NEUROSEC

Sapfo Lignou

Position: Postdoctoral Researcher

University of Oxford Profile

Email: sapfo.lignou@psych.ox.ac.uk

Project(s): Wellcome Centre for Ethics and Humanities

I am a Researcher in the Ethics of Global Psychiatry at the Wellcome Centre for Ethics and Humanities and a member of the Neuroscience, Ethics and Society Team in the Department of Psychiatry. My research focuses on the ethics of new and emerging forms of research collaboration in global psychiatry. I explore ethical challenges presented by industry-academia collaborations in mental health research and on global collaborations in the context of neuropsychiatric genomics.

I studied Philosophy and Bioethics in Greece and then Philosophy, Politics and Economics of Health and Translational Clinical Science at UCL. I received a PhD in the Ethics of Community Effectiveness Research in Developing Countries from UCL.

My interests are in the ethics of health research on vulnerable populations, the assessment of research risk, and the communication and dissemination of research information, especially its role in the recruitment of trial participants.

Publications

  • Co-Production: An Ethical Model for Mental Health Research?

    View Abstract

  • Pharmaceutical industry, academia and people with experience of mental illness as partners in research: a need for ethical guidance

    View Abstract

    Background: Several social and policy developments have led to research partnerships in mental health research, which depart from traditional research models. One form of such partnerships is among Research institutions, Industry (pharmaceutical and biotech) and People with lived experience of mental illness (RIPs) in the NIHR services. There are several benefits but also challenges in such partnerships. An ethics-based approach to anticipating and addressing such problems is lacking. Given the expansion of RIPs in treatment development for mental health illness, guidance to support ethical and effective collaborations in NIHR-funded mental health research is essential. Methods: To develop a moral framework for evaluating the ethics of RIPs, we systematically searched PubMed for peer-reviewed literature discussing good practices in research partnerships. Searches were also conducted in websites of known organizations supporting patient engagement with industry in mental health research and in the references of short-listed articles. Following application of exclusion criteria, remaining articles were critically examined and summarised to synthesise principles for ethical RIPs and inform clear guidance and practices. Results: Critical analysis and synthesis of the short-listed articles highlighted the need for two sets of principles to guide ethical RIPs: principles for (a) RIPs as a trustworthy enterprise and (b) fair RIPs. We discuss the application of these principles in problem-solving strategies that can support best practice in establishing fair and effective research partnerships among research institutions, industry and people with lived experience of mental illness in the NIHR services. Conclusions: Ethical guidance is needed to prevent and address challenges in RIPs and to promote the scientific and social benefits of these new research partnership models in mental health research in the NIHR services. We show how the proposed moral framework can guide research partners in designing, sustaining and assessing ethical and effective mental health research collaborations.

  • Measuring the impact of participatory research in psychiatry: How the search for epistemic justifications obscures ethical considerations.

    View Abstract

    Context

    Both within politics and practice, the field of psychiatry is undergoing a significant transformation, as increasing emphasis is placed on the importance of involving those with lived experience in research. In response to this participatory turn, a push towards measuring the impact of patient involvement is also growing, seeking to identify how participation can improve research.

    Objective

    This paper examines the recent push towards measuring impact in relation to justifications underlying the democratization of research in psychiatry, revealing a disconnect between the two, and harms that could result from a singular focus on measuring impact.

    Discussion

    While those promoting and regulating participatory research tend to focus on the epistemic benefits of such research, many have pointed to both epistemic and ethical justifications underlying participatory research. The ethical reasons for involving service users loom especially large in psychiatry, given its unique history of abuse, the ways diagnoses can be utilized as tools for oppression, and the prevalence of coercion. The current focus on measuring the impact of involvement can be harmful, in that it obscures ethical reasons in favour of epistemic ones, potentially exacerbating issues common to participatory research, such as role confusion and ineffective, tokenistic participatory efforts.

    Conclusions

    We argue that to take the ethical reasons behind involvement in mental health research seriously will involve looking beyond impact and towards sharing power. We suggest three ways this can be done: measuring more than impact, building service user capacities and sharing power in realms outside of research.

  • Measuring the impact of participatory research in psychiatry: How the search for epistemic justifications obscures ethical considerations.

    View Abstract

    CONTEXT: Both within politics and practice, the field of psychiatry is undergoing a significant transformation, as increasing emphasis is placed on the importance of involving those with lived experience in research. In response to this participatory turn, a push towards measuring the impact of patient involvement is also growing, seeking to identify how participation can improve research. OBJECTIVE: This paper examines the recent push towards measuring impact in relation to justifications underlying the democratization of research in psychiatry, revealing a disconnect between the two, and harms that could result from a singular focus on measuring impact. DISCUSSION: While those promoting and regulating participatory research tend to focus on the epistemic benefits of such research, many have pointed to both epistemic and ethical justifications underlying participatory research. The ethical reasons for involving service users loom especially large in psychiatry, given its unique history of abuse, the ways diagnoses can be utilized as tools for oppression, and the prevalence of coercion. The current focus on measuring the impact of involvement can be harmful, in that it obscures ethical reasons in favour of epistemic ones, potentially exacerbating issues common to participatory research, such as role confusion and ineffective, tokenistic participatory efforts. CONCLUSIONS: We argue that to take the ethical reasons behind involvement in mental health research seriously will involve looking beyond impact and towards sharing power. We suggest three ways this can be done: measuring more than impact, building service user capacities and sharing power in realms outside of research.

  • Why research ethics should add retrospective review

    View Abstract

    Research ethics is an integral part of research, especially that involving human subjects. However, concerns have been expressed that research ethics has come to be seen as a procedural concern focused on a few well-established ethical issues that researchers need to address to obtain ethical approval to begin their research. While such prospective review of research is important, we argue that it is not sufficient to address all aspects of research ethics. We propose retrospective review as an important complement to prospective review. We offer two arguments to support our claim that prospective review is insufficient. First, as currently practiced, research ethics has become for some a ‘tick box’ exercise to get over the ‘hurdle’ of ethics approval. This fails to capture much of what is important in ethics and does not promote careful reflection on the ethical issues involved. Second, the current approach tends to be rules-based and we argue that research ethics should go beyond this to develop people’s capacity to be sensitive to the relevant moral features of their research, their ethical decision-making skills and their integrity. Retrospective review of a project’s ethical issues, and how they were addressed, could help to achieve those aims better. We believe that a broad range of stakeholders should be involved in such retrospective review, including representatives of ethics committees, participating communities and those involved in the research. All stakeholders could then learn from others’ perspectives and experiences. An open and transparent assessment of research could help to promote trust and understanding between stakeholders, as well as identifying areas of agreement and disagreement and how these can be built upon or addressed. Retrospective review also has the potential to promote critical reflection on ethics and help to develop ethical sensitivity and integrity within the research team. Demonstrating this would take empirical evidence and we suggest that any such initiatives should be accompanied by research into their effectiveness. Our article concludes with a discussion of some possible objections to our proposal, and an invitation to further debate and discussion.