Ethical Data Management and Sharing in UTx – Reflections and Recommendations

Williams, Nicola and Hammond-Browning, Natasha (2024) Ethical Data Management and Sharing in UTx – Reflections and Recommendations. In: International Legal and Ethical Perspectives on Uterus Transplantation :. Edward Elgar, Cheltenham. ISBN 9781803920481 (In Press)

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Abstract

In this chapter we explore the topic of data sharing in the context of uterus transplantation (UTx), and both the benefits and challenges that may arise from a commitment to data sharing in this arena. In section II we explore some of the benefits that may be produced through an open approach to data sharing and forward ethical arguments suggesting an obligation to share data absent compelling competing considerations. In section III, we outline several concerns that may be expressed regarding open data-sharing (e.g., worries regarding privacy, confidentiality, and fairness to researchers). In section IV we explain how data is currently shared by clinicians conducting research into UTx and discuss several concerns that may be raised regarding these practices. In section V we then discuss the way forward for data sharing in UTx, addressing the question of how data sharing practices may be improved in this context.