<< Previous Section | < Previous Page | Next Page > | Next Section >> Bibliography (page 7 of 11) Daugherty, C. K. (1999). "Impact of Therapeutic Research on Informed Consent and the Ethics of Clinical Trials: A Medical Oncology Perspective." J Clin Oncol 17(5): 1601-.       The author provides a thoughtful historical review of "informed consent" with emphasis on oncology studies. He finds great weakness in the process, in the written consent and in the involvement of the physicians. This is an important article to review as it provides an excellent historical review of studies of the consent process as well as his analysis. http://www.jco.org/cgi/content/full/17/5/1601 Corbie-Smith, G., S. B. Thomas, et al. (1999). "Attitudes and Beliefs of African Americans Toward Participation in Medical Research." Journal of General Internal Medicine 14(9): 537-546.       This focus group study of African Americans in 1997 demonstrated mistrust of scientists, doctors, and government. The participants reported feelings of exploitation of poor or minority patients. Even though they didn't understand it they knew that Tuskegee was wrong. They understand informed consent as giving up their autonomy. They did support the need for research in minorities. http://www.blackwell-synergy.com/doi/abs/10.1046/j.1525-1497.1999.07048.x Eriksson, S. and G. Helgesson (2005). "Keep people informed or leave them alone? A suggested tool for identifying research participants who rightly want only limited information." J Med Ethics 31(11): 674-678.       This paper notes that some research participants fail to understand the study in which they are enrolled because it is their choice while for others it is the lack of adequate information. They argue that the appropriate responses to each of these is different. They suggest confronting the issue by asking a few questions about the potential subjects' beliefs and attitudes. http://jme.bmjjournals.com/cgi/content/full/31/11/674 Agre, P., F. Campbell, et al. (2003). "Improving informed consent: the medium is not the message." IRB 25(5): S11-19.       The authors reviewed the literature for studies addressing the question of whether augmentation of standard consent forms with videos, computer software, or enforced written material has a positive impact in subjects understanding of the protocol and willingness to volunteer. They actually review the 8 studies found addressing the subject. Although they were relatively negative, the studies showed variable improvement -- depending! Arnason, V. (2004). "Coding and Consent: Moral Challenges of the Database Project in Iceland." Bioethics 18(1): 27-49.       This paper reviews the Icelandic medical, genealogical, and genetic databases, their linkages, and the requirements for individual informed consents in relation to societal consents. The author recommends an individual written authorization rather than a standard consent and "pressured consent" in database research. http://www.blackwell-synergy.com/doi/abs/10.1111/j.1467-8519.2004.00377.x Kegley, J. (2004). "Challenges to informed consent." EMBO reports 5(9): 832-6.       Genetic research and stem cell research have raised new questions about the sufficiency of informed consent based on individuals. This paper reviews a number of these questions but does not try to resolve them. http://www.pubmedcentral.gov/articlerender.fcgi?tool=pubmed&pubmedid=15470376 Gill, D. (2003). "Guidelines for informed consent in biomedical research involving paediatric populations as research participants." European Journal of Pediatrics 162(7 - 8): 455.       This report of the Ethics Working Group of the Confederation of European Specialists in Paediatrics delineates their guidelines for informed consent involving children. It involves respect for the dignity of the child, safeguarding the best interests of the child, protecting the child from harm, and assuring and protecting the privacy and confidentially of the child. http://www.springerlink.com/openurl.asp?genre=article &id=doi:10.1007/s00431-003-1192-0 << Previous Section | < Previous Page | Next Page > | Next Section >> Chapter 2 Quick Links Research in Humans History of Rules About Research in Humans Definitions Federal Mandate Respect for Persons Beneficence Justice Common Rule IRB Mission Cases Bibliography Chapter 2 Download (PDF)