Allying with donors to link health and medical information with stem cell lines can advance disease modeling while enhancing data access

摘要

A fundamental concern in disease modeling with stem-cell-derived cells is the need to connect information about cellular and tissue dysfunction in the lab with the manifestation of pathologies in individuals. To do this precisely necessitates linking personally identifiable information about individual patients, including medical records, biosensor data, and other potentially sensitive personal health information (PHI), to stem cell lines made from their donated tissue. Linking rich phenotypic data with stem cell lines, however, comes with a risk of informational harm, should donor anonymity be breached. To address this risk, the International Stem Cell Forum's Ethics Working Party (ISCF EWP) recently made recommendations for protecting donor-specific data (Isasi et al., 2014). Although we agree with the spirit of the recommendations, we argue that an alternative approach that actively engages donors would be better able to resolve data access issues while advancing disease modeling science.