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Medical privacy and research.

¹Harris Graduate School of Public Policy Studies, University of Chicago, USA.

The Journal of Legal Studies

|March 27, 2003

Summary

Electronic medical records raise privacy concerns, but this is more about social norms governing doctor-patient relationships than privacy itself. Anonymized data from medical records can be used for research without additional consent.

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Area of Science:

Medical Informatics
Bioethics
Health Law

Background:

Electronic medical records (EMRs) are prevalent, leading to large, shareable medical databases.
The ease of sharing EMRs raises public concerns about privacy and data control.
Existing social norms around the doctor-patient relationship are challenged by EMRs.

Purpose of the Study:

To reframe privacy concerns related to EMRs.
To examine the role of social norms in the use of medical information.
To clarify consent requirements for using de-identified medical data in research.

Main Methods:

Conceptual analysis of privacy issues versus social norm violations.
Examination of existing ethical guidelines and legal frameworks for medical data.
Review of informed consent principles in research.

Main Results:

Concerns over EMRs are primarily related to the erosion of established social norms, not inherent privacy breaches.
Anonymized data elements derived from medical records are no longer individually identifiable.
Information gathered through standard care or consented research does not require new consent for de-identified research use.

Conclusions:

The perceived threat to privacy from EMRs is better understood as a challenge to social norms governing medical information.
De-identification transforms personal medical information into research data, mitigating privacy risks.
Existing consent for care or research is sufficient for using de-identified data, preserving the integrity of the doctor-patient relationship.

Keywords:

Analytical Approach Biomedical and Behavioral Research Legal Approach Professional Patient Relationship

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