Table · dataset · 2017
The social and ethical implications of genetic screening - part 1 : spinal muscular atrophy screening survey
Listed in figshare
This data file contains the responses of 337 participants who completed the SMA Screening Survey (UK).
Description
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).<br><br>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.
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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.
Links
Where it is published
- DOI doi.org/10.82444/warw.33803197.v1 ↗
DOI / persistent id · from figshare com
Catalogue records · 1
- OAI-PMH record api.figshare.com/v2/oai?verb=GetRecord&metadataPrefix=oai_dc&identifier=oai%3Af… ↗
metadata API · from figshare com
Topics
- From keywords
- Astronomy & Astrophysics · Chemistry · Computer Science & AI · Earth & Environmental Science · Economics & Finance · Engineering · Humanities · Life Sciences · Medicine & Health · Ocean & Atmospheric Science · Social Science
- Inferred from text
- Demography 68%
Provenance · 1 source records, 17 field assertions
| Source | Key | Last seen | Raw |
|---|---|---|---|
| figshare | oai:figshare.com:article/33803197 | 9 d ago | JSON v1 |
| Field | Assertion | Extractor | Evidence |
|---|---|---|---|
| access_level | source · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].anzsrc:group:4403 | enrichment · figshare com | taxonomy-embedding@1.0.0 | title+keywords+description (68%) |
| concepts[field].local:field:astronomy | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:chemistry | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:computer-science-ai | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:earth-environmental | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:economics-finance | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:engineering | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:humanities | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:life-sciences | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:medicine-health | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:ocean-atmospheric | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:social-science | mapping · figshare com | connector:figshare_com@1.0.0 | |
| description | source · figshare com | connector:figshare_com@1.0.0 | /metadata/dc/description |
| license | source · figshare com | connector:figshare_com@1.0.0 | /metadata/dc/rights |
| publication_date | source · figshare com | connector:figshare_com@1.0.0 | |
| title | source · figshare com | connector:figshare_com@1.0.0 | /metadata/dc/title |