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Privacy vs. progress: research exceptionalism is bad medicine.

Suzanne M Rivera

    Health Matrix (Cleveland, Ohio : 1991)
    |August 13, 2014
    PubMed
    Summary

    Public attitudes toward privacy are evolving, yet research regulations still overemphasize informational risks. This "research exceptionalism" hinders scientific progress and health advancements by overly restricting data use.

    Area of Science:

    • Bioethics
    • Medical Informatics
    • Public Health Research

    Background:

    • Public attitudes towards privacy are shifting, with increased online sharing of personal and health information.
    • Current regulations and ethical considerations for research involving personal information (informational risks) have not kept pace with these societal changes.
    • A proposal exists to further restrict the use of existing data, like de-identified electronic medical records, for scientific research.

    Purpose of the Study:

    • To examine the concept of "research exceptionalism" in the context of informational risks.
    • To argue that the disproportionate focus on informational risks in research is hindering scientific progress.
    • To advocate for a re-evaluation of research ethics and regulations regarding the use of personal data.

    Main Methods:

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    • Conceptual analysis of research ethics and privacy regulations.
    • Comparison of risks in research settings versus non-research settings (e.g., online data sharing).
    • Historical review of research abuses and their impact on current ethical standards.

    Main Results:

    • The current regulatory approach exhibits "research exceptionalism," treating research risks more cautiously than everyday risks.
    • This exceptionalism, rooted in historical research abuses, leads to an overemphasis on informational risks.
    • The stringent focus on informational risks in research can impede scientific discovery and advancements in human health and welfare.

    Conclusions:

    • Overly cautious regulation of informational risks in research, a form of "research exceptionalism," is detrimental to scientific progress.
    • Revisiting and modernizing ethical guidelines is necessary to balance privacy concerns with the potential benefits of research.
    • Adapting regulations to reflect current societal norms regarding data sharing can facilitate crucial health research.