Hostname: page-component-586b7cd67f-r5fsc Total loading time: 0 Render date: 2024-12-04T09:19:20.610Z Has data issue: false hasContentIssue false
  • English
  • Français

The Past, Present, and Future of Informed Consent in Research and Translational Medicine

Published online by Cambridge University Press:  01 January 2021

Susan M. Wolf ,
Ellen Wright Clayton  and
Frances Lawrenz
Get access Rights & Permissions [Opens in a new window]

Abstract

An abstract is not available for this content so a preview has been provided. Please use the Get access link above for information on how to access this content.
Image of the first page of this content. For PDF version, please use the ‘Save PDF’ preceeding this image.'
Type
Symposium Articles: Introduction
Information
Journal of Law, Medicine & Ethics , Volume 46 , Issue 1: The Future of Informed Consent in Research & Translational Medicine: A Century of Law, Ethics & Innovation , Spring 2018 , pp. 7 - 11
Copyright
Copyright © American Society of Law, Medicine and Ethics 2018

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Schloendorff v. New York Hospital, 211 N.Y. 125, 129 (1914).Google Scholar
Compare Dickert, N. W. et al., “Reframing Consent for Clinical Research: A Function-Based Approach, American Journal of Bioethics 17, no. 12 (2017): 3–11, with T. L. Beauchamp, “The Idea of a ‘Standard View’ of Informed Consent,” American Journal of Bioethics 17, no. 12 (2017): 1-2.Google Scholar
See, e.g., Annas, G. J., “Informed Consent: Charade or Choice?,” Journal of Law, Medicine & Ethics 45, no. 1 (2017): 10–11; L. M. Beskow, L. Lin, C. B. Dombeck, E. Gao, and K. P. Weinfurt, “Improving Biobank Consent Comprehension: A National Randomized Survey to Assess the Effect of a Simplified Form and Review/Retest Intervention,” Genetics in Medicine 19, no. 5 (2017): 505-512.CrossRefGoogle Scholar
See, e.g., Bracken-Roche, D., Bell, E., Macdonald, M. E., and Racine, E., “The Concept of ‘Vulnerability’ in Research Ethics: An In-Depth Analysis of Policies and Guidelines,” Health Research Policy and Systems 15, no. 8 (2017): DOI 10.1186/s12961-016-0164-6, available at <https://health-policy-systems.biomedcentral.com/articles/10.1186/s12961-016-0164-6> (last visited January 10, 2018).Google Scholar
See, e.g., Grady, C., Cummings, S. R., Rowbotham, M. C., McConnell, M. V., Ashley, E. A., and Kang, G., “Informed Consent,” New England Journal of Medicine 376, no. 9 (2017): 856–867; E. E. Anderson, S. B. Newman, and A. K. Matthews, “Improving Informed Consent: Stakeholder Views,” AJOB Empirical Bioethics 8, no. 3 (2017): 178-188.Google Scholar
See, e.g., Kalkman, S., Kim, S. Y. H., van Thiel, G. J. M. W., Grobbee, D. E., and Delden, J. J. M., “Ethics of Informed Consent for Pragmatic Trials with New Interventions,” Value in Health 20, no. 7 (2017): 902–908.Google Scholar
See, e.g., Henderson, G. E. et al., “The Challenge of Informed Consent and Return of Results in Translational Genomics: Empirical Analysis and Recommendations,” Journal of Law, Medicine & Ethics 42, no. 3 (2014): 344–355.Google Scholar
National Institutes of Health, All of Us Research Program, available at <https://allofus.nih.gov/> (last visited January 10, 2018).+(last+visited+January+10,+2018).>Google Scholar
Oxford Living Dictionaries, “consent,” available at <https://en.oxforddictionaries.com/definition/consent> (last visited January 10, 2018).+(last+visited+January+10,+2018).>Google Scholar
Online Etymology Dictionary, “consent,” available at <https://www.etymonline.com/word/consent> (last visited January 10, 2018).+(last+visited+January+10,+2018).>Google Scholar
Schloendorff v. New York Hospital, 211 N.Y. 125 (1914).Google Scholar
Lombardo, P. A., “Phantom Tumors and Hysterical Women: Revising our View of the Schloendorff Case,” Journal of Law, Medicine & Ethics 33, no. 4 (2005): 791–801.Google Scholar
Katz, J., The Silent World of Doctor and Patient (New York: Free Press, 1984).Google Scholar
Salgo v. Leland Stanford Jr. University Board of Trustees, 154 Cal.App.2d 560.Google Scholar
Capron, A. M., “Where Did Informed Consent for Research Come From?” Journal of Law, Medicine & Ethics 46, no. 1 (2018): 12–29.CrossRefGoogle Scholar
Gehlert, S. and Mozersky, J., “Seeing Beyond the Margins: Challenges to Informed Inclusion of Vulnerable Populations in Research,” Journal of Law, Medicine & Ethics 46, no. 1 (2018): 30–43.Google Scholar
Henderson, J. N., “Personal Experiences with Tribal IRBs, Hidden Hegemony of Researchers, and the Need for an Inter-cultural Approach: Views from an American Indian Researcher,” Journal of Law, Medicine & Ethics 46, no. 1 (2018): 44–51.CrossRefGoogle Scholar
Lamkin, M. and Elliott, C., “Avoiding Exploitation in Phase I Clinical Trials: More than (Un)Just Compensation,” Journal of Law, Medicine & Ethics 46, no. 1 (2018): 52–63.CrossRefGoogle Scholar
Porter, A. S. and Kodish, E., “The Ethics of Using Complementary Medicine in Pediatric Oncology Trials: Reconciling Challenges,” Journal of Law, Medicine & Ethics 46, no. 1 (2018): 64–71.CrossRefGoogle Scholar
Biros, M. H., “Capacity, Vulnerability, and Informed Consent for Research,” Journal of Law, Medicine & Ethics 46, no. 1 (2018): 72–78.CrossRefGoogle Scholar
Burke, W., Beskow, L. M., Trinidad, S. B., Fullerton, S. M., and Brelsford, K., “Informed Consent in Translational Genomics: Insufficient Without Trustworthy Governance,” Journal of Law, Medicine & Ethics 46, no. 1 (2018): 79–86.CrossRefGoogle Scholar
Wolf, S. M., Scholtes, E., Koenig, B. A., Petersen, G. M., Berry, S. A., Beskow, L. M., Daly, M. B., Fernandez, C. V., Green, R. C., LeRoy, B. S., Lindor, N. M., O'Rourke, P. P., Breitkopf, C. R., Rothstein, M. A., Van Ness, B., and Wilfond, B. S., “Pragmatic Tools for Sharing Genomic Research Results with the Relatives of Living and Deceased Research Participants,” Journal of Law, Medicine & Ethics 46, no. 1 (2018): 87–109.CrossRefGoogle Scholar
Wilbanks, J., “Design Issues in E-Consent,” Journal of Law, Medicine & Ethics 46, no. 1 (2018): 110–118.Google Scholar
Vayena, E. and Blasimme, A., “Health Research with Big Data: Time for Systemic Oversight,” Journal of Law, Medicine & Ethics 46, no. 1 (2018): 119–129.Google Scholar