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Expanding the notion of ‘benefit’ : comparing public, parent, and professional attitudes towards whole genome sequencing in newborns
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Clark, Corinna C. A. and Boardman, Felicity K. (2022) Expanding the notion of ‘benefit’ : comparing public, parent, and professional attitudes towards whole genome sequencing in newborns. New Genetics and Society, 41 (2). pp. 96-115. doi:10.1080/14636778.2022.2091533 ISSN 1463-6778.
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Official URL: http://dx.doi.org/10.1080/14636778.2022.2091533
Abstract
Whole genome sequencing (WGS) is being considered as a tool to deliver newborn screening (NBS) internationally. Its use would dramatically increase the number of genetic variants identified, presenting a host of ethical, social, and practical considerations. A scoping review was conducted to examine the acceptability of WGS-NBS among parents, the public, and health professionals. Parent/public groups were enthusiastic about WGS-NBS, holding panoramic views of current/future benefits, incorporating family and wider society. While actionable early-onset findings were prioritised, non-actionable and uncertain results were still viewed as empowering. Conversely, professionals preferred selective results disclosure, prioritised by clinical need. They emphasised the need for meaningful consent and protection of the child’s autonomy. All groups outlined the importance of properly considered implementation (e.g. resources, governance) to minimise harms and prevent a reduction in NBS participation. As genomic medicine integrates into healthcare, divergent conceptualisations of ‘harms’ and ‘benefits’ across social groups must be considered.
| Item Type: | Journal Article | ||||||
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| Subjects: | Q Science > QH Natural history R Medicine > RA Public aspects of medicine R Medicine > RB Pathology R Medicine > RJ Pediatrics R Medicine > RJ Pediatrics > RJ101 Child Health. Child health services |
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| Divisions: | Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School |
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| Library of Congress Subject Headings (LCSH): | Human gene mapping, Genetic screening, Newborn infants -- Diseases -- Diagnosis, Medical screening | ||||||
| Journal or Publication Title: | New Genetics and Society | ||||||
| Publisher: | Routledge Journals, Taylor & Francis Ltd. | ||||||
| ISSN: | 1463-6778 | ||||||
| Official Date: | 26 June 2022 | ||||||
| Dates: |
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| Volume: | 41 | ||||||
| Number: | 2 | ||||||
| Page Range: | pp. 96-115 | ||||||
| DOI: | 10.1080/14636778.2022.2091533 | ||||||
| Status: | Peer Reviewed | ||||||
| Publication Status: | Published | ||||||
| Access rights to Published version: | Open Access (Creative Commons) | ||||||
| Date of first compliant deposit: | 20 June 2022 | ||||||
| Date of first compliant Open Access: | 22 June 2022 | ||||||
| Related URLs: |
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