ArticleHealth expectations : an international journal of public participation in health care and health policy2007
'Balance' is in the eye of the beholder: providing information to support informed choices in antenatal screening via Antenatal Screening Web Resource.
Article in Health expectations : an international journal of public participation in health care and health policy, 2007. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
14 citing papers in PubMed.
- Preferences for Peer Support Amongst Families Engaged in Paediatric Screening Programmes: The Perspectives of Parents Involved in Screening for Type 1 Diabetes in Children Aged 3-13.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Preconception expanded carrier screening: Impact of information presented by text or video on genetic knowledge and attitudes.Journal of genetic counseling · 2021Article
- "I didn't take it too seriously because I'd just never heard of it": Experiential knowledge and genetic screening for thalassaemia in the UK.Journal of genetic counseling · 2019Article
- Disability Experiences and Perspectives Regarding Reproductive Decisions, Parenting, and the Utility of Genetic Services: a Qualitative Study.Journal of genetic counseling · 2018Article
- Impairment Experiences, Identity and Attitudes Towards Genetic Screening: the Views of People with Spinal Muscular Atrophy.Journal of genetic counseling · 2018Article
- Experience as knowledge: Disability, distillation and (reprogenetic) decision-making.Social science & medicine (1982) · 2017Article
- Presenting life with cystic fibrosis: a Q-methodological approach to developing balanced, experience-based prenatal screening information.Health expectations : an international journal of public participation in health care and health policy · 2015Article
- Imagined futures: how experiential knowledge of disability affects parents' decision making about fetal abnormality.Health expectations : an international journal of public participation in health care and health policy · 2012Article
- What is a "balanced" description? Insight from parents of individuals with down syndrome.Journal of genetic counseling · 2012Article
- The relationship between the genetic counseling profession and the disability community: a commentary.American journal of medical genetics. Part A · 2011Review
- Inside 'Inside View': reflections on stimulating debate and engagement through a multimedia live theatre production on the dilemmas and issues of pre-natal screening policy and practice.Health expectations : an international journal of public participation in health care and health policy · 2011Article
- Prenatal testing for Down syndrome: comparison of screening practices in the UK and USA.Journal of genetic counseling · 2010Article
- Decisions about testing and termination of pregnancy for different fetal conditions: a qualitative study of European White and Pakistani mothers of affected children.Journal of genetic counseling · 2008Article
- Considering 'balance' in information.Health expectations : an international journal of public participation in health care and health policy · 2007Article
Corrections and comments
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Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesThe 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.
settingWest Yorkshire.
participantsA 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.
methodData were collected via focus groups and electronic questionnaires.
resultsParticipants 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.
conclusionThis 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.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.