Ethical Issues in Cancer Register Follow-Up of Hormone Treatment in Adolescence
| Autor: | Helle Kieler, Ann-Christin Lindgren, Jan Carlstedt-Duke, Ingemar Persson, Martin Ritzén, Christina M. Hultman, Mats G. Hansson |
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| Rok vydání: | 2009 |
| Předmět: |
Register (sociolinguistics)
medicine.medical_specialty business.industry Health Policy media_common.quotation_subject Wish Alternative medicine Safeguarding humanities Issues ethics and legal aspects Informed consent Reading (process) Family medicine medicine Worry business Social psychology Qualitative research media_common |
| Zdroj: | Public Health Ethics. 2:30-36 |
| ISSN: | 1754-9981 1754-9973 |
| DOI: | 10.1093/phe/php003 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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