FIGURE 3-2 A framework for accessing archival tissues and clinical data for research. Reprinted by permission from Macmillan Publishers Ltd: Genetics in Medicine (Bathe and McGuire, 2009). Copyright 2009.
- Preventive consent should be considered if risks to privacy and stigmatization cannot be accurately predicted.
- “Data derived from unconsented patients should never be shared in a publicly accessible database. It may be permissible to share data in a database with controlled access. However, any future access to information or tissue from such a database mandates review by an ethics or data access committee.”