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How to Handle Genetic Information: A Comparison of Attitudes among Patients and the General Population

Wolff, K.; Brun, W.; Kvale, G.; Ehrencrona, Hans LU ; Soller, Maria LU and Nordin, K. (2010) In Public Health Genomics 13(7-8). p.396-405
Abstract
Background: So far there are no studies comparing the attitudes of patients with hereditary conditions to the attitudes of the general public on how to handle genetic risk information which mutation carriers refuse to disclose to relevant family members. The purpose of the present study was to investigate whether such patients and members of the general public want to be informed about the existence of hereditary conditions within their family, and under which conditions they want healthcare providers to breach confidentiality. Methods: It was hypothesized that the desire to be informed would be influenced by characteristics of both the disease and the individual. Systematically varying 3 disease characteristics (fatality, penetrance and... (More)
Background: So far there are no studies comparing the attitudes of patients with hereditary conditions to the attitudes of the general public on how to handle genetic risk information which mutation carriers refuse to disclose to relevant family members. The purpose of the present study was to investigate whether such patients and members of the general public want to be informed about the existence of hereditary conditions within their family, and under which conditions they want healthcare providers to breach confidentiality. Methods: It was hypothesized that the desire to be informed would be influenced by characteristics of both the disease and the individual. Systematically varying 3 disease characteristics (fatality, penetrance and treatment availability) yielded 8 versions of a questionnaire, which was administered to general population samples in Norway and Sweden (N = 3,207) and to patient samples in both countries (N = 822). Individual differences in uncertainty avoidance, coping style and consideration for future consequences were also assessed. Results and Conclusion: A majority of both patients and the general public want to be informed about the existence of hereditary conditions within their family. However, patients are more positive towards being informed, both with and without the relative's consent, than the general public. The main predictor of the desire to be informed was uncertainty avoidance in both samples. Copyright (C) 2010 S. Karger AG, Basel (Less)
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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Duty to warn, At-risk relatives, Confidentiality, Genetic information
in
Public Health Genomics
volume
13
issue
7-8
pages
396 - 405
publisher
Karger
external identifiers
  • wos:000285011900002
  • scopus:78650203199
ISSN
1662-8063
DOI
10.1159/000313458
language
English
LU publication?
yes
id
d9a5bcbb-71e2-447b-b967-213527562971 (old id 1773656)
date added to LUP
2011-02-01 15:29:16
date last changed
2018-05-29 11:55:29
@article{d9a5bcbb-71e2-447b-b967-213527562971,
  abstract     = {Background: So far there are no studies comparing the attitudes of patients with hereditary conditions to the attitudes of the general public on how to handle genetic risk information which mutation carriers refuse to disclose to relevant family members. The purpose of the present study was to investigate whether such patients and members of the general public want to be informed about the existence of hereditary conditions within their family, and under which conditions they want healthcare providers to breach confidentiality. Methods: It was hypothesized that the desire to be informed would be influenced by characteristics of both the disease and the individual. Systematically varying 3 disease characteristics (fatality, penetrance and treatment availability) yielded 8 versions of a questionnaire, which was administered to general population samples in Norway and Sweden (N = 3,207) and to patient samples in both countries (N = 822). Individual differences in uncertainty avoidance, coping style and consideration for future consequences were also assessed. Results and Conclusion: A majority of both patients and the general public want to be informed about the existence of hereditary conditions within their family. However, patients are more positive towards being informed, both with and without the relative's consent, than the general public. The main predictor of the desire to be informed was uncertainty avoidance in both samples. Copyright (C) 2010 S. Karger AG, Basel},
  author       = {Wolff, K. and Brun, W. and Kvale, G. and Ehrencrona, Hans and Soller, Maria and Nordin, K.},
  issn         = {1662-8063},
  keyword      = {Duty to warn,At-risk relatives,Confidentiality,Genetic information},
  language     = {eng},
  number       = {7-8},
  pages        = {396--405},
  publisher    = {Karger},
  series       = {Public Health Genomics},
  title        = {How to Handle Genetic Information: A Comparison of Attitudes among Patients and the General Population},
  url          = {http://dx.doi.org/10.1159/000313458},
  volume       = {13},
  year         = {2010},
}