Boardman, Felicity Kate
(2018).
The social and ethical implications of genetic screening - Part 1: Spinal muscular atrophy screening survey.
[Data Collection]. Colchester, Essex:
UK Data Archive.
10.5255/UKDA-SN-852600
This study explores the social and ethical implications of the potential introduction of genetic screening for conditions with variable presentations and focusing on the condition Spinal Muscular Atrophy (SMA). The study aims to explore what families living with SMA think about genetic screening and testing in order to understand the role and value of direct ‘experiential knowledge’ in reproductive decision-making. The study also aims to explore whether families living with genetic disease approach screening decisions in a different way to pregnant women from the general population without such ‘experiential knowledge’ of the condition being screened for.
Data description (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).
| Data creators: |
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| Sponsors: |
Economic and Social Research Council
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| Grant reference: |
ES/K002090/1
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| Topic classification: |
Science and technology
Health
Society and culture
|
| Keywords: |
Spinal Muscular Atrophy, Genetic Screening, disability, reprogenetics, ethics, attitudes
|
| Project title: |
Imagining Futures: The Social and Ethical Implications of Genetic Screening
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| Grant holders: |
Felicity Boardman
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| Project dates: |
| From | To |
|---|
| 1 February 2013 | 31 January 2017 |
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| Date published: |
15 Mar 2017 14:09
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| Last modified: |
05 Jan 2018 14:53
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| Collection period: |
| Date from: | Date to: |
|---|
| 1 September 2014 | 30 June 2015 |
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| Country: |
United Kingdom |
| Spatial unit: |
No Spatial Unit |
| Data collection method: |
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). |
| Observation unit: |
Household, Individual |
| Kind of data: |
Numeric, Text |
| Type of data: |
Cross-national survey data, Other surveys |
| Resource language: |
English |
|
| Data sourcing, processing and preparation: |
Data is annonymised.
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| Rights owners: |
|
| Contact: |
| Name | Email | Affiliation | ORCID (as URL) |
|---|
| Boardman, Felicity Kate | felicity.boardman@warwick.ac.uk | University of Warwick | https://orcid.org/my-orcid |
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| Notes on access: |
The Data Collection is available for download to users registered with the UK Data Service.
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| Publisher: |
UK Data Archive
|
| Last modified: |
05 Jan 2018 14:53
|
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