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EthicsCaseStudyForm edit

Title A Breach of Confidentiality
Long Title A Breach of Confidentiality
Contributor/Contact John Banja, PhD (jbanja@emory.edu)
Contributor Details John Banja, PhD
Director, Section on Ethics in Research
Atlanta Clinical and Translational Science Institute
Emory University
Atlanta, GA 30322
CTSA Emory
Case Study Provided The research I was doing involved working with tissue samples from a large number of patient-donors that were collected over the course of 20 years. IRB approval for acquiring specimens and protocols were obtained according to institutional and federal government guidelines and the study proceeded without incident. Indeed, the lab published several important papers in the field and, of course, maintained the privacy and confidentiality of all donors.
But one day when I was well into my work, I was nonchalantly informed by one of the principal investigators in the lab of the identity of one of the donors of our specimens. The donor was a highly visible, nationally known celebrity.
I never found out how this investigator came to know this tissue donor's identity. To my knowledge, the only information that the laboratory staff had was their donor's age, sex, and race. In fact, none of the laboratory's documentation described any donor in any specific terms. Nevertheless, and as result of this revelation, I was faced with the problem of deciding whether or not to continue to conduct research using cells derived from this individual. This was especially problematic for me because this donor's cells had been very useful to me, yielding promising and exciting data up to that point.
Ultimately, I decided that it would be inappropriate for me to continue conducting experiments using cultures from cells derived from this person. But I wonder if I was being "too ethical." Was I?
Data Acquisition, Management, Sharing and Ownership Topics
Ethical values behind the scientific standards for data acquisition_management_sharing and ownership,
Data privacy
Mentor and Trainee Responsibilities Topics
Definitions and expectations of the mentor and trainee relationship,
Scientific responsibilities of the mentor,
Responsibilities of trainees within the mentor–trainee relationship,
Addressing challenges and problems in the mentor–trainee relationship
Publication Practices and Responsible Authorship Topics No publication practices and responsible authorship topics
Peer Review Topics No peer review topics
Collaborative Science Topics No collaborative science topics
Research Misconduct Topics
Responding to observed misconduct
Conflicts of Interest, Law and Policy Topics No conflicts of interest_law_and policy topics
Human Subjects Human subjects research

URL http://www.actsi.org/areas/erks/ethics/index.html
RCR Keyword Lab Partners, Mentoring, Post-doc
Other RCR Keywords Age; Bias; Confidentiality; Donors; Human Tissue; Principal Investigator; Privacy; Race; Sex; Tissue Samples
Type of Case

Source for Topic Areas Du Bois, J., & Dueker, J. (2009). Teaching and Assessing the Responsible Conduct of Research: A Delphi Consensus Panel Report. Journal of Research Administration, 40(1), 49-70.


Topic revision: r2 - 28 Oct 2011 - 11:02:17 - MaryBanach
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