Research recruitment through US central cancer registries: balancing privacy and scientific issues.
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.
Beskow
Laura M
LM
Department of Health Policy and Administration, University of North Carolina School of Public Health, Chapel Hill 27599-7411, USA. laura_beskow@unc.edu
Sandler
Robert S
RS
Weinberger
Morris
M
D002568:Certification; D003219:Confidentiality / Q000331:legislation & jurisprudence*; D028744:Ethics Committees, Research; D019538:Health Care Surveys; D020408:Health Insurance Portability and Accountability Act; D006801:Humans; D009369:Neoplasms; D019370:Observation; D016134:Organizational Policy; D010353:Patient Education as Topic; D018579:Patient Selection / Q000941:ethics*; D010819:Physician's Role; D011634:Public Health / Q000941:ethics*; D012109:Research Support as Topic / Q000941:ethics / Q000706:statistics & numerical data; D012111:Residence Characteristics; D018426:SEER Program / Q000941:ethics / Q000331:legislation & jurisprudence / Q000458:organization & administration*; D013219:State Government; D014481:United States