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CF carrier testing: Experience of relatives
Author(s) -
Callanan Nancy P.,
Bloom Diane,
Sorenson James R.,
DeVellis Brenda M.,
Cheuvront Brian
Publication year - 1995
Publication title -
journal of genetic counseling
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.867
H-Index - 52
eISSN - 1573-3599
pISSN - 1059-7700
DOI - 10.1007/bf01408632
Subject(s) - genetic counseling , family history , genetic testing , carrier testing , medicine , population , family medicine , telephone counseling , clinical psychology , psychology , psychiatry , genetics , intervention (counseling) , environmental health , surgery , prenatal diagnosis , pregnancy , fetus , biology
Consensus exists that genetic counseling and CF carrier testing should be offered to individuals with a positive family history of CF. To learn more about their experience with genetic counseling and testing we conducted a series of structured telephone interviews and focus group discussions with individuals and couples who had undergone genetic counseling and carrier testing because of a family history of CF. Traditional genetic counseling appears to have been effective for this population. Subjects generally report having a positive counseling experience and few difficulties upon learning their carrier status. Subjects were quite knowledgeable about CF and their carrier risk and were highly motivated to seek testing. They may not be representative of all individuals with a family history of CF however. For carriers, concerns about whether and when to have children tested, and concerns about insurance implications of carrier status may emerge sometime after the initial counseling. Strategies for addressing these concerns and for providing efficient and effective education and genetic counseling for people with a family history of CF need to be developed.