Boardman, Felicity K. (2017) The social and ethical implications of genetic screening - part 1 : spinal muscular atrophy screening survey. [Dataset]

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Abstract

This data file contains the responses of 337 participants who completed the SMA Screening Survey (UK). All participants live with Spinal Muscular Atrophy in some capacity (either having it themselves or having it in their family). Participants were asked about their views towards population genetic screening: pre-conception genetic screening, prenatal genetic screening and newborn genetic screening. They were also asked about their previous use of reproductive genetic technologies and their views on the wider issue of pregnancy termination. Data collection occurred between September 2014 and June 2015. A related data collection consisting of interview transcripts is also made available (see Related Resources).

Item Type:	Dataset
Subjects:	R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine
Divisions:	Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School
Type of Data:	Quantitative survey data
Library of Congress Subject Headings (LCSH):	Spinal muscular atrophy -- Testing -- Public opinion -- Great Britain, Genetic screening
Publisher:	University of Warwick, Warwick Medical School
Official Date:	15 March 2017
Dates:	Date Event 5 January 2018 Updated 15 March 2017 Published
Collection date:	Date from Date to 1 September 2014 30 June 2015
Status:	Not Peer Reviewed
Publication Status:	Published
Media of Output (format):	.xls .xlsx .pdf
Access rights to Published version:	Open Access (Creative Commons)
Copyright Holders:	University of Warwick
Description:	Data record consists of two data files in .xls and .xlsx format and a PDF documentation file which contains a copy of the survey questions asked. This is survey data (a scanned copy of the survey in the can be found under 'Documentation'). The survey was developed out of qualitative data (36 in-depth interviews). It was distributed to people living with Spinal Muscular Atrophy. Inclusion criteria: living in UK, over 18, diagnosed with SMA/someone in family diagnosed with SMA, English-speaking. The survey was mailed out to 1,000 households affected by SMA (through SMA Support UK), and distributed via email through the SMA patient registry and SMA family networks on social media (facebook, twitter). Data is anonymised. Access to data is safeguarded according to the UK Data Service definition and requires a free UK Data Service registration to access.
RIOXX Funder/Project Grant:	Project/Grant ID RIOXX Funder Name Funder ID ES/K002090/1 [ESRC] Economic and Social Research Council http://dx.doi.org/10.13039/501100000269
Related URLs:	Related item in WRAP Other
Contributors:	Contribution Name Contributor ID Contact Person Boardman, Felicity K. 32153

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