Sapfo Lignou


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

  • 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.

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

    View Abstract

    In this commentary we argue for the value of involving people with a diagnosis of mental health disorders and/or their caregivers as co-researchers in mental health research. We claim that co-production shares key ethical values with the citizen science approach, such as the acknowledgment of the right of citizens to manage their own care and the value of “expertise by experience.” These values are especially important in a mental health context and should not be overlooked. Moreover, we argue that research collaborations involving people with a diagnosis of mental health disorders and/or their caregivers avoid certain important ethical challenges posed by some citizen science models, such as the need to develop a different model of ethical oversight

  • Review and revision of the Research for Humanitarian Crises (R2HC) Ethics Framework

    View Abstract

    In late 2016, Elrha commissioned a review, revision and update of the R2HC Ethical Framework by Curry, Waldman and Caplan. The revision and update consisted of: a desk-based review of the existing framework and feedback on its use, a literature review, an online survey and a stakeholder consultation. Based on cumulative findings from this work, a revised and updated framework is proposed here. This new framework was developed to provide: a) ethical guidance specifically for humanitarian health research, but with wider relevance for other humanitarian research and potentially even humanitarian practice; b) a tool which encourages reflection, inductive and deliberative thinking and proactive response to ethical issues that arise in developing protocols, reviewing proposals and conducting humanitarian health research; c) interconnected, overlapping and repeated opportunities for reflection on ethical challenges based on an assumption that these reflections are guided by context specific factors; d) a tool which has been developed through a firm grounding of the belief that reflection on ethical issues should be done throughout research projects, including before, during and after the research; e) a user-friendly, stand-alone tool, easily detachable from other accompanying literature. T he new version of the R2HC Ethics Framework is graphically presented as a series of ‘steps’ without any hierarchical relationships. An explanatory section precedes the graphical framework to act as guidance for its usage and formative structure.

  • Current model infrastructure and responsivity

    View Abstract

    The purpose of the narrative reviews was to explore key issues of children’s primary care focusing specifically on the primary-secondary care interface and its impact on the quality, safety and timeliness of care.