"To perpetuate blindness!": attitudes of UK patients with inherited retinal disease towards genetic testing.
Cast your vote
You can rate an item by clicking the amount of stars they wish to award to this item.
When enough users have cast their vote on this item, the average rating will also be shown.
Your vote was cast
Thank you for your feedback
Thank you for your feedback
MetadataShow full item record
AbstractAvailability and accuracy of genetic testing in ophthalmology has increased yet the benefits are unclear especially for those conditions where cure or treatments are limited. To explore attitudes to and patients' understanding of possible advantages and disadvantages of genetic testing for inherited retinal disease, we undertook focus groups in three West Yorkshire towns in the UK. Most of our participants had retinitis pigmentosa and one of the focus groups consisted of participants from (British) Asian ethnic background. Here, we report only those attitudes which were common in all three focus groups. Some of the attitudes have already been reported in the literature. Novel findings include attitudes held towards informed choice and life planning, particularly among more severely affected participants. For example, participants appreciated that genetic testing increases informed choice and enables life planning, but these understandings tended to be in a specific sense: informed choice whether to have children and family planning in order to prevent illness recurrence. We conclude that even though these patients are not a homogeneous group, their attitudes tend to be underpinned by deep anxiety of passing their visual impairment onto their children. In this respect, they differ importantly from a small minority of the deaf who would prefer to have children with hearing loss, and from the more general population who do not believe that blindness is a "severe" enough disability to warrant avoiding having children.
Citation"To perpetuate blindness!": attitudes of UK patients with inherited retinal disease towards genetic testing. 2014, 5 (3):215-22 J Community Genet
JournalJournal of community genetics
- The relevance of ethnic monitoring in the experience of Haringey Healthcare NHS trust community family planning clinics.
- Authors: Christopher E
- Issue date: 1999 Jan
- Childhood blindness and visual loss: an assessment at two institutions including a "new" cause.
- Authors: Mets MB
- Issue date: 1999
- The effectiveness of health literacy interventions on the informed consent process of health care users: a systematic review protocol.
- Authors: Perrenoud B, Velonaki VS, Bodenmann P, Ramelet AS
- Issue date: 2015 Oct
- Low uptake of prenatal screening for Down syndrome in minority ethnic groups and socially deprived groups: a reflection of women's attitudes or a failure to facilitate informed choices?
- Authors: Dormandy E, Michie S, Hooper R, Marteau TM
- Issue date: 2005 Apr
- Patient and public attitudes towards informed consent models and levels of awareness of Electronic Health Records in the UK.
- Authors: Riordan F, Papoutsi C, Reed JE, Marston C, Bell D, Majeed A
- Issue date: 2015 Apr