Chunk #42 — PART II. CORE QUESTIONS — D. If Data and Samples Can Be Re-identified, Are There Any Biobank Research System Responsibilities to Offer Return of IFs and IRRs? — The ethics of return in biobank research systems
Privately funded biobanks (such as a biobank funded and created by a pharmaceutical company) bear some public responsibilities as well. ISBER’s Best Practices70(p49) maintain that biobanks need to provide responsible “custodianship” of the tissues and data they collect, maintain, and share. And private biobanks owe duties to those individuals generous enough to participate by donating data or samples.71,72 Biobanks -- private and public -- commonly have a range of committees and governance structures to address operational and ethics issues including access to data and samples by secondary researchers.26,70,73
