Cargando…
Disclosure to genetic relatives without consent – Australian genetic professionals’ awareness of the health privacy law
BACKGROUND: When a genetic mutation is identified in a family member (proband), internationally, it is usually the proband’s or another responsible family member’s role to disclose the information to at-risk relatives. However, both active and passive non-disclosure in families occurs: choosing not...
Autores principales: | , , , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2020
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7001268/ https://www.ncbi.nlm.nih.gov/pubmed/32019532 http://dx.doi.org/10.1186/s12910-020-0451-1 |
_version_ | 1783494206208081920 |
---|---|
author | Meggiolaro, Natalia Barlow-Stewart, Kristine Dunlop, Kate Newson, Ainsley J. Fleming, Jane |
author_facet | Meggiolaro, Natalia Barlow-Stewart, Kristine Dunlop, Kate Newson, Ainsley J. Fleming, Jane |
author_sort | Meggiolaro, Natalia |
collection | PubMed |
description | BACKGROUND: When a genetic mutation is identified in a family member (proband), internationally, it is usually the proband’s or another responsible family member’s role to disclose the information to at-risk relatives. However, both active and passive non-disclosure in families occurs: choosing not to communicate the information or failing to communicate the information despite intention to do so, respectively. The ethical obligations to prevent harm to at-risk relatives and promote the duty of care by genetic health professionals (GHPs) is in conflict with Privacy laws and professional regulations that prohibits disclosure of information to a third party without the consent of the proband (duty of confidentiality). In New South Wales (NSW), Australia, amendments to Privacy legislation permits such disclosure to living genetic relatives with the process defined under guidelines although there is no legal duty to warn. This study assessed NSW GHP’s awareness and experience of the legislation and guidelines. METHODS: An online survey collected demographics; theoretical knowledge; clinical scenarios to assess application knowledge; attitudes; confidence; experience with active non-disclosure. A link to correct answers was provided after completion. Knowledge scores above the median for non-parametric data or above the mean for parametric data were classified as ‘good’ or ‘poor’. Chi square tests assessed associations between confidence and knowledge scores. RESULTS: While many of the 37 participants reported reading the guidelines, there was limited awareness of their scope and clinical application; that there is no legal duty to warn; and that the threat does not need to be imminent to warrant disclosure. No association between confidence and ‘good’ theoretical or applied clinical knowledge was identified. Uncertainty of their professional responsibility was identified and in the several case examples of active non-disclosure that were reported this uncertainty reflected the need for further understanding of the guidelines in regard to the processes required before disclosure was initiated. CONCLUSIONS: There is a need for further education and training about the guidelines associated with the legislation that would be relevant to support disclosure. The findings may inform future strategies to support introduction of policy changes in other jurisdictions where similar regulatory regimes are introduced. |
format | Online Article Text |
id | pubmed-7001268 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-70012682020-02-10 Disclosure to genetic relatives without consent – Australian genetic professionals’ awareness of the health privacy law Meggiolaro, Natalia Barlow-Stewart, Kristine Dunlop, Kate Newson, Ainsley J. Fleming, Jane BMC Med Ethics Research Article BACKGROUND: When a genetic mutation is identified in a family member (proband), internationally, it is usually the proband’s or another responsible family member’s role to disclose the information to at-risk relatives. However, both active and passive non-disclosure in families occurs: choosing not to communicate the information or failing to communicate the information despite intention to do so, respectively. The ethical obligations to prevent harm to at-risk relatives and promote the duty of care by genetic health professionals (GHPs) is in conflict with Privacy laws and professional regulations that prohibits disclosure of information to a third party without the consent of the proband (duty of confidentiality). In New South Wales (NSW), Australia, amendments to Privacy legislation permits such disclosure to living genetic relatives with the process defined under guidelines although there is no legal duty to warn. This study assessed NSW GHP’s awareness and experience of the legislation and guidelines. METHODS: An online survey collected demographics; theoretical knowledge; clinical scenarios to assess application knowledge; attitudes; confidence; experience with active non-disclosure. A link to correct answers was provided after completion. Knowledge scores above the median for non-parametric data or above the mean for parametric data were classified as ‘good’ or ‘poor’. Chi square tests assessed associations between confidence and knowledge scores. RESULTS: While many of the 37 participants reported reading the guidelines, there was limited awareness of their scope and clinical application; that there is no legal duty to warn; and that the threat does not need to be imminent to warrant disclosure. No association between confidence and ‘good’ theoretical or applied clinical knowledge was identified. Uncertainty of their professional responsibility was identified and in the several case examples of active non-disclosure that were reported this uncertainty reflected the need for further understanding of the guidelines in regard to the processes required before disclosure was initiated. CONCLUSIONS: There is a need for further education and training about the guidelines associated with the legislation that would be relevant to support disclosure. The findings may inform future strategies to support introduction of policy changes in other jurisdictions where similar regulatory regimes are introduced. BioMed Central 2020-02-04 /pmc/articles/PMC7001268/ /pubmed/32019532 http://dx.doi.org/10.1186/s12910-020-0451-1 Text en © The Author(s). 2020 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. |
spellingShingle | Research Article Meggiolaro, Natalia Barlow-Stewart, Kristine Dunlop, Kate Newson, Ainsley J. Fleming, Jane Disclosure to genetic relatives without consent – Australian genetic professionals’ awareness of the health privacy law |
title | Disclosure to genetic relatives without consent – Australian genetic professionals’ awareness of the health privacy law |
title_full | Disclosure to genetic relatives without consent – Australian genetic professionals’ awareness of the health privacy law |
title_fullStr | Disclosure to genetic relatives without consent – Australian genetic professionals’ awareness of the health privacy law |
title_full_unstemmed | Disclosure to genetic relatives without consent – Australian genetic professionals’ awareness of the health privacy law |
title_short | Disclosure to genetic relatives without consent – Australian genetic professionals’ awareness of the health privacy law |
title_sort | disclosure to genetic relatives without consent – australian genetic professionals’ awareness of the health privacy law |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7001268/ https://www.ncbi.nlm.nih.gov/pubmed/32019532 http://dx.doi.org/10.1186/s12910-020-0451-1 |
work_keys_str_mv | AT meggiolaronatalia disclosuretogeneticrelativeswithoutconsentaustraliangeneticprofessionalsawarenessofthehealthprivacylaw AT barlowstewartkristine disclosuretogeneticrelativeswithoutconsentaustraliangeneticprofessionalsawarenessofthehealthprivacylaw AT dunlopkate disclosuretogeneticrelativeswithoutconsentaustraliangeneticprofessionalsawarenessofthehealthprivacylaw AT newsonainsleyj disclosuretogeneticrelativeswithoutconsentaustraliangeneticprofessionalsawarenessofthehealthprivacylaw AT flemingjane disclosuretogeneticrelativeswithoutconsentaustraliangeneticprofessionalsawarenessofthehealthprivacylaw |