title: 'Balance' is in the eye of the beholder: providing information to support informed choices in antenatal screening via Antenatal Screening Web Resource.
abstract: OBJECTIVE
  The Antenatal Screening Web Resource (AnSWeR) was designed to support informed prenatal testing choices by providing balanced information about disability, based on the testimonies of disabled people and their families. We were commissioned by the developers to independently evaluate the website. This paper focused on how participants evaluated AnSWeR in terms of providing balanced information.
  
  
  METHODS
  West Yorkshire.
  
  
  METHODS
  A total of 69 people were drawn from three groups: health professionals, people with personal experience of tested-for conditions (Down's syndrome, cystic fibrosis and spina bifida) and people representing potential users of the resource.
  
  
  METHODS
  Data were collected via focus groups and electronic questionnaires.
  
  
  RESULTS
  Participants believed that information about the experience of living with the tested-for conditions and terminating a pregnancy for the conditions were important to support informed antenatal testing and termination decisions. However, there were differences in opinion about whether the information about the tested-for conditions was balanced or not. Some people felt that the inclusion of photographs of people with the tested-for conditions introduced biases (both positive and negative). Many participants were also of the opinion that AnSWeR presented insufficient information on termination of an affected pregnancy to support informed choice.
  
  
  CONCLUSIONS
  This study highlighted the difficulty of designing 'balanced' information about tested-for conditions and a lack of methodology for doing so. It is suggested that AnSWeR currently provides a counterbalance to other websites that focus on the medical aspects of disability. Its aim to provide 'balanced' information would be aided by increasing the number and range of case studies available on the website.
authors.affiliation: Leeds Institute of Health Sciences, Academic Unit of Public Health, University of Leeds, Leeds, UK. s.ahmed@leeds.ac.uk
authors.forename: Shenaz
authors.initials: S
authors.lastname: Ahmed
authors.forename: Louise
authors.initials: L
authors.lastname: Bryant
authors.forename: Jenny
authors.initials: J
authors.lastname: Hewison
mesh_terms: D000328:Adult; D003657:Decision Making; D006233:Persons with Disabilities; D005260:Female; D017144:Focus Groups / Q000379:methods*; D005817:Genetic Counseling; D006801:Humans; D020407:Internet; D008297:Male; D016487:Parenting / Q000523:psychology*; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000523:psychology*; D011795:Surveys and Questionnaires