SwePub - sökning: L773:1754 9981

Numrering	Referens	Omslagsbild	Hitta
1.	Hultman, Christina M, et al. (författare) Ethical Issues in Cancer Register Follow-Up of Hormone Treatment in Adolescence 2009 Ingår i: Public Health Ethics. - : Oxford University Press (OUP). - 1754-9973 .- 1754-9981. ; 2:1, s. 30-36 Tidskriftsartikel (refereegranskat)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 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.

Hultman, Christina M, et al. (författare)
Ethical Issues in Cancer Register Follow-Up of Hormone Treatment in Adolescence
2009
Ingår i: Public Health Ethics. - : Oxford University Press (OUP). - 1754-9973 .- 1754-9981. ; 2:1, s. 30-36
Tidskriftsartikel (refereegranskat)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 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.

Träfflista för sökning "L773:1754 9981 ;pers:(Hansson Mats G.)"

Avgränsa träffmängd