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Privacy and the Human Genome Project.

David L Wiesenthal, Neil I Wiener

    Ethics & Behavior
    |January 1, 1996
    PubMed
    Summary
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    Genetic testing, spurred by the Human Genome Project, raises significant privacy concerns. Individuals may lose privacy rights, necessitating societal consideration of genetic data ownership, confidentiality, and legislative controls.

    Area of Science:

    • Genetics and Bioethics
    • Public Health Policy

    Background:

    • The Human Genome Project has illuminated the genetic basis of diseases and societal conditions.
    • Decreased costs and accessibility of genetic testing extend its use into non-medical areas.
    • This proliferation necessitates a re-evaluation of privacy in the context of genetic information.

    Purpose of the Study:

    • To examine the privacy implications of widespread genetic testing.
    • To identify key ethical and legal issues arising from genetic data acquisition.
    • To explore the balance between individual privacy and societal interests.

    Main Methods:

    • Literature review of ethical, legal, and social implications (ELSI) of genetic testing.
    • Analysis of existing and proposed legislation concerning genetic information.
    Keywords:
    Genetics and ReproductionHuman Genome ProjectProfessional Patient Relationship

    Related Experiment Videos

  • Case study examination of privacy breaches and their consequences.

    • Main Results:

    • Genetic testing significantly impacts individual privacy rights.
    • Key issues include ownership of genetic data, confidentiality, and limitations on screening.
    • A conflict exists between individual privacy rights and societal protection needs.

    Conclusions:

    • Societal frameworks are needed to address genetic data ownership and confidentiality.
    • Legislation is crucial to govern genetic testing and its applications.
    • Balancing individual privacy with public health imperatives requires careful consideration.