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Predictive genetic testing of children for adult-onset conditions: negotiating requests with parents

Predictive genetic testing of children for adult-onset conditions: negotiating requests with parents
Predictive genetic testing of children for adult-onset conditions: negotiating requests with parents
Healthcare professionals (HCPs) regularly face requests from parents for predictive genetic testing of children for adult-onset conditions. Little is known about how HCPs handle these test requests, given that guidelines recommend such testing is deferred to adulthood unless there is medical benefit to testing before that time. Our study explored the process of decision-making between HCPs and parents. Semi-structured interviews were conducted with 34 HCPs in 8 regional genetic services across the UK, and data were thematically analysed. We found that instead of saying ‘yes’ or ‘no’ to such requests, many HCPs framed the consultation as an opportunity to negotiate the optimal time of testing. This, they argued, facilitates parents’ considered decision-making, since parents’ eventual decisions after requesting a test was often to defer testing their child. In cases where parents’ requests remained a sustained wish, most HCPs said they would agree to test, concluding that not testing would not serve the child’s wider best interest. As a strategy for determining the child’s best interest and for facilitating shared decision-making, we recommend that HCPs re-frame requests for testing from parents as a discussion about the optimal time of testing for adult-onset disease
1059-7700
244-250
Fenwick, Angela
95a1f4fa-7f6f-4c07-a93b-9ea39c231c31
Plantinga, Mirjam
80329f67-dce0-4e72-ad91-8aff2212dde6
Dheensa, Sandi
d7d7e2bb-8def-4fad-9e1d-33d8141a0c9c
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Fenwick, Angela
95a1f4fa-7f6f-4c07-a93b-9ea39c231c31
Plantinga, Mirjam
80329f67-dce0-4e72-ad91-8aff2212dde6
Dheensa, Sandi
d7d7e2bb-8def-4fad-9e1d-33d8141a0c9c
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5

Fenwick, Angela, Plantinga, Mirjam, Dheensa, Sandi and Lucassen, Anneke (2017) Predictive genetic testing of children for adult-onset conditions: negotiating requests with parents. Journal of Genetic Counseling, 26 (2), 244-250. (doi:10.1007/s10897-016-0018-y).

Record type: Article

Abstract

Healthcare professionals (HCPs) regularly face requests from parents for predictive genetic testing of children for adult-onset conditions. Little is known about how HCPs handle these test requests, given that guidelines recommend such testing is deferred to adulthood unless there is medical benefit to testing before that time. Our study explored the process of decision-making between HCPs and parents. Semi-structured interviews were conducted with 34 HCPs in 8 regional genetic services across the UK, and data were thematically analysed. We found that instead of saying ‘yes’ or ‘no’ to such requests, many HCPs framed the consultation as an opportunity to negotiate the optimal time of testing. This, they argued, facilitates parents’ considered decision-making, since parents’ eventual decisions after requesting a test was often to defer testing their child. In cases where parents’ requests remained a sustained wish, most HCPs said they would agree to test, concluding that not testing would not serve the child’s wider best interest. As a strategy for determining the child’s best interest and for facilitating shared decision-making, we recommend that HCPs re-frame requests for testing from parents as a discussion about the optimal time of testing for adult-onset disease

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Accepted/In Press date: 5 September 2016
e-pub ahead of print date: 28 September 2016
Published date: April 2017
Organisations: Faculty of Medicine

Identifiers

Local EPrints ID: 401036
URI: http://eprints.soton.ac.uk/id/eprint/401036
ISSN: 1059-7700
PURE UUID: 4623bb60-3ab6-4f0e-b387-daec33b75e01
ORCID for Anneke Lucassen: ORCID iD orcid.org/0000-0003-3324-4338

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Date deposited: 03 Oct 2016 13:12
Last modified: 18 Feb 2021 16:58

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Contributors

Author: Angela Fenwick
Author: Mirjam Plantinga
Author: Sandi Dheensa
Author: Anneke Lucassen ORCID iD

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