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Patients' Views on Identifiability of Samples and Informed Consent for Genetic Research

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Pages 62-70 | Published online: 17 Nov 2008

REFERENCES

  • 1991 . Federal Policy for the Protection of Human Subjects 45CFR46.101(b)(4)
  • 1991 . Federal Policy for the Protection of Human Subjects 45CFR46.102(f)(2)
  • 1991 . Federal Policy for the Protection of Human Subjects 45CFR46.117(c)
  • 2000 . Standards for Privacy of Individually Identifiable Health Information; Final Rule 45CFR160.103.
  • 2000 . Standards for Privacy of Individually Identifiable Health Information; Final Rule 45CFR164.502(d)(2), 164.514(a) and (b)
  • American College of Medical Genetic Storage of Genetic Materials Committee . 1995 . ACMG statement on storage and use of genetic materials . American Journal of Human Genetics , 57 : 1499 – 1500 .
  • American Society of Human Genetics . 1996 . Statement on informed consent for genetic research . American Journal of Medical Genetics , 59 : 473
  • Clayton , E. , Steinberg , K. K. Khoury , M. J. 1995 . Informed consent for genetic research on stored tissue samples . JAMA Journal of the American Medical Association , 274 : 1786 – 1792 .
  • Grizzle , W. , Grody , W. and Noll , W. 1999 . Recommended policies for uses of human tissue in research, education, and quality control . Arch Pathol Lab Med , 123 : 296 – 300 .
  • Hoeyer , K. , Olofsson , B. O. Mjörndal , T. 2004 . Informed consent and biobanks: A population-based study of attitudes towards tissue donation for genetic research . Scandinavian Journal of Public Health , 32 : 224 – 229 .
  • Hull , S. C. , Gooding , H. Klein , A. P. 2004 . Genetic research involving human biological materials: A need to tailor consent forms . IRB: Ethics & Human Research , 26 ( 3 ) : 1 – 7 .
  • Jack , A. L. and Womack , C. 2003 . Why surgical patients do not donate issue for commercial research: Review of records . BMJ , 327 : 262
  • Lin , Z. , Owen , B. and Altman , R. B. 2004 . Genomic research and human subject privacy . Science , 305 : 183
  • Lowrance , W. W. and Collins , F. S. 2007 . Identifiability in genomic research . Science , 317 : 600
  • McCabe , E. , Biesecker , L. and Cassidy , S. 1996 . ASHG Report: Statement on Informed Consent for Genetic Research . American Journal of Human Genetics , 59 : 471 – 474 .
  • McGuire , A. L. and Gibbs , R. A. Genetics. No longer de-identified . Science , 312 ( 5772 ) 370 – 371 .
  • McQuillan , G. M. , Porter , K. S. Agelli , M. 2003 . Consent for genetic research in a general population: The NHANES experience . Genetics in Medicine , 5 ( 1 ) : 35 – 42 .
  • McWilliams , R. , Hoover-Fong , J. Hamosh , A. 2003 . Problematic variation in local institutional review of a multicenter genetic epidemiology study . Journal of the American Medical Association , 290 : 360
  • National Bioethics Advisory Commission . 1999 . Research Involving Human Biological Materials: Ethical Issues and Policy Guidance , Rockville, MD : National Bioethics Advisory Commission .
  • Office for Human Research Protections (OHRP) . 2004 . Guidance on Research Involving Coded Private Information or Biological Specimens Available at: http://www.hhs.gov/ohrp/humansubjects/guidance/cdebiol.htm (accessed February 20, 2008)
  • Pulley , J. M. , Brace , M. M. Bernard , G. R. 2008 . Attitudes and perceptions of patients towards methods of establishing a DNA biobank . Cell Tissue Bank , 9 ( 1 ) : 55 – 65 .
  • Ravitsky , V. and Wilfond , B. S. 2006 . Disclosing individual genetic results to research participants . American Journal of Bioethics , 6 ( 6 ) : 8 – 17 .
  • Reilly , P. R. and Holtzman , S. H. 1997 . Ethical issues in genetic research: Disclosure and informed consent . Nature Genetics , 15 : 17
  • Schwartz , M. D. , Rothenberg , K. Joseph , L. 2001 . Consent to the use of stored DNA for genetics research: A survey of attitudes in the Jewish population . American Journal of Medical Genetics , 98 : 336 – 342 .
  • Wang , S. S. , Fridinger , F. Sheedy , K. M. 2001 . Public attitudes regarding the donation and storage of blood specimens for genetic research . Community Genetics , 4 : 18 – 26 .
  • Wendler , D. 2002 . What research with stored samples teaches us about research with human subjects . Bioethics , 16 ( 1 ) : 33 – 54 .
  • Wendler , D. and Emanuel , E. 2002 . The debate over research on stored biological samples: What do sources think? . Archives of Internal Medicine , 162 : 1457 – 1462 .
  • White , M. and Gamm , J. 2002 . Informed consent for research on stored blood and tissue samples: A survey of institutional review board practices . Accountability in Research , 9 : 1 – 16 .

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