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What results to disclose, when, and who decides? Healthcare professionals’ views on prenatal chromosomal microarray analysis

What results to disclose, when, and who decides? Healthcare professionals’ views on prenatal chromosomal microarray analysis
What results to disclose, when, and who decides? Healthcare professionals’ views on prenatal chromosomal microarray analysis
Objectives: This study explored the views of healthcare-professionals (HCPs) in the UK about what information should be disclosed; when; and whether women/parents should be given a choice as to what they wish to know.

Methods: Q-methodology was used to assess the views of forty HCPs (genetic healthcare professionals, fetal medicine experts, lab-scientists).

Results: Most participants agreed that variants of unknown clinical significance should not be disclosed. Participants were divided between those who considered variants of uncertain clinical significance helpful for parents and clinicians, and those who considered them harmful. Although recognising the potential disadvantages of disclosing risks for adult-onset conditions, participants thought it would be difficult to withhold such information once identified. Participants largely supported some parental involvement in determining which results should be returned. Most participants believed that information obtained via CMA testing in pregnancy should either be disclosed during pregnancy, or not at all.

Conclusion: HCPs taking part in the study largely believed that variants that will inform the management of the pregnancy, or are relevant to other family members, should be reported. Recent UK guidelines, published after this research was completed, reflect these opinions.
252-259
Shkedi-Rafid, Shiri
0f4001fe-e41a-4b33-9afc-67ef298b7172
Fenwick, Angela
95a1f4fa-7f6f-4c07-a93b-9ea39c231c31
Dheensa, Sandi
d7d7e2bb-8def-4fad-9e1d-33d8141a0c9c
Wellesley, Diana
17cbd6c1-0efb-4df1-ae05-64a44987c9c0
Lucassen, Anneke M.
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Shkedi-Rafid, Shiri
0f4001fe-e41a-4b33-9afc-67ef298b7172
Fenwick, Angela
95a1f4fa-7f6f-4c07-a93b-9ea39c231c31
Dheensa, Sandi
d7d7e2bb-8def-4fad-9e1d-33d8141a0c9c
Wellesley, Diana
17cbd6c1-0efb-4df1-ae05-64a44987c9c0
Lucassen, Anneke M.
2eb85efc-c6e8-4c3f-b963-0290f6c038a5

Shkedi-Rafid, Shiri, Fenwick, Angela, Dheensa, Sandi, Wellesley, Diana and Lucassen, Anneke M. (2016) What results to disclose, when, and who decides? Healthcare professionals’ views on prenatal chromosomal microarray analysis. Prenatal Diagnosis, 36 (3), 252-259. (doi:10.1002/pd.4772). (PMID:26743561)

Record type: Article

Abstract

Objectives: This study explored the views of healthcare-professionals (HCPs) in the UK about what information should be disclosed; when; and whether women/parents should be given a choice as to what they wish to know.

Methods: Q-methodology was used to assess the views of forty HCPs (genetic healthcare professionals, fetal medicine experts, lab-scientists).

Results: Most participants agreed that variants of unknown clinical significance should not be disclosed. Participants were divided between those who considered variants of uncertain clinical significance helpful for parents and clinicians, and those who considered them harmful. Although recognising the potential disadvantages of disclosing risks for adult-onset conditions, participants thought it would be difficult to withhold such information once identified. Participants largely supported some parental involvement in determining which results should be returned. Most participants believed that information obtained via CMA testing in pregnancy should either be disclosed during pregnancy, or not at all.

Conclusion: HCPs taking part in the study largely believed that variants that will inform the management of the pregnancy, or are relevant to other family members, should be reported. Recent UK guidelines, published after this research was completed, reflect these opinions.

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More information

Accepted/In Press date: 3 January 2016
e-pub ahead of print date: 7 January 2016
Published date: March 2016
Organisations: Faculty of Medicine

Identifiers

Local EPrints ID: 385725
URI: http://eprints.soton.ac.uk/id/eprint/385725
PURE UUID: c7e711b0-2577-4877-bdae-26adb0a6edde
ORCID for Anneke M. Lucassen: ORCID iD orcid.org/0000-0003-3324-4338

Catalogue record

Date deposited: 21 Jan 2016 14:13
Last modified: 18 Feb 2021 16:58

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Contributors

Author: Shiri Shkedi-Rafid
Author: Angela Fenwick
Author: Sandi Dheensa
Author: Diana Wellesley

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