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JNCI Journal of the National Cancer Institute 2002 94(17):1269-1270; doi:10.1093/jnci/94.17.1269
© 2002 by Oxford University Press
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Journal of the National Cancer Institute, Vol. 94, No. 17, 1269-1270, September 4, 2002
© 2002 Oxford University Press

NEWS

Cancer Registries: Should Informed Consent Be Required?

John Illman

The first 10% of the full text of this article appears below.

The United Kingdom boasts the world’s largest national cancer registry system. Over the last 40 years, it claims to have collected, checked, cross-linked, stored, and analyzed identifiable data on millions of patients without ever once breaching patient confidentiality. But a legal question mark now hangs over the system and, according to one view, it is in breach of data protection law.

The situation has set the stage for a debate among cancer registries, politicians, patient groups, medical ethicists, and the government as to whether registration should be mandatory or based on informed consent. Five working groups are investigating different options.

The U.K. Association of Cancer Registries (UKACR) is campaigning for a statutory system similar to the ones operating . . . [Full Text of this Article]


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