Cohorts and Privacy

The extent to which major cohort studies now rely on centralized machine-readable files of personal records is taken largely for granted by investigators, but not by the public, privacy advocates, politicians, or the popular press. When widespread linkage into personal histories for statistical stud...

Full description

Saved in:
Bibliographic Details
Published in:Cancer causes & control 1994-05, Vol.5 (3), p.287-291
Main Author: Newcombe, Howard B.
Format: Article
Language:English
Subjects:
Bioethics
Breast cancer
Canada
Cohort Studies
Confidentiality
Databases, Factual
Electronic Data Processing
Epidemiology
Government Regulation
Humans
Lung neoplasms
Medical Record Linkage
Melanoma
Mortality
Neoplasms - epidemiology
Norway
Opinion
Patient confidentiality
Public health
Public Opinion
Records linkage
Registries
United States
Citations: Items that this one cites
Items that cite this one
Online Access:Get full text
Tags: Add Tag
No Tags, Be the first to tag this record!
Description
Summary:The extent to which major cohort studies now rely on centralized machine-readable files of personal records is taken largely for granted by investigators, but not by the public, privacy advocates, politicians, or the popular press. When widespread linkage into personal histories for statistical studies was first envisaged a few decades ago, it was regarded as impractical. But privacy advocates now fear the statistical uses even more than the administrative applications, perhaps because the latter are inevitable to prevent abuses, and often are associated with monetary benefits or personal convenience. Indeed a concept of 'privacy' has arisen that is deemed to be violated even in statistical studies where confidentiality is assured, unless the particular purpose is approved by all individuals. This concept motivates much of the political thinking. What could be lost to preventive medicine and clinical testing by this is illustrated with data from cohort studies reported in this journal (CCC) in 1993.
ISSN:0957-5243
1573-7225
DOI:10.1007/BF01830251