Testing Carrier Status in Siblings of Patients with Cystic Fibrosis

Overview

Journal Arch Dis Child

Specialty Pediatrics

Date 1995 Feb 1

PMID 7702387

Citations 11

Authors

I Balfour-Lynn

S Madge

R Dinwiddie

Affiliations

Soon will be listed here.

Abstract

Altogether 114 parents of patients attending a cystic fibrosis clinic and 27 regional genetics units were surveyed for their views on whether healthy siblings should be tested for carrier status during childhood. Most parents wanted to know their child's carrier status and felt it was their right; almost all would tell the children if they were carriers. However, 37% of the units never tested siblings and 40% said the parents had no right to this knowledge. Furthermore, 60% would withhold the information from parents.

Citing Articles

"They Just Want to Know" - Genetic Health Professionals' Beliefs About Why Parents Want to Know their Child's Carrier Status.

Vears D, Delany C, Massie J, Gillam L J Genet Couns. 2017; 26(6):1314-1323.

PMID: 28161759 DOI: 10.1007/s10897-017-0070-2.

Why Do Parents Want to Know their Child's Carrier Status? A Qualitative Study.

Vears D, Delany C, Massie J, Gillam L J Genet Couns. 2016; 25(6):1257-1266.

PMID: 27193897 DOI: 10.1007/s10897-016-9964-7.

Genetic testing of children for adult-onset conditions: opinions of the British adult population and implications for clinical practice.

Shkedi-Rafid S, Fenwick A, Dheensa S, Lucassen A Eur J Hum Genet. 2014; 23(10):1281-5.

PMID: 25370041 PMC: 4592073. DOI: 10.1038/ejhg.2014.221.

Carrier testing in children: exploration of genetic health professionals' practices in Australia.

Vears D, Delany C, Gillam L Genet Med. 2014; 17(5):380-5.

PMID: 25232847 DOI: 10.1038/gim.2014.116.

When to tell and test for genetic carrier status: perspectives of adolescents and young adults from fragile X families.

Wehbe R, Spiridigliozzi G, Heise E, Dawson D, McConkie-Rosell A Am J Med Genet A. 2009; 149A(6):1190-9.

PMID: 19449413 PMC: 2756686. DOI: 10.1002/ajmg.a.32840.

References

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