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Caroline Whitbeck Elmer G. Beamer-Hubert H. Schneider Emerita Professor in Ethics Case Western Reserve University Case Western Reserve University More Posts
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Balancing Scientific Usefulness with Privacy
Secondary Title Balancing Scientific Usefulness with Privacy

Added08/17/2006

Author(s) Thomas H. Murray

A scenario about a researcher working with tissue samples trying to balance the need for in-depth demographic information with the individuals right to privacy.

Author(s): Thomas H. Murray, Ph.D.

Research on linked or identifiable samples can reveal information about individuals that they might prefer to be kept confidential. They may fear that their privacy may be threatened, or that they could suffer discrimination at the hands of insurers, employers, and other organizations. Yet, there are many times when scientists would like to have as much information as possible about the tissue samples on which they are working, and so prefer to have linked or identifiable samples rather than unlinked or anonymous ones.

A scientist proposing a new exploratory study of the molecular biology and genetics of multiple sclerosis requests tissue samples with an abundance of accompanying clinical or demographic information. The scientist believes that MS is the product of a complex interaction of genetic, epigenetic and environmental factors, and wants as much information as possible in order to develop hypotheses about combinations of factors that may work together to cause or exacerbate MS.

  • How should we strike the balance between the interests of the sources of tissue in their confidentiality, privacy, and protection against possible discrimination?

 From Discussion Scenarios for Group Mentoring in Responsible Research

 

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Contributor(s) Caroline Whitbeck
Notes Caroline Whitbeck introduced methods and modules for discussing numerous issues in responsible conduct of research at a Sigma Xi Forum in 2000. Partial funding for the development of this material came from an NIH grant. You can find the entire sequence on the OEC at http://www.onlineethics.org/Resources/TeachingTools/Modules/19237.aspx. Some information in these historical modules may be out-of-date; for instance, there may be a new edition of the professional society’s code that is referred to in an item. If you have suggestions for updates, please contact the OEC.
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Rights For more information on permissions to use this material please see: http://onlineethics.org/permissions.aspx
Year 2000
Publisher provided Keywords BIOLOGY GENETICS MEDICINE Privacy
Publisher National Academy of Engineering
Language English
  • Using Case Studies Bibliography

    Added03/26/2010

    This bibliography includes examples of different ways instructors have used case studies to introduce ethical topics to their students and resources for finding cases and incorporating them into the classroom.

    Author(s) Kelly Laas
    Year 2016
  • Added08/23/2006

    In this essay, Dr. Whitbeck outlines an 'agent-centered' approach to learning ethics. The central aim is to prepare students to act wisely and responsibly when faced with moral problems. She provides a number of examples and cases with descriptions of questions and directions for promoting student participation and stimulating thought and discussion.

    Year 1995
Cite this page: "Balancing Scientific Usefulness with Privacy" Online Ethics Center for Engineering 8/17/2006 OEC Accessed: Thursday, December 8, 2016 <www.onlineethics.org/Resources/TeachingTools/Modules/19237/resethpages/balance_privacy.aspx>