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Accountability in Research
Ethics, Integrity and Policy
Volume 15, 2008 - Issue 4
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Original Articles

Disclosure Issues in Neuroscience Research

&
Pages 226-241 | Published online: 29 Oct 2008

References

  • Appelbaum , P. S. , Roth , L. H. and Lidz , C. W. 1982 . The therapeutic misconception: Informed consent in psychiatric research . International Journal of Law and Psychiatry , 5 : 319 – 329 .
  • Berg , J. W. , Appelbaum , P. S. , Parker , L. S. and Lidz , C. W. 2001 . Informed Consent: Legal Theory and Clinical Practice , Second , New York : Oxford University Press .
  • Beskow , L. M. 2006 . Considering the nature of individual research results . American Journal of Bioethics , 6 ( 6 ) : 38 – 40 .
  • Clayton , E. W. and Ross , L. F. 2006 . Implications of disclosing individual results of clinical research . JAMA , 295 ( 1 ) : 37 [letter]
  • Code of Federal Regulations. (CFR). Title 45. PUBLIC WELFARE. Department of Health and Human Services. National Institutes of Health. Office for Protection from Research Risks. Part 46. PROTECTION OF HUMAN SUBJECTS.
  • Dixon-Woods , M. , Jackson , C. , Windridge , K. C. and Kenyon , S. 2006 . Receiving a summary of the results of a trial: Qualitative study of participants' views . BMJ , 332 : 206 – 210 .
  • Emanuel , E. J. , Wendler , D. and Grady , C. 2000 . What makes clinical research ethical? . JAMA , 283 ( 20 ) : 2701 – 2711 .
  • Facio , F. M. 2006 . One size does not fit all . Am J Bioethcs , 6 ( 6 ) : 40 – 42 .
  • Fernandez , C. V. , Kodish , E. and Weiger , C. 2003 . Informing study participants of research results: An ethical imperative . IRB: Ethics & Human Research , 25 ( 3 ) : 12 – 19 .
  • Greene , J. D. , Sommerville , R. B. , Nystrom , L. E. , Darley , J. M. and Cohen , J. D. An fMRI investigation of emotional engagement in moral judgment . Science , 293 ( 5537 ) 2105 – 2108 .
  • Illes , J. , ed. 2006 . Neuroethics: Defining the Issues in Theory, Practice, and Policy , New York : Oxford University Press .
  • Illes , J. , Kirschen , M. P. , Edwards , E. , Bandettini , P. , Cho , M. K. , Ford , P. J. , Glover , G. H. , Kulynych , J. , Macklin , R. , Michael , D. B , Wolf , S. M. , Grabowski , T. and Seto , B. 2008 . Practical approaches to incidental findings in brain imaging research . Neurology , 70 ( 5 ) : 384 – 390 .
  • Illes , J. , Kirschen , M. P. , Edwards , E. , Stanford , L. R. , Bandettini , P. , Cho , M. K. , Ford , P. J. , Glover , G. H. , Kulynych , J. , Macklin , R. , Michael , D. B. and Wolf , S. M. 2006 . Incidental findings in brain imaging research . Science , 311 ( 5762 ) : 783 – 784 .
  • Illes , J. , Rosen , A. C. , Huang , L. , Goldstein , R. A. , Raffin , T. A. , Swan , G. and Atlas , S. W. 2004 . Ethical consideration of incidental findings on adult brain MRI in research . Neurology , 62 ( 6 ) : 888 – 890 .
  • Johnson , R. T. and Dickersin , K. 2007 . Publication bias against negative results from clinical trials: three of the seven deadly sins . Nature Clin Pract Neurology , 3 : 590 – 591 .
  • Kim , B. S. , Illes , J. , Kaplan , R. T. , Reiss , A. and Atlas , S. W. 2002 . Incidental findings on pediatric MR Images of the brain . American Journal of Neuroradiology , 23 ( 10 ) : 1674 – 1677 .
  • Klunk , W. E. , Engler , H. , Nordberg , A. , Wang , Y. , Blomqvist , G. , Holt , D. P. , Bergstrom , M. , Savitcheva , I. , Huang , G. F. , Estrada , S. , Ausen , B. , Debnath , M. L. , Barletta , J. , Price , J. C. , Sandell , J. , Lopresti , B. J. , Wall , A. , Koivisto , P. , Antoni , G. , Mathis , C. A. and Langstrom , B. 2004 . Imaging brain amyloid in Alzheimer's disease with Pittsburgh Compound-B . Ann Neurol , 55 ( 3 ) : 306 – 319 .
  • MacNeil , S. D. and Fernandez , C. V. 2006 . Offering results to research participants . BMJ , 332 : 188 – 189 .
  • Miller , F. A. , Christensen , R. , Giacomini , M. and Robert , J. S. 2008 . Duty to disclose what? Querying the putative obligations to return research results to participants . J Med Ethics , 34 ( 3 ) : 210 – 213 .
  • National Bioethics Advisory Commission. (NBAC) . 1999 . Research Involving Human Biological Materials: Ethical Issues and Policy Guidelines , Rockville , Md : National Bioethics Advisory Commission .
  • National Institute of Neurological Disorders and Stroke. (NINDS). (2005). Detection and Disclosure of Incidental Findings in Neuroimaging Research. Bethesda, MD, January 6–7. http://www.ninds.nih.gov/news_and_events/proceedings/ifexecsummary.htm (Accessed: 30 September 2008 ).
  • Ness , R. B. Joint Policy Committee, Societies of Epidemiology. (2007). Influence of the HIPAA privacy rule on health research . JAMA , 298 ( 18 ) 2164 – 2170 .
  • Parker , L. S. 2006a . Rethinking respect for persons enrolled in research . ASBH , 9 ( 2 ) : 1 6 – 7 .
  • Parker , L. S. 2006b . Best laid plans for offering results go awry . Am J Bioethics , 6 ( 6 ) : 22 – 23 .
  • Parker , L. S. 2008 . The future of incidental findings: Should they be viewed as benefits? . Journal of Law, Medicine & Ethics , 36 ( 2 ) : 341 – 351 .
  • Partridge , A. H. , Burstein , H. J. , Gelman , R. S. , Marcom , P. K. and Winer , E. P. 2003 . Do patients participating in clinical trials want to know study results? . JNCI J Natl Cancer Inst , 95 ( 6 ) : 491 – 492 . [letter]
  • Partridge , A. H. and Winer , E. P. 2002 . Informing clinical trial participants about study results . JAMA , 288 ( 3 ) : 363 – 365 .
  • Partridge , A. H. , Wong , J. S. , Knudsen , K. , Gelman , R. , Sampson , E. , Gadd , M. , Bishop , K. L. , Harris , J. R. and Winer , E. P. 2005 . Offering participants results of a clinical trial: sharing results of a negative study . Lancet , 365 : 963 – 964 .
  • Ravitsky , V. and Wilfond , B. S. 2006 . Disclosing individual genetic results to research participants . Am J Bioethics , 6 ( 6 ) : 8 – 17 .
  • Shalowitz , D. I. and Miller , F. G. 2005 . Disclosing individual results of clinical research: Implications of respect for persons . JAMA , 294 ( 6 ) : 737 – 740 .
  • Wolf , S. M. , Lawrenz , F. P. , Nelson , C. A. , Kahn , J. P. , Cho , M. K. , Clayton , E. W. , Fletcher , J. G. , Georgieff , M. K. , Hammerschmidt , D. , Hudson , K. , Illes , J. , Kaput , V. , Keane , M. A. , Koenig , B. A. , LeRoy , B. S. , McFarland , E. G. , Paradise , J. , Parker , L. S. , Terry , S. F. , Van Ness , B. and Wilfond , B. S. 2008 . Managing incidental findings in human subjects research: Analysis and recommendations. Incidental findings in human subject research . Journal of Law, Medicine & Ethics , 36 ( 2 ) : 219 – 249 .
  • Zarin , D. A. and Tse , T. 2008 . Moving toward transparency of clinical trials . Science , 319 ( 5868 ) : 1340 – 1342 .

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