Human tissue research ethics and consent models : global reflections in anatomical sciences

Abstract

BACKGROUND : Human tissue research has evolved to include three-dimensional (3-D) printing, genetic research, digital imaging of human tissue, plastination, and the public display of human tissue. This has resulted in several concerns about ethical acquisition, storage, and use of human tissue, particularly informed consent. This empirical study obtained the perspectives and viewpoints of anatomists and researchers across five countries on the ethical components of human tissue research. METHODS : Thirty in-depth Zoom interviews were conducted with participants from South Africa, the United States of America (USA), New Zealand, Germany, and France. Participants shared their perspectives and viewpoints on informed consent models, ethical challenges surrounding human tissue research, and existing gaps in policy guidelines. The data was analysed using thematic and content analysis. RESULTS : Participants (57 %) indicated that human tissue research on the living and deceased is ethically different; hence, requires separate policy guidelines and regulations. There was a clear preference for ‘broad consent’ and ‘fully informed consent’ when conducting research on living humans and using cadaveric tissue, respectively. Key ethical challenges and policy gaps were identified as contemporary human tissue research, commercialising human tissue, consent for foetal tissue, and using unconsented skeletal collections and unidentified bodies for human tissue research. CONCLUSIONS : This study highlights the moral complexity of contemporary human tissue research. It underscores the necessity for context-specific consent models and regulatory alignment for commercialisation and contemporary research uses of human tissue. Additionally, recommendations are provided to fill the policy gaps highlighted on consent models and ethical challenges in human tissue research.