Portal de Periódicos da CAPES

Guidelines for confidentiality and cancer registration

2005; Springer Nature; Volume: 92; Issue: 11 Linguagem: Inglês

10.1038/sj.bjc.6602618

1532-1827

Hans H. Storm, David Brewster, Michel P. Coleman, Dennis Deapen, A Oshima, Timothy Threlfall, E Démaret,

Ethics and Legal Issues in Pediatric Healthcare

British Journal of Cancer (2005) 92, 2095–2096. doi:10.1038/sj.bjc.6602618 www.bjcancer.comPublished online 10 May 2005& 2005 Cancer Research UKSir,Legislation and professional guidance on confidentiality inmedical research has increased significantly in the past 10 years(Stiller, 1993; Working Group to the Royal College of PhysiciansCommittee on Ethical Issues in Medicine, 1994; EuropeanParliament, 1995; The Caldicott Committee, 1997; Department ofHealth, 1999; General Medical Council, 2000; Medical ResearchCouncil, 2000; Coker and McKee, 2001; Confidentiality andSecurity Advisory Group for Scotland, 2002; Council for Inter-national Organizations of Medical Sciences, 2002; InformationCommissioner, 2002).Numerous reports have been issued by national and inter-national bodies (Lowrance, 1997; National Health and MedicalResearch Council, 1999; Canadian Institutes of Health Research,2001; Organisation for Economic Co-operation and Development,2001; Council for International Organizations of Medical Sciences,2002; Lowrance, 2002; Nuffield Council on Bioethics, 2002; WorldMedical Association, 2002a,b; Medical Research Council, 2003;National Institutes of Health, 2004).There is very wide debate over the appropriate balance to bestruck between increasing demands for personal autonomy, on theone hand, and, on the other, the need for society to learn from theexperience of individual patients, in order to understand how bestto control disease – this is also in the interests of individuals. Thedebate has often focused on the confidentiality of individual healthdata and the need for informed consent before such data can beused in research (Vandenbroucke, 1992; Vanchieri, 1993; Stroblet al, 2000; Anderson, 2001; Bastian, 2001; Doll, 2001; Doll andPeto, 2001; Cassell and Young, 2002; Greenberg, 2002; Kulynychand Korn, 2002a,b; Verity and Nicoll, 2002; Coleman et al, 2003;De Vet et al, 2003; Ingelfinger and Drazen, 2004; Peto et al, 2004;Tu et al, 2004; Robling et al, 2005).The International Association of Cancer Registries (IACR)published guidance on confidentiality for cancer registries in theBritish Journal of Cancer in 1992 (Coleman et al, 1992). Somenational and regional cancer registry associations incorporatedthe IACR guidance in their own guidelines. At the IACR scientificmeeting in Tampere, Finland, in 2002, it was decided to update theguidance. A review seemed appropriate after 10 years. EuropeanUnion (EU) legislation on the protection of personal data hadcome into force in all member states during this period, andthe EU Directive (European Parliament, 1995) has served as amodel for national legislation in many countries outside Europe.Rapid developments in web-based communication also motivatedrevision of the guidance, with a view to appropriate use ofthis technology, with the attendant risks of breach of confiden-tiality. The guidance was revised by a small group, endorsed bythe IACR Board in 2004, and made available at www.iacr.com.fr/confidentiality2004.pdf.The main changes from the previous version are: a clear description of the principles of confidentiality, as theyrelate to identifiable data and the registration of cancer; an update of measures to protect data confidentiality; guidance on security for both traditional paper-based systemsand modern electronically based data systems; and expanded recommendations designed to ensure confidentialityin data releases for research, including cross-border transfers.The updated IACR guidance on confidentiality in the cancerregistry should help the cancer research community continue toprovide useful information on the causes, treatment and outcomeof cancer in the entire population, while maintaining the highestethical standards in confidential data collection and research.