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Authors: Kodish, Eric
Publication Type: Case Study
Abstract: A scenario that covers ethical issues that arise when children are reluctant to continue participation in research studies....
Year: 2000
URL: http://www.onlineethics.org/CMS/2963/modindex/resethpages/conobl2.aspx

Biblio - KBL781 - 2009-08-13 09:30

Commercialization

Authors: Murray, Thomas H.
Publication Type: Case Study
Abstract: Should donors of human biological material for research be told of the potential profits companies and researchers may gain from this research?...
Year: 2006
URL: http://www.onlineethics.org/CMS/2963/modindex/resethpages/commercialization.aspx

Biblio - KBL781 - 2009-08-13 09:28

The Orphan Embryos : A Case Study in Bioethics

Authors: Whittaker, Peter ; Santos, Heloisa G. dos ; Sakaguchi, Donald ; Pareja, Enrique ; Gouvenia, Maria M. C.
Publication Type: Case Study
Abstract: Mr. and Mrs. Smith went through in vitro fertilization a number of years ago and had a number of viable embryos kept frozen at their local hospital. A year later, both of the Smiths were killed in an automobile accident. Now, a re...
Year: 2004
URL: http://www.bioethics.iastate.edu/classroom/orphanembryos.html

Biblio - KBL781 - 2009-08-26 13:12

Informed consent in the Childrens Cancer Group: results of preliminary research.

Authors: Pentz, RD ; Kodish, ED ; Ruccione, K ; Buckley, J ; Noll, RB ; Lange, BJ
Publication Type: Journal Article
Secondary Title: Cancer
Abstract: The authors of this article studied the informed consent process and parents' and physicians reactions to this process at Children's Cancer Centers around the United States. Of parents interviewed about the informed consensus proje...
Year: 1998
URL: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=9635541
DOI: 10.1002/(SICI)1097-0142(19980615)82

Biblio - KBL781 - 2009-09-14 13:09

Ethical and regulatory aspects of clinical research : readings and commentary

Authors: Emanuel, Ezekiel J.
Publication Type: Book
Abstract: A collection of essays including the following: U.S. medical researchers, the Nuremberg doctors trial, and the Nuremberg Code: a review of findings of the Advisory Committee on Human Radiation Experiments -- The Jewish Chronic Dise...
Year: 2003

Biblio - KBL781 - 2009-10-08 14:09

Hepatitis Studies at the Willowbrook State School for Children with Mental Retardation

Authors: DuBois, James M.
Publication Type: Case Study
Abstract: From 1956 through 1971, residents at the Willowbrook State School for Children with Mental Retardation were infected with live hepatitis in order to develop a vaccine. Parents gave permission for their children to participate in thi...
Year: 2004
URL: http://www.emhr.net/index.php?mact=casestudies,cntnt01,default,0&cntnt01what=studie&cntnt01alias=Hepatitis-Studies-at-the-Willowbrook-State-School-for-Children&cntnt01returnid=64

Biblio - KBL781 - 2009-11-19 10:56

The Tuskegee Syphilis Study

Authors: DuBois, James M.
Publication Type: Case Study
Abstract: From 1932 through 1972, the U.S. Public Health Service enrolled African-American men in a non-therapeutic research study to observe the natural course of syphilis. Subjects were not told they had syphilis, nor were they treated for ...
Year: 2004
URL: http://www.emhr.net/index.php?mact=casestudies,cntnt01,default,0&cntnt01what=studie&cntnt01alias=The-Tuskegee-Syphilis-Study&cntnt01returnid=64

Biblio - KBL781 - 2009-11-19 10:51

Shading the Truth in Seeking Informed Consent for Research Purposes

Authors: Bok, Sissela
Publication Type: Journal Article
Secondary Title: Kennedy Institute of Ethics Journal
Abstract: The author argues that what some researchers take to be a simple trade-off between minor violations of the truth in recruiting research participants, represents a profound miscalculations with far-reaching and cumulative ethical iss...
Year: 1995
DOI: 10.1353/ken.0.0116

Biblio - KBL781 - 2010-04-29 13:35

Rethinking informed consent in bioethics

Authors: O'Neill, Onora ; Manson, Neil C.
Publication Type: Book
Abstract: The authors of this volume look at the issue of trying to set defensible and feasible standards for informed consent in research. They look at the reasons why informed consent cannot be fully specific or fully explicit, and why more...
Year: 2007
URL: http://www.loc.gov/catdir/enhancements/fy0803/2007280642-t.html

Biblio - KBL781 - 2010-04-29 13:34

The many ways of saying yes and no: reflections on the research coordinator's role in recruiting research participants and obtaining informed consent.

Authors: Huntington, Ian ; Robinson, W
Publication Type: Journal Article
Secondary Title: IRB
Abstract: This article contains a qualitative report and reflections of a research coordinator working on recruiting research participants for two minimal risk studies involving children and adults with cystic fibrosis. She discusses the cha...
Year: 2007
URL: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=17847636

Biblio - KBL781 - 2010-04-29 13:34

Do Ethical Guidelines Give Guidance? A Critical Examination of Eight Ethics Regulations

Authors: H ; Eriksson, Stefan ; Helgesson, Gert
Publication Type: Journal Article
Secondary Title: Cambridge Quarterly of Healthcare Ethics
Abstract: As an example of how biomedical legislations and guidelines are not very useful tools for the development of ethical competence, the author looks at eight ethical guidelines on obtaining informed consent and shows how complications ...
Year: 2008
DOI: 10.1017/S0963180108080031

Biblio - KBL781 - 2010-04-29 13:33

Shading the truth in seeking informed consent for research purposes.

Biblio - KBL781 - 2010-04-29 13:32

Beyond consent : seeking justice in research

Authors: Kahn, Jeffrey P. ; Mastroianni, Anna C. ; Sugarman, Jeremy
Publication Type: Book
Abstract: Surveying the history of the use of human participants in research, this book examines aspects of justice in research. The author looks at the need to expand access to potentially beneficial research to all members of society, conc...
Year: 1998
URL: http://www.loc.gov/catdir/enhancements/fy0604/97044169-t.html

Biblio - KBL781 - 2010-05-07 11:20

When Embryonic Stem Cell Lines Fail to Meet Consent Standards

Authors: Sugarman, Jeremy ; Siegel, Andrew W.
Publication Type: Journal Article
Secondary Title: Science
Abstract: This article reports on embryonic stem cell research. It discusses that a review regarding the consent documents for obtaining the embryos used to create the human embryonic stem cell lines approved for federal funding in the U.S. s...
Year: 2008
DOI: 10.1126/science.1164441

Biblio - KBL781 - 2010-06-15 11:53

Strategies for Consulting with the Community: The Cases of Four Large-Scale Genetic Databases

Authors: Godard, B. ; Laberge, C. ; Marshall, J.
Publication Type: Journal Article
Secondary Title: Science and Engineering Ethics
Abstract: This paper is a review of how three different research projects went about gaining community support and permission to produce large scale genetic databases. The Iceland Health Sector Database and Estonian Genome Project have follow...
Year: 2004

Biblio - KBL781 - 2009-07-13 15:20

The Informed Consent Process in a Rural African Setting: A Case Study of the Kassena Nankana District of Northern Ghana

Authors: Tindana, Paulina Onvomaha ; Kass, Nancy E. ; Akweongo, Patricia
Publication Type: Journal Article
Secondary Title: IRB: Ethics & Human Research
Abstract: The article presents a case study on the influence of community leaders and household heads on individuals’ decisions to participate in research in the Kassena-Nankana District of Northern Ghana. The authors describe that the primar...
Year: 2006

Biblio - KBL781 - 2010-09-28 14:28

Improving the Quality of Informed Consent to Research

Authors: Schwartz, Victor ; Appelbaum, Paul S.
Publication Type: Journal Article
Secondary Title: IRB: Ethics & Human Research
Abstract: The authors reflect on the quality of informed consent to research. They note that substantial body of work has demonstrated that many research subjects have significant misunderstandings on the clinical trials. They point out that ...
Year: 2008

Biblio - KBL781 - 2010-09-28 14:26

Part II: HIPAA and Disclosure Risk Issues

Authors: Sieber, Joan E. ; de Wolf, Virginia A. ; Zarate, Alvan O. ; Steel, Philip M.
Publication Type: Journal Article
Secondary Title: IRB: Ethics & Human Research
Abstract: This article discusses how data are prepared for sharing by the Institutional Review Boards (IRBs). This article is the second in a series of three articles whose focus is to assist IRBs in providing guidance to investigators and re...
Year: 2006

Biblio - KBL781 - 2010-09-28 14:17

Part III: Meeting the Challenge When Data Sharing Is Required

Authors: Sieber, Joan E. ; de Wolf, Virginia A. ; Zarate, Alvan O. ; Steel, Philip M.
Publication Type: Journal Article
Secondary Title: IRB: Ethics & Human Research
Abstract: The article describes several approaches that can be used in meeting the challenges posed by the sharing of confidential data. It provides an overview of two basic methods of protecting the confidentiality of data, which include res...
Year: 2006

Biblio - KBL781 - 2010-09-28 14:17

The Quality of Informed Consent in a Clinical Research Study in Thailand

Authors: Chuenyam, Theshinee ; Pace, Christine A. ; Duncombe, Chris ; Phanuphak, Praphan ; Bebchuk, Judith D. ; Emanuel, Ezekiel J. ; Wendler, David ; Tavel, Jorge A. ; Forster, Heidi P. ; McNay, Laura A. ; Grady, Christine
Publication Type: Journal Article
Secondary Title: IRB: Ethics & Human Research
Abstract: Evaluates the quality of informed consent in a clinical research study in Thailand. Parts of the informed consent process; Influence of the consent form to the decision of respondents to join the Evaluation of Subcutaneous Proleukin...
Year: 2005

Biblio - KBL781 - 2010-09-28 14:24

Can Underpowered Clinical Trials Be Justified?

Authors: Rosoff, Philip M.
Publication Type: Journal Article
Secondary Title: IRB: Ethics & Human Research
Abstract: The article discusses several issues related to clinical trials. The goal of human clinical trials is to identify safe and effective therapies. To justify exposing individuals to the risks of new interventions physicians often balan...
Year: 2004

Biblio - KBL781 - 2010-09-28 14:25

Genomic Research Data: Open vs. Restricted Access

Authors: Resnik, David B.
Publication Type: Journal Article
Secondary Title: IRB: Ethics & Human Research
Abstract: The article discusses open access and restricted access approaches concerning genomic research data. Restricted access provides confidentiality for research participants, yet potentially decreases the pace of scientific progress. Op...
Year: 2010

Biblio - KBL781 - 2010-09-28 14:25

How to Make Consent Informed: Possible Lessons from Tibet

Authors: Miller, Suellen ; Le, Phuoc V. ; Craig, Sienna ; Adams, Vincanne ; Tudor, Carrie ; Varner, Michael
Publication Type: Journal Article
Secondary Title: IRB: Ethics & Human Research
Abstract: The article focuses on the study which aims to develop an informed consent process of Tibetan traditional medicine through a randomized placebo-controlled trial in Lhasa, China. The study reveals a process that enables the U.S. and ...
Year: 2007

Biblio - KBL781 - 2010-09-28 14:23

Disclosure of Information to Potential Subjects on Research Recruitment Web Sites

Authors: Klitzman, Robert ; Albala, Ilene ; Siragusa, Joseph ; Patel, Jignasha ; Appelbaum, Paul S.
Publication Type: Journal Article
Secondary Title: IRB: Ethics & Human Research
Abstract: The article presents the studies that investigated how individuals are recruited through the Internet for research studies and what type of information clinical trial Web sites provide to prospective participants in the U.S. The fin...
Year: 2008

Biblio - KBL781 - 2010-09-28 14:21

Clinical Research in Low-Literacy Populations: Using Teach-Back to Assess Comprehension of Informed Consent and Privacy Information

Authors: Kripalani, Sunil ; Bengtzen, Rachel ; Henderson, Laura E. ; Jacobson, Terry A.
Publication Type: Journal Article
Secondary Title: IRB: Ethics & Human Research
Abstract: The article examines the role of patients' age, cognition, educational attainment and literacy level on their comprehension of informed consent and privacy information as required under the Privacy Rule of the Health Insurance Porta...
Year: 2008

Biblio - KBL781 - 2010-09-28 14:21

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