Our research seeks to identify appropriate legal and governance frameworks for emerging technologies that have the potential to transform, or disrupt, healthcare and medicine. HeLEX uses an interdisciplinary approach, incorporating methods of investigation and analysis from legal scholarship and the social sciences, with a commitment to public and patient engagement and outreach. Our aim is to support societally responsible innovation that engages with and responds to the needs and concerns of multiple stakeholders, meets its legal obligations, and gives due consideration to the public interest and the needs of future generations.

                                                                          

Publications

  • Prictor, M., Lewis M.A., Newson, A. J. and J Kaye, 'Dynamic Consent: An Evaluation and Reporting Framework' (2020) Journal of Empirical Research on Human Research Ethics
    DOI: 10.1177/1556264619887073
    Dynamic consent (DC) is an approach to consent that enables people, through an interactive digital interface, to make granular decisions about their ongoing participation. This approach has been explored within biomedical research, in fields such as biobanking and genomics, where ongoing contact is required with participants. It is posited that DC can enhance decisional autonomy and improve researcher–participant communication. Currently, there is a lack of evidence about the measurable effects of DC-based tools. This article outlines a framework for DC evaluation and reporting. The article draws upon the evidence for enhanced modes of informed consent for research as the basis for a logic model. It outlines how future evaluations of DC should be designed to maximize their quality, replicability, and relevance based on this framework. Finally, the article considers best-practice for reporting studies that assess DC, to enable future research and implementation to build upon the emerging evidence base.