Opinions and experiences of recontacting patients: a survey of Australasian genetic health professionals.

Vora, BB; Mountain, H; Nichols, C; Schofield, L

Opinions and experiences of recontacting patients: a survey of Australasian genetic health professionals.

Vora, BB Mountain, H

Nichols, C Schofield, L

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Publisher:: Springer
Publication Type:: Journal Article
Citation:: Journal of Community Genetics, 2022, 13, (2), pp. 193-199
Issue Date:: 2022-04

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Field	Value	Language
dc.contributor.author	Vora, BB
dc.contributor.author	Mountain, H https://orcid.org/0000-0003-2295-0210
dc.contributor.author	Nichols, C
dc.contributor.author	Schofield, L
dc.date.accessioned	2022-11-22T00:36:59Z
dc.date.available	2021-12-03
dc.date.available	2022-11-22T00:36:59Z
dc.date.issued	2022-04
dc.identifier.citation	Journal of Community Genetics, 2022, 13, (2), pp. 193-199
dc.identifier.issn	1868-310X
dc.identifier.issn	1868-6001
dc.identifier.uri	http://hdl.handle.net/10453/163634
dc.description.abstract	The issue of recontacting past genetics patients is increasingly relevant, particularly with the introduction of next-generation sequencing. Improved testing can provide additional information on the pathogenicity and prevalence of genetic variants, often leading to a need to recontact patients. Some international genetics societies have position statements and recommendations to guide genetic health professionals (GHPs) navigating the legal, ethical and practical issues of recontacting. In the absence of a standardised Australasian protocol, we explored the experiences and opinions of Australasian GHPs regarding patient follow-up and recontacting practices. Forty-five respondents completed an online survey. Most respondents indicated that recontacting occurred on an ad hoc basis, but most genetic services relied on patients (or family) initiating recontact. Implementation of a routine recontacting system was widely dismissed by 73% of respondents, citing lack of resources, limited information on legal responsibility and setting unrealistic expectations as common barriers. If recontact was contemplated, e-communication was an acceptable first step. This study identified the need for integrated familial cancer registries to assist under-resourced genetic services to maintain up-to-date patient records. Developing a standard recontacting protocol with flexibility to account for patient individuality and circumstances might enable provision of equitable service within Australasia.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	Springer
dc.relation.ispartof	Journal of Community Genetics
dc.relation.isbasedon	10.1007/s12687-021-00570-z
dc.rights	info:eu-repo/semantics/closedAccess
dc.subject	0604 Genetics
dc.title	Opinions and experiences of recontacting patients: a survey of Australasian genetic health professionals.
dc.type	Journal Article
utslib.citation.volume	13
utslib.location.activity	Germany
utslib.for	0604 Genetics
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/Graduate School of Health
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/Graduate School of Health/GSH.Genetic Counselling
utslib.copyright.status	closed_access	*
pubs.consider-herdc	false
dc.date.updated	2022-11-22T00:36:58Z
pubs.issue	2
pubs.publication-status	Published
pubs.volume	13
utslib.citation.issue	2

Abstract:

The issue of recontacting past genetics patients is increasingly relevant, particularly with the introduction of next-generation sequencing. Improved testing can provide additional information on the pathogenicity and prevalence of genetic variants, often leading to a need to recontact patients. Some international genetics societies have position statements and recommendations to guide genetic health professionals (GHPs) navigating the legal, ethical and practical issues of recontacting. In the absence of a standardised Australasian protocol, we explored the experiences and opinions of Australasian GHPs regarding patient follow-up and recontacting practices. Forty-five respondents completed an online survey. Most respondents indicated that recontacting occurred on an ad hoc basis, but most genetic services relied on patients (or family) initiating recontact. Implementation of a routine recontacting system was widely dismissed by 73% of respondents, citing lack of resources, limited information on legal responsibility and setting unrealistic expectations as common barriers. If recontact was contemplated, e-communication was an acceptable first step. This study identified the need for integrated familial cancer registries to assist under-resourced genetic services to maintain up-to-date patient records. Developing a standard recontacting protocol with flexibility to account for patient individuality and circumstances might enable provision of equitable service within Australasia.

Please use this identifier to cite or link to this item:

http://hdl.handle.net/10453/163634