image

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.”


The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement