Ethical issues in cancer register follow-up of hormone treatment in adolescence

Public Health Ethics 2 (1):30-36 (2009)
  Copy   BIBTEX


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.



    Upload a copy of this work     Papers currently archived: 91,386

External links

Setup an account with your affiliations in order to access resources via your University's proxy server

Through your library

Similar books and articles

Variations in the management of cancer in the NHS: a legitimate cause for concern?I. H. Kunkler - 1997 - Journal of Evaluation in Clinical Practice 3 (3):173-177.
Justice and Lung Cancer.Aaron Wilson - 2013 - Journal of Medicine and Philosophy 38 (2):219-234.


Added to PP

62 (#255,386)

6 months
15 (#159,128)

Historical graph of downloads
How can I increase my downloads?

Author's Profile

Citations of this work

No citations found.

Add more citations

References found in this work

Scientific research is a moral duty.J. Harris - 2005 - Journal of Medical Ethics 31 (4):242-248.
Building on relationships of trust in biobank research.M. G. Hansson - 2005 - Journal of Medical Ethics 31 (7):415-418.
Do patients have duties?H. M. Evans - 2007 - Journal of Medical Ethics 33 (12):689-694.
Balancing the quality of consent.M. O. Hansson - 1998 - Journal of Medical Ethics 24 (3):182-187.

View all 6 references / Add more references