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

Ethical Issues in Cancer Register Follow-Up of Hormone Treatment in Adolescence 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. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Public Health Ethics Oxford University Press

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

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References (19)

Publisher
Oxford University Press
Copyright
The Author 2009. Published by Oxford University Press. Available online at www.phe.oxfordjournals.org
Subject
Original Article
ISSN
1754-9973
eISSN
1754-9981
DOI
10.1093/phe/php003
Publisher site
See Article on Publisher Site

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.

Journal

Public Health Ethics – Oxford University Press

Published: Apr 3, 2009

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