Abstract
‘Cystic Fibrosis Newborn Screening: You Decide’ is a novel interactive activity developed with healthcare policy makers to facilitate public engagement and understanding of the use of extended genetic testing in newborn screening for cystic fibrosis.
The interactive activity allows the general public to explore and share their views on the question: How should extended genetic testing be used when screening newborn babies for cystic fibrosis? This is a complex question morally, ethically and in terms of the scientific understanding required of inherited conditions, cystic fibrosis and newborn screening processes. This research aimed to help people understand and explore this question and consider the potential impact on families of extended genetic testing.
A series of 4 stakeholder workshops were undertaken to co-design the activity, including the structure, the contextual information it provides in written form, the acted scenes of family experiences, and the questions posed to those engaging in the activity.
The resulting interactivity activity is hosted online as an open access resource. It contains acted and filmed sequences to illustrate family experiences of newborn screening and the potential outcomes, as well as a learning workbook element to explain key concepts and processes. It intends to:
1) explain to the general public how different ways of extended genetic testing for cystic fibrosis in newborn screening could be used in the future
2) enable collection of public and stakeholder views on these two different ways of implementing extended genetic testing in order to inform policy decisions and research.
The resource provides the ‘player’ (e.g. a parent, or member of the general public, a healthcare professional) with an interactive presentation of each of the potential outcomes of genetic testing (when used in different ways), allowing them to visualise the impacts on the families before deciding how they think genetic testing should be used by responding to a series of questions.
The data capture elements, mean that the resource can facilitate access to the considered views of parents and the wider public on genetic testing that are otherwise difficult to obtain but are of importance to healthcare professionals, policy makers and stakeholders. Ongoing work is being undertaken to improve the usability of the site and the readability and accessibility of the content.
The interactive activity allows the general public to explore and share their views on the question: How should extended genetic testing be used when screening newborn babies for cystic fibrosis? This is a complex question morally, ethically and in terms of the scientific understanding required of inherited conditions, cystic fibrosis and newborn screening processes. This research aimed to help people understand and explore this question and consider the potential impact on families of extended genetic testing.
A series of 4 stakeholder workshops were undertaken to co-design the activity, including the structure, the contextual information it provides in written form, the acted scenes of family experiences, and the questions posed to those engaging in the activity.
The resulting interactivity activity is hosted online as an open access resource. It contains acted and filmed sequences to illustrate family experiences of newborn screening and the potential outcomes, as well as a learning workbook element to explain key concepts and processes. It intends to:
1) explain to the general public how different ways of extended genetic testing for cystic fibrosis in newborn screening could be used in the future
2) enable collection of public and stakeholder views on these two different ways of implementing extended genetic testing in order to inform policy decisions and research.
The resource provides the ‘player’ (e.g. a parent, or member of the general public, a healthcare professional) with an interactive presentation of each of the potential outcomes of genetic testing (when used in different ways), allowing them to visualise the impacts on the families before deciding how they think genetic testing should be used by responding to a series of questions.
The data capture elements, mean that the resource can facilitate access to the considered views of parents and the wider public on genetic testing that are otherwise difficult to obtain but are of importance to healthcare professionals, policy makers and stakeholders. Ongoing work is being undertaken to improve the usability of the site and the readability and accessibility of the content.
| Original language | English |
|---|---|
| Media of output | Online |
| Publication status | Published - 2023 |
Keywords
- newborn screening
- public engagement
- parental experiences
- cystic fibrosis
- next generation sequencing
- extended screening
