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Public Health Ethics Advance Access originally published online on March 3, 2009
Public Health Ethics 2009 2(1):30-36; doi:10.1093/phe/php003
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© The Author 2009. Published by Oxford University Press. Available online at www.phe.oxfordjournals.org

Ethical Issues in Cancer Register Follow-Up of Hormone Treatment in Adolescence

Christina M. Hultman*

Karolinska Institutet, Stockholm and Ulleråker, Uppsala, Sweden

Ann-Christin Lindgren

Karolinska Institutet, Stockholm, Sweden

Mats G. Hansson

Uppsala University, Sweden

Jan Carlstedt-Duke

Karolinska Institutet, Stockholm, Sweden

Martin Ritzen

Karolinska Institutet, Stockholm, Sweden

Ingemar Persson

Karolinska Institutet, Stockholm, Sweden

Helle Kieler

Karolinska Institutet, Stockholm, Sweden

* Corresponding author: Christina M. Hultman, Department of Medical Epidemiology and Biostatistics, Box 281, SE-171 77 Stockholm, Sweden. Tel.: +46 8 52483893; +46 70 3621031; Fax: +46 8 314975; Email: Christina.Hultman{at}ki.se


  Abstract

Since the 1970s, estrogen have sometimes been used in adolescent girls to reduce very tall adult expected height. Worries about long-term effects have led to a proposal to link treatment data with cancer registers. How should one deal with informed consent for such a study? We designed a qualitative study with semi-structured telephone interviews. From 1200 women who were to be followed-up in cancer registers, we randomly selected 22 women. Major themes were a wish to be involved and a positive attitude to the proposed register research. The women did not express worry after reading the study protocol, but did convey considerable frustration that this research had not been initiated earlier. Active consent was not seen as crucial. We found strong interest in a high participation rate and a concern over missing data. The selection of information and consent or the decision to go ahead without consent in register follow-up is a delicate balancing act. Study participants wish to be contacted, but acknowledge the primary goal of answering important questions. Our study provides support for safeguarding privacy in epidemiological linkage studies and in follow-up of medical treatment without losing the scientific value by requesting for informed consent.


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