Research recruitment through US central cancer registries: balancing privacy and scientific issues.

Abstract:

:Cancer registries are a valuable resource for recruiting participants for public health-oriented research, although such recruitment raises potentially competing concerns about patient privacy and participant accrual. We surveyed US central cancer registries about their policies for research contact with patients, and results showed substantial variation. The strategy used most frequently (37.5% of those that allowed patient contact), which was among the least restrictive, was for investigators to notify patients' physicians and then contact patients with an opt-out approach. The most restrictive strategy was for registry staff to obtain physician permission and contact patients with an opt-in approach. Population-based studies enhance cancer control efforts, and registry policies can affect researchers' ability to conduct such studies. Further discussion about balanced recruitment approaches that protect patient privacy and encourage beneficial research is needed.

journal_name

Am J Public Health

authors

Beskow LM,Sandler RS,Weinberger M

doi

10.2105/AJPH.2004.061556

subject

Has Abstract

pub_date

2006-11-01 00:00:00

pages

1920-6

issue

11

eissn

0090-0036

issn

1541-0048

pii

AJPH.2004.061556

journal_volume

96

pub_type

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