Schulte P A, Ringen K, Altekruse E B, Gullen W H, Davidson K, Anderson S S, Patton M G
J Occup Med. 1985 Jan;27(1):19-28.
Surviving members of occupational cohorts studied in retrospective analyses of mortality usually are not notified individually of positive study results. However, concern has arisen that such results may contain risk information pertinent to study subjects. To evaluate the effects and implications of individually notifying survivors of such cohorts, we conducted a pilot notification study. Members of a cohort of 1,385 chemical workers who had handled carcinogenic amines were notified by mail that they were likely to be at increased risk of bladder cancer. Also a bladder cancer screening and follow-up program was established. The study demonstrated that notification is a complex action and that much care needs to be taken when communicating information on risk. Notification requires development of (1) criteria as to what constitutes a notifiable risk and (2) programs to meet the medical and social needs of the various parties involved in notification.
在死亡率回顾性分析中所研究的职业队列的存活成员,通常不会被逐一告知阳性研究结果。然而,人们开始担心这些结果可能包含与研究对象相关的风险信息。为了评估单独通知此类队列幸存者的效果和影响,我们开展了一项通知试点研究。通过邮件通知了1385名接触过致癌胺的化学工人队列的成员,告知他们患膀胱癌的风险可能增加。同时还建立了膀胱癌筛查和随访项目。该研究表明,通知是一项复杂的行动,在传达风险信息时需要格外谨慎。通知需要制定(1)关于何种风险构成应被通知风险的标准,以及(2)满足通知所涉及各方医疗和社会需求的项目。