tools that aim to increase researchers engagement with ethics and integrity accessible to global audiences and/or relevant to the specifics of mental health research?

Background reading

Reid, C, Calia, C, Guerra, C & Grant, L (2019). Ethical Action in Global Research: A Toolkit. The University of Edinburgh. www.ethical-global-research.ed.ac.uk

Research in Gender and Ethics https://ethicsresource.ringsgenderresearch.org/

Chiumento A, Rahman A, Frith, L. Writing to template: Researchers’ negotiation of procedural research ethics.
Social Science & Medicine 2020; 255. doi:
10.1016/j.socscimed.2020.112980

M. Ariel Casio & Eric Racine (eds.). Research Involving Participants with Cognitive Disability and Difference: Ethics, Autonomy, Inclusion, and Innovation. Oxford University Press (2019)

Download the briefing note.


Seminar 3 – Governance of research involving people with mental health conditions

Tuesday 26 October 2021 

International guidelines provide principles and values to guide research with people who have mental health problems. However, obstacles remain for implementation at a national level and achieving an ideal governance framework. 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 explored three LMIC case studies and highlighted the need for culturally sensitive mental health law and guidance and training for researchers and research ethics committees.

Watch now: seminar recording

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?
(download the governance paper)

Mercury Shitindo, Africa Bioethics Network and St Paul’s University, Kenya
 – Strengthening research capacity in mental health research in low and middle- income countries
(download the governance paper)

Haswira Nor, Universiti Teknologi MARA, Malaysia
 – Equity based research ethics governance model for the inclusion of people with mental health conditions in research
(download the governance paper)

The following questions formed the basis of the seminar’s panel discussion. 

  1. Does your country’s governance structure and regulation support or challenge the ability to conduct research involving people with mental health conditions?
  2. Are current ethics governance structures, processes and practices fit for purpose to support an equitable inclusion of people with mental health conditions in research, or do they lead to exclusion?
  3. What governance mechanisms should be in place to  guide and promote research involving people with mental health conditions?

Background reading

Council for International Organizations of Medical Sciences (CIOMS). International Ethical Guidelines for Health-related Research Involving Humans 2016

United Nations. Convention on the Rights of Persons with Disabilities (CRPD) 2006

Nilsson A, Broström L. Participation in Research and the CRPD. Int J Ment Heal Capacit Law. 2020;2019(25):3

Download the briefing note.


Seminar 4 – The ethics of neurodevelopmental disorders research

Tuesday 9 November 2021

The three presentations in this seminar explored 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.

Watch now: seminar recording

Chair: Sharon Kleintjes, University of Cape Town, South Africa 

Panel and presentations: 

Zsófia Szlamka, King’s College London, UK
 – Who has the right to empower? The case of caregivers of children with developmental disorders (download the case study)


Ruth Tsigebrhan, Addis Ababa University, Ethiopia
 – Exclusion criteria versus ethical principle of justice in conducting research in low-income settings (download the case study)

Ashok Mysore Visweswariah, St. John’s Medical College Hospital, India
 – The spectrum of challenges in conducting research for the early identification of Autism Spectrum Disorders
(download the case study)

The following questions formed the basis of the seminar’s panel discussion.

  1. How can we apply equitable distribution of research benefits to adults with NDDs in a low-income setting? For example, in  equal selection of participants, equal investigation of the health care needs or the outcomes of treatment of adult people with NDDs without unnecessary burden or abuse.
  2. How can we improve ethical engagement and participation of families and communities in NDD research? Research design and resourcing needs to support  participant understanding of and engagement in research in community settings, particularly when research findings have implications for clinical care.
  3. Who should decide on empowerment outcomes, and what is best for those to be empowered in NDD research? Experts may define this within the realms of their profession, while caregivers may feel knowledgeable about NDDs by experience. Contextual issues may also influence caregiver views on empowerment. When such different perspectives exist, whose knowledge and experience is taken as the baseline for empowerment through research?


Seminar 5 – Mental health research involving adolescents – ethical issues

Tuesday 23 November 2021 

This webinar explored the crucial question of adolescent mental health, and the research needed to improve young people’s access to appropriate services. An effective response to the high levels of mental ill-health among this age group in many LMICs is made harder by community stigma, low levels of service provision, and lack of research into culturally-appropriate interventions. Challenging ethical questions arise with respect to the role of adolescents themselves, both in influencing the research agenda to be responsive to their needs, and in their own choices about research participation. These issues need to be navigated in ways that are sensitive to cultural context, recognising both adolescents’ developing capacity to make their own decisions, and cultural approaches to decision-making within families and communities that may favour the collective over the individual. Further important ethical questions arise in the context of the relevance of the research to local needs, and the likelihood of research findings feeding into service improvements.

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) (download the case study)

Rakhshi Memon, University College London, UK
 – Ethical issues in Randomised Clinical Trials for Adolescents who Self-Harm: the limits of equipoise and evidence
(download the case study)

Pamela Garbus, Universidad Autónoma de Querétaro, Mexico
 – Research ethics in an epidemiological study of adolescent mental health in Mexico
(download the case study)

The following questions formed the basis of the seminar’s panel discussion.

  1. How can adolescents be meaningfully involved in research concerned with their mental health, in ways that are culturally appropriate?
  2. What are the ethical challenges in developing a ‘home-grown’ evidence base, eg by adapting interventions found to be effective in different cultural contexts?
  3. What role can digital technologies play in addressing the mental health needs of adolescents – and how can any associated ethical concerns be addressed?
  4. What is needed to help ensure that positive research findings are translated effectively into service improvements for adolescents – including those who are most marginalised?

Download the briefing note.