Is It Just for a Screening Program to Give People All the Information They Want?

Dive, L; Holmes, I; Newson, AJ

Is It Just for a Screening Program to Give People All the Information They Want?

Dive, L

Holmes, I Newson, AJ

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Publisher:: ROUTLEDGE JOURNALS, TAYLOR & FRANCIS LTD
Publication Type:: Journal Article
Citation:: Am J Bioeth, 2023, 23, (7), pp. 34-42
Issue Date:: 2023-07

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Field	Value	Language
dc.contributor.author	Dive, L https://orcid.org/0000-0001-6655-5138
dc.contributor.author	Holmes, I
dc.contributor.author	Newson, AJ
dc.date.accessioned	2024-01-15T23:36:42Z
dc.date.available	2024-01-15T23:36:42Z
dc.date.issued	2023-07
dc.identifier.citation	Am J Bioeth, 2023, 23, (7), pp. 34-42
dc.identifier.issn	1526-5161
dc.identifier.issn	1536-0075
dc.identifier.uri	http://hdl.handle.net/10453/174506
dc.description.abstract	Genomic screening at population scale generates many ethical considerations. One is the normative role that people's preferences should play in determining access to genomic information in screening contexts, particularly information that falls beyond the scope of screening. We expect both that people will express a preference to receive such results and that there will be interest from the professional community in providing them. In this paper, we consider this issue in relation to the just and equitable design of population screening programs like reproductive genetic carrier screening (RGCS). Drawing on a pluralistic public health ethics perspective, we claim that generating and reporting information about genetic variants beyond the scope of the screening program usually lacks clinical, and perhaps personal, utility. There are both pragmatic and ethical reasons to restrict information provision to that which fits the stated purpose of the program.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	ROUTLEDGE JOURNALS, TAYLOR & FRANCIS LTD
dc.relation.ispartof	Am J Bioeth
dc.relation.isbasedon	10.1080/15265161.2023.2207510
dc.rights	info:eu-repo/semantics/embargoedAccess
dc.rights	This is an Accepted Manuscript of an article published by Taylor & Francis in The American Journal of Bioethics on 12 May 2023, available online: http://www.tandfonline.com/10.1080/15265161.2023.2207510
dc.subject	1117 Public Health and Health Services, 2201 Applied Ethics
dc.subject.classification	Applied Ethics
dc.subject.classification	4206 Public health
dc.subject.classification	5001 Applied ethics
dc.subject.mesh	Humans
dc.subject.mesh	Public Health
dc.subject.mesh	Genetic Testing
dc.subject.mesh	Mass Screening
dc.subject.mesh	Humans
dc.subject.mesh	Mass Screening
dc.subject.mesh	Public Health
dc.subject.mesh	Genetic Testing
dc.subject.mesh	Humans
dc.subject.mesh	Public Health
dc.subject.mesh	Genetic Testing
dc.subject.mesh	Mass Screening
dc.title	Is It Just for a Screening Program to Give People All the Information They Want?
dc.type	Journal Article
utslib.citation.volume	23
utslib.location.activity	United States
utslib.for	1117 Public Health and Health Services
utslib.for	2201 Applied Ethics
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	embargoed	*
utslib.copyright.embargo	2024-07-03T00:00:00+1000Z
dc.date.updated	2024-01-15T23:36:41Z
pubs.issue	7
pubs.publication-status	Published
pubs.volume	23
utslib.citation.issue	7

Abstract:

Genomic screening at population scale generates many ethical considerations. One is the normative role that people's preferences should play in determining access to genomic information in screening contexts, particularly information that falls beyond the scope of screening. We expect both that people will express a preference to receive such results and that there will be interest from the professional community in providing them. In this paper, we consider this issue in relation to the just and equitable design of population screening programs like reproductive genetic carrier screening (RGCS). Drawing on a pluralistic public health ethics perspective, we claim that generating and reporting information about genetic variants beyond the scope of the screening program usually lacks clinical, and perhaps personal, utility. There are both pragmatic and ethical reasons to restrict information provision to that which fits the stated purpose of the program.

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

http://hdl.handle.net/10453/174506