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Forbidden knowledge

A case study with commentaries exploring ethical issues and genetic research

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Abstract

This case is part of a series of case studies used as an exercise within a program on research ethics education. The case involves research on genetic birth defects in a culturally distinct, closed religious community in which elders speak for the community. The case raises ethical issues of informed consent in such a setting; of collaboration with the community; of conflicts between the researchers’ responsibilities to the community as a whole and to individual subjects; of the impact of the researcher’s findings on the practices and values of the community and issues regarding how the researchers share findings with subjects and how the findings are stored.

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References

  1. Abeliovich, D., Quint, A., Weinberg, N., Verchezon, G., Lerer, I., Ekstein, J. and Rubinstein, E. (1996) Cystic Fibrosis Heterozygote Screening in the Orthodox Community of Ashkenazi Jews: The Dor Yesharim Approach and Heterozygote Frequency, European Journal of Human Genetics 4: 338–3341.

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  2. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, The Belmont Report, Ethical Principles and Guidelines for the Protection of Human Subjects of Research, 1979, http://ohrp.osophs.dhhs.gov/humansubjects/guidance/belmont.htm.

  3. National Commission, Belmont Report; Code of Federal Regulations, Title 45, Department of Health and Human Services, Part 46, Protection of Human Subjects, revised Nov. 13, 2001 and Dec. 13, 2001, http://ohrp.osophs.dhhs.gov/humansubjects/guidance/45cfr46.htm.

  4. Office for Human Research Protections of the U.S. Department of Health and Human Services, and the URL for the IRB Guidebook is http://ohrp.osophs.dhhs.gov/irb/irb_guidebook.htm

  5. American Anthropological Association, Code of Ethics, 1998, http://www.aaanet.org/committees/ethics/ethcode.htm.

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Authors and Affiliations

  1. Washington University School of Medicine, USA

    Latisha Love-Gregory

  2. Boston College, USA

    Karen M. T. Muskavitch

  3. University of Miami School of Medicine, USA

    Jennifer McCafferty

  4. Association for Practical and Professional Ethics, 618 East Third Street, 47405, Bloomington, IN, USA

    Brian Schrag Ph.D. (Executive Secretary)

Authors
  1. Brian Schrag Ph.D.
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  2. Latisha Love-Gregory
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  3. Karen M. T. Muskavitch
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  4. Jennifer McCafferty
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Correspondence to Brian Schrag Ph.D..

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Schrag, B., Love-Gregory, L., Muskavitch, K.M.T. et al. Forbidden knowledge. SCI ENG ETHICS 9, 409–418 (2003). https://doi.org/10.1007/s11948-003-0037-6

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  • DOI: https://doi.org/10.1007/s11948-003-0037-6

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