Angeliki Kerasidou, Senior Fellow at Ethox, has contributed a chapter to a new open access resource – the Cambridge Handbook of Health Research Regulation (2021).
Angeliki’s chapter, Trustworthy institutions in global health research collaborations, provides an account of what it means for an institution to be trusted and be trustworthy in the context of global health research. It uses the example of data sharing to illustrate the importance and value of trustworthiness as an institutional moral characteristic.
Angeliki concludes that trust is important in global health research collaboration because of the power imbalance between partners that often characterises such collaborations. In order to promote trust, institutions need to focus on being trustworthy by developing a behaviour that corresponds to the aims, principles and values they profess to uphold, and by demonstrating that they have incorporated into their functions, rules and regulations the particular needs of their partners and collaborators.
The Cambridge Handbook on Health Research Regulation (2021) is a final major output of Liminal Spaces, a six-year Wellcome-funded project at Edinburgh Law School.
This resource brings together contributions from experts across the globe to provide the first ever interdisciplinary handbook in the field. It offers wide-ranging analysis of health research regulation and the chapters confront gaps between documented law and research in practice, and draw on legal, ethical and social theories about what counts as robust research regulation to make recommendations for future directions.
The Handbook provides an account and analysis of current regulatory tools - such as consent to participation in research and the anonymization of data to protection participants' privacy - as well as commentary on the roles of the actors and stakeholders who are involved in human health research and its regulation.
Drawing on a range of international examples of research using patient data, tissue and other human materials, the collective contribution of the volume is to explore current challenges in delivering good medical research for the public good and to provide insights on how to design better regulatory approaches.