DMCA
PRIVACY AND EQUALITY IN DIAGNOSTIC GENETIC TESTING (2007)
BibTeX
@MISC{Nyrhinen07privacyand,
author = {Tarja Nyrhinen and Marja Hietala and Pauli Puukka and Helena Leino-kilpi and Tarja Nyrhinen and Marja Hietala and Pauli Puukka},
title = {PRIVACY AND EQUALITY IN DIAGNOSTIC GENETIC TESTING},
year = {2007}
}
Share
 |
 |
 |
 |
||
OpenURL
Abstract
Key words: diagnostic genetic testing; equality; ethics; pre- and post-analytic phase; privacy This study aimed to determine the extent to which the principles of privacy and equality were observed during diagnostic genetic testing according to views held by patients or child patients ’ parents (n /106) and by staff (n /162) from three Finnish university hospitals. The data were collected through a structured questionnaire and analysed using the SAS 8.1 statistical software. In general, the two principles were observed relatively satisfactorily in clinical practice. According to patients/parents, equality in the postanalytic phase and, according to staff, privacy in the pre-analytic phase, involved the greatest ethical problems. The two groups differed in their views concerning pre-analytic privacy. Although there were no major problems regarding the two principles, the differences between the testing phases require further clarification. To enhance privacy protection and equality, professionals need to be given more genetics/ethics training, and patients individual counselling by genetics units staff, giving more consideration to patients ’ world-view, the purpose of the test and the test result.
Keyphrases
privacy equality diagnostic genetic testing genetics unit staff diagnostic genetic testing key word post-analytic phase privacy protection postanalytic phase pre-analytic phase genetics ethic training ethical problem pre-analytic privacy structured questionnaire finnish university hospital patient parent patient individual counselling statistical software clinical practice test result major problem child patient parent
