GuidelineJournal of genetic counseling2005
Policy recommendations for carrier testing and predictive testing in childhood: a distinction that makes a real difference.
Guideline in Journal of genetic counseling, 2005. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
What it found
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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
5 citing papers in PubMed.
- Developmental and behavioral pediatricians' attitudes toward screening for fragile X.American journal on intellectual and developmental disabilities · 2013Article
- Fragile X screening: attitudes of genetic health professionals.American journal of medical genetics. Part A · 2009Article
- Genetic testing of children at risk for adult onset conditions: when is testing indicated?Journal of genetic counseling · 2008Article
- Adolescent carrier testing in practice: the impact of legal rulings and problems with "gillick competence".Journal of genetic counseling · 2008Article
- Working up policy: the use of specific disease exemplars in formulating general principles governing childhood genetic testing.Health care analysis : HCA : journal of health philosophy and policy · 2006Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The genetic testing of children raises many ethical concerns. This paper examines how five position statements from Canada, UK and USA, which present guidelines for good practice in this area produce different recommendations for carrier testing and predictive testing. We find that the genetic information generated through carrier testing is routinely presented as less serious than that generated from predictive testing. Additionally, the reproductive implications of predictive testing are also routinely erased. Consequently, the papers argue strongly against predictive testing but advise caution against carrier testing in somewhat weaker terms. We argue that these differences rest on assumptions about the status of reproduction in people's lives and on an ethical stance that foregrounds the self over others. We propose that questioning the crude and sharp distinction between carrier and predictive testing in principle may enable practitioners and parents/families to make more nuanced decisions in practice.
Indexed as
Identifiers
16047090What 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.