Laboratory Policies and Practices for the Genetic Testing of Children: A Survey of the Helix Network

Autor: Dorothy C. Wertz, Philip R. Reilly
Rok vydání: 1997
Předmět:
Male
Muscular Dystrophies
Laboratory policies
Adult-onset disorders
Surveys and Questionnaires
Epidemiology
Genetics(clinical)
Parental Consent
Age of Onset
Child
Genetics (clinical)
medicine.diagnostic_test
Genetic Carrier Screening
Health Policy
Age Factors
Requisition
Test (assessment)
Huntington Disease
Child
Preschool

Female
Parental consent
Research Article
medicine.medical_specialty
Adolescent
Legal aspects of testing
Children's assent/consent
Genetic counseling
Genes
Recessive

Genetic Counseling
Risk Assessment
Testing children
Genetics
medicine
Humans
Ethics
Medical

Genetic Testing
Health policy
Genetic testing
Genetic Services
business.industry
Public health
Genetic Diseases
Inborn

Infant
United States
Social Control
Formal

Fragile X Syndrome
Family medicine
Personal Autonomy
Laboratories
business
Zdroj: The American Journal of Human Genetics. 61:1163-1168
ISSN: 0002-9297
DOI: 10.1086/301593
Popis: SummaryIn order to discover whether laboratories have policies regarding the testing of unaffected children, we surveyed all laboratories registered with Helix, a national network 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
Databáze: OpenAIRE