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 shouldone deal with informed consent for such a study?We designed a qualitative study with semi-structured telephoneinterviews. 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 womendid not express worry after reading the study protocol, but did convey considerable frustration that this researchhad not been initiated earlier. Active consent was not seen as crucial. We found strong interest in a high participationrate and a concern over missing data. The selection of information and consent or the decision to goahead 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 safeguardingprivacy in epidemiological linkage studies and in follow-up of medical treatment without losing the scientificvalue by requesting for informed consent.

Ämnesord

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Folkhälsovetenskap, global hälsa, socialmedicin och epidemiologi (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Public Health, Global Health, Social Medicine and Epidemiology (hsv//eng)

Nyckelord

Public health medicine research areas

Folkhälsomedicinska forskningsområden

Publikations- och innehållstyp

ref (ämneskategori)

art (ämneskategori)