Linked Life Data

9345088

Source:http://linkedlifedata.com/resource/pubmed/id/9345088

Statements in which the resource exists as a subject.
PredicateObject
rdf:type
lifeskim:mentions
pubmed:issue
5
pubmed:dateCreated
1997-12-12
pubmed:abstractText
In order to discover whether laboratories have policies regarding the testing of unaffected children, we surveyed all laboratories registered with Helix, a national net-work of DNA diagnostic laboratories. Of 186 laboratories asked to respond anonymously to a four-page questionnaire, 156 (84%) replied. A screening question removed 51 laboratories that provided no clinical services. Of the remaining 105, 92% said that their requisition forms asked the person's age. Substantial minorities had policies for the testing of minors for late-onset disorders (46%), for carrier status for recessive disorders (33%), or for disorders for which the test offers no medical benefit within 3 years (33%). Most laboratories are responsive to parental requests. For 12 of 13 late-onset disorders, the majority of laboratories that offered testing had had requests to test children. The majority had tested healthy children, <12 years of age, for eight disorders. Approximately 22% had tested children, <12 years of age, for Huntington disease. Majorities had received requests to test healthy children for carrier status for 10 of 15 recessive or X-linked disorders and had tested children, <12 years of age, for 6 of these disorders, including cystic fibrosis, hemophilia A, fragile X syndrome, and Duchenne muscular dystrophy. Approximately 45% of the laboratories occasionally had provided tests directly to consumers. In view of the possibility that the harms of presymptomatic diagnoses of children sometimes may outweigh the benefits, our results suggest a need for consistent laboratory policies designed for the best interests of the child and the family.
pubmed:grant
pubmed:commentsCorrections
pubmed:keyword
pubmed:language
eng
pubmed:journal
pubmed:citationSubset
E
pubmed:status
MEDLINE
pubmed:month
Nov
pubmed:issn
0002-9297
pubmed:author
pubmed:issnType
Print
pubmed:volume
61
pubmed:owner
NLM
pubmed:authorsComplete
Y
pubmed:pagination
1163-8
pubmed:dateRevised
2009-11-19
pubmed:meshHeading
pubmed-meshheading:9345088-Adolescent, pubmed-meshheading:9345088-Age Factors, pubmed-meshheading:9345088-Age of Onset, pubmed-meshheading:9345088-Child, pubmed-meshheading:9345088-Child, Preschool, pubmed-meshheading:9345088-Ethics, Medical, pubmed-meshheading:9345088-Female, pubmed-meshheading:9345088-Fragile X Syndrome, pubmed-meshheading:9345088-Genes, Recessive, pubmed-meshheading:9345088-Genetic Counseling, pubmed-meshheading:9345088-Genetic Diseases, Inborn, pubmed-meshheading:9345088-Genetic Services, pubmed-meshheading:9345088-Genetic Testing, pubmed-meshheading:9345088-Health Policy, pubmed-meshheading:9345088-Heterozygote Detection, pubmed-meshheading:9345088-Humans, pubmed-meshheading:9345088-Huntington Disease, pubmed-meshheading:9345088-Infant, pubmed-meshheading:9345088-Laboratories, pubmed-meshheading:9345088-Male, pubmed-meshheading:9345088-Muscular Dystrophies, pubmed-meshheading:9345088-Parental Consent, pubmed-meshheading:9345088-Personal Autonomy, pubmed-meshheading:9345088-Questionnaires, pubmed-meshheading:9345088-Risk Assessment, pubmed-meshheading:9345088-Social Control, Formal, pubmed-meshheading:9345088-United States
pubmed:year
1997
pubmed:articleTitle
Laboratory policies and practices for the genetic testing of children: a survey of the Helix network.
pubmed:affiliation
The Shriver Center, Waltham, MA 02254, USA. dwertz@shriver.org
pubmed:publicationType
Journal Article, Research Support, U.S. Gov't, P.H.S.