Enrolling Children in Clinical Trials for Genetic Neurodevelopmental Conditions: Ethics, Parental Decisions, and Children's Identities.

Turbitt, E; Newson, AJ; Biesecker, BB; Wilfond, BS

Enrolling Children in Clinical Trials for Genetic Neurodevelopmental Conditions: Ethics, Parental Decisions, and Children's Identities.

Turbitt, E

Newson, AJ Biesecker, BB Wilfond, BS

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Publisher:: Wiley
Publication Type:: Journal Article
Citation:: Ethics & Human Research, 2021, 43, (4), pp. 27-36
Issue Date:: 2021-07

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Field	Value	Language
dc.contributor.author	Turbitt, E https://orcid.org/0000-0002-6650-9702
dc.contributor.author	Newson, AJ
dc.contributor.author	Biesecker, BB
dc.contributor.author	Wilfond, BS
dc.date.accessioned	2021-10-07T04:39:08Z
dc.date.available	2021-10-07T04:39:08Z
dc.date.issued	2021-07
dc.identifier.citation	Ethics & Human Research, 2021, 43, (4), pp. 27-36
dc.identifier.issn	2578-2355
dc.identifier.issn	2578-2363
dc.identifier.uri	http://hdl.handle.net/10453/150886
dc.description.abstract	Knowledge of genetic mechanisms contributing to neurodevelopmental conditions is advancing. This is informing development of new drugs to treat or ameliorate these conditions, through targeting underlying genetic pathways. Drugs are tested in clinical trials, necessitating parents to engage with decisions about whether to enroll their child. In this article, we consider important ethical issues to anticipate as clinical research opportunities in genetic neurodevelopmental conditions arise. For example, genetic pathways targeted by the drugs may interact with valued character and personality traits. It is essential that recruitment and consent processes are optimized for families who will grapple with whether these novel drug treatments interact with their child's personality and authentic identity. We call for focused social science research and further normative analysis so that parents are better supported to make informed choices. Additionally, clinical research regulators should have a sound understanding of the contextual experiences regarding how this population of parents engages with decisions.
dc.format	Print
dc.language	eng
dc.publisher	Wiley
dc.relation.ispartof	Ethics & Human Research
dc.relation.isbasedon	10.1002/eahr.500097
dc.rights	info:eu-repo/semantics/openAccess
dc.title	Enrolling Children in Clinical Trials for Genetic Neurodevelopmental Conditions: Ethics, Parental Decisions, and Children's Identities.
dc.type	Journal Article
utslib.citation.volume	43
utslib.location.activity	United States
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	open_access	*
pubs.consider-herdc	false
dc.date.updated	2021-10-07T04:39:07Z
pubs.issue	4
pubs.publication-status	Published
pubs.volume	43
utslib.citation.issue	4

Abstract:

Knowledge of genetic mechanisms contributing to neurodevelopmental conditions is advancing. This is informing development of new drugs to treat or ameliorate these conditions, through targeting underlying genetic pathways. Drugs are tested in clinical trials, necessitating parents to engage with decisions about whether to enroll their child. In this article, we consider important ethical issues to anticipate as clinical research opportunities in genetic neurodevelopmental conditions arise. For example, genetic pathways targeted by the drugs may interact with valued character and personality traits. It is essential that recruitment and consent processes are optimized for families who will grapple with whether these novel drug treatments interact with their child's personality and authentic identity. We call for focused social science research and further normative analysis so that parents are better supported to make informed choices. Additionally, clinical research regulators should have a sound understanding of the contextual experiences regarding how this population of parents engages with decisions.

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http://hdl.handle.net/10453/150886