title: Patient attitudes towards prenatal diagnostic testing for inherited retinal disease.
abstract: OBJECTIVE
  To explore factors that influence decision-making in relation to prenatal diagnostic testing (PDT) for inherited retinal disease (IRD).
  
  
  METHODS
  Semi-structured interviews were conducted with 50 adults with IRD, selected from a larger sample to provide a diversity of backgrounds and opinions on genetic testing. Interviews were transcribed verbatim and analysed using thematic analysis.
  
  
  RESULTS
  Mostly participants supported PDT, believing that it would provide information to help them prepare for and plan the future care of the child and the potential for early access to emerging therapies. Opposition to PDT stemmed from its use to justify termination of pregnancy, with participants feeling that it was not justified as they retained a good quality of life despite their visual impairment. Participants raised concerns about the risk of PDT and the accuracy of the results. However, most suggested that it should be available as an option for others, but for specific reasons and not as a part of routine care.
  
  
  CONCLUSIONS
  The variation in attitudes towards PDT and uncertainty about the risk and accuracy of results suggest that individuals at risk of having a child with IRD should have access to genetic counselling to support decision making.
authors.affiliation: Eye Clinic, St. James's University Hospital, Leeds, UK.
authors.forename: Khuram
authors.initials: K
authors.lastname: Ahmed
authors.affiliation: Yorkshire Regional Genetics, Chapel Allerton Hospital, Leeds, UK.
authors.forename: Mushtaq
authors.initials: M
authors.lastname: Ahmed
authors.affiliation: Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
authors.forename: Barbara
authors.initials: B
authors.lastname: Potrata
authors.affiliation: Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
authors.forename: Thomas A
authors.initials: TA
authors.lastname: Willis
authors.affiliation: Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
authors.forename: Hilary L
authors.initials: HL
authors.lastname: Grant
authors.affiliation: Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
authors.forename: Matthew J
authors.initials: MJ
authors.lastname: Allsop
authors.affiliation: Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
authors.forename: Jenny
authors.initials: J
authors.lastname: Hewison
authors.affiliation: Hull and East Yorkshire Eye Hospital, Hull, UK.
authors.forename: Louise
authors.initials: L
authors.lastname: Downey
authors.affiliation: York Teaching Hospital NHS Foundation Trust, York, UK.
authors.forename: Richard
authors.initials: R
authors.lastname: Gale
authors.affiliation: Eye Clinic, St. James's University Hospital, Leeds, UK.
authors.forename: Martin
authors.initials: M
authors.lastname: McKibbin
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D003657:Decision Making; D005260:Female; D005817:Genetic Counseling; D005820:Genetic Testing; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000523:psychology*; D036301:Qualitative Research; D011788:Quality of Life; D012164:Retinal Diseases / Q000151:congenital / Q000175:diagnosis* / Q000235:genetics; D012306:Risk; D035501:Uncertainty; D055815:Young Adult