| References |
|
|
Anido A,
Carlson LM,
Taft L and
Sherman SLJ
(2005)
Women's attitudes toward testing for fragile X carrier status: a qualitative analysis.
Journal of Genetic Counseling
14:
295–306.
|
|
|
Bache I,
Brondum-Nielsen K and
Tommerup N
(2007)
Genetic counselling in adult carriers of a balanced chromosomal rearrangement ascertained in childhood: experiences from a nationwide counselling on of translocation carriers.
Genetics in Medicine
9:
185–187.
|
|
|
Borry P,
Fryns JP,
Schotsmans P and
Dierickx K
(2006)
Carrier testing in minors: a systematic review of guidelines and position papers.
European Journal of Human Genetics
14:
133–138.
|
|
|
Clarke A,
Richards M,
Kerzin-Storrar L et al.
(2005)
Genetic professionals’ reports of nondisclosure of genetic risk information within families.
European Journal of Human Genetics
13:
556–562.
|
|
|
Denayer L,
De Boeck K,
Evers-Kiebooms G and
Van den Berghe H
(1992)
The transfer of information about genetic transmission to brothers and sisters of parents with a CF-child.
Birth Defects: Original Article Series
28:
149–158.
|
|
|
Denayer L,
Welkenhuysen M,
Evers-Kiebooms G,
Cassiman JJ and
Van den Berghe H
(1996)
The CF carrier status is not associated with a diminished self concept or increased anxiety: results of psychometric testing after at least one year.
Clinical Genetics
49:
232–236.
|
|
|
Evers-Kiebooms G,
Denayer L,
Welkenhuysen M,
Cassiman JJ and
Van den Berghe H
(1994)
A stigmatizing effect of the carrier status for cystic fibrosis?
Clinical Genetics
46:
336–343.
|
|
|
Fanos JH and
Johnson JP
(1995)
Barriers to carrier testing for adult cystic fibrosis sibs: the importance of not knowing.
American Journal of Medical Genetics
59:
85–91.
|
|
|
book
Featherstone K,
Atkinson PA,
Bharadwaj A and
Clarke AJ
(2006)
Risky Relations: Family and Kinship in the Era of New Genetics.
Oxford: Berg.
|
|
|
Fitzpatrick C and
Barry C
(1986)
Communication within families about Duchenne muscular dystrophy.
Developmental Medicine and Child Neurology
28:
596–599.
|
|
|
Gregory M,
Boddington P,
Dimond R et al.
(2007)
Communicating about haemophilia within the family: the importance of context and of experience.
Haemophilia
13:
189–198.
|
|
|
Henneman L,
Kooij L,
Bouman K and
Ten Kate LP
(2002)
Personal experiences of cystic fibrosis (CF) carrier couples prospectively identified in CF families.
American Journal of Medical Genetics
110:
324–331.
|
|
|
James CA,
Hadley DW,
Holtzman NA and
Winkelstein JA
(2006)
How does the mode of inheritance of a genetic condition influence families? A study of guilt, blame, stigma, and understanding of inheritance and reproductive risks in families with X-linked and autosomal recessive diseases.
Genetics in Medicine
8:
234–242.
|
|
|
Kerzin-Storrar L,
Wright C,
Williamson PR et al.
(2002)
Comparison of genetic services with and without genetic registers: access and attitudes to genetic counselling services among relatives of genetic clinic patients.
Journal of Medical Genetics
39:
e85.
|
|
|
McConkie-Rosell A,
Spiridigliozzi GA,
Sullivan JA,
Dawson DV and
Lachiewicz AM
(2001)
Longitudinal study of the carrier testing process for fragile X syndrome: perceptions and coping.
American Journal of Medical Genetics
98:
37–45.
|
|
|
Miller FA,
Robert JS and
Hayeems RZ
(2009)
Questioning the consensus: managing carrier status results generated by newborn screening.
American Journal of Public Health
99:
210–215.
|
|
|
Ormond KE,
Mills PL,
Lester LA and
Ross LF
(2003)
Effect of family history on disclosure patterns of cystic fibrosis carrier status.
American Journal of Medical Genetics. Part C, Seminars in Medical Genetics
119C:
70–77.
|
|
|
Shaw A and
Hurst JA
(2008)
‘I don't see any point in telling them’: attitudes to sharing genetic information in the family and carrier testing of relatives among British Pakistani adults referred to a genetics clinic.
Ethnicity and Health
3:
1–20.
|
|
|
Sorenson JR,
Cheuvront B,
DeVellis B et al.
(1997)
Acceptance of home and clinic-based cystic fibrosis carrier education and testing by first, second, and third degree relatives of cystic fibrosis patients.
American Journal of Medical Genetics
70:
121–129.
|
|
|
Sorenson JR,
Jennings-Grant T and
Newman J
(2003)
Communication about carrier testing within hemophilia A families.
American Journal of Medical Genetics. Part C, Seminars in Medical Genetics
119C:
3–10.
|
|
|
Surh LC,
Cappelli M,
MacDonald NE,
Mettler G and
Dales RE
(1994)
Cystic fibrosis carrier screening in a high-risk population. Participation based on a traditional recruitment process.
Archives of Pediatrics and Adolescent Medicine
148:
632–637.
|
|
|
Van Rijn MA,
De Vries BB,
Tibben A et al.
(1997)
DNA testing for fragile X syndrome: implications for parents and family.
Journal of Medical Genetics
34:
907–911.
|
|
|
Varekamp I,
Suurmeijer TP,
Brocker-Vriends AH et al.
(1990)
Carrier testing and prenatal diagnosis for hemophilia: experiences and attitudes of 549 potential and obligate carriers.
American Journal of Medical Genetics
37:
147–154.
|
| Further Reading |
|
|
Ayme S,
Macquart-Moulin G,
Julian-Reynier C,
Chabal F and
Giraud F
(1993)
Diffusion of information about genetic risk within families.
Neuromuscular Disorders
3:
571–574.
|
|
|
Decruyenaere M,
Evers-Kiebooms G,
Denayer L and
Welkenhuysen M
(1998)
Uptake and impact of carrier testing for cystic fibrosis.
Community Genetics
1:
23–35.
|
|
|
Eggers S,
Pavanello RC,
Passos-Bueno MR and
Zatz M
(1999)
Genetic counselling for childless women at risk for Duchenne muscular dystrophy.
American Journal of Medical Genetics
86:
447–453.
|
|
|
Hayeems RZ,
Bytautas JP and
Miller FA
(2008)
A systematic review of the effects of disclosing carrier results generated through newborn screening.
Journal of Genetic Counselling
17:
538–549.
|
|
|
Lafayette D,
Abuelo D,
Passero MA and
Tantravahi U
(1999)
Attitudes toward cystic fibrosis carrier and prenatal testing and utilization of carrier testing among relatives of individuals with cystic fibrosis.
Journal of Genetic Counseling
8:
17–36.
|
|
|
McConkie-Rosell A,
Robinson H,
Wake S et al.
(1995)
Dissemination of genetic risk information to relatives in the fragile X syndrome: guidelines for genetic counselling.
American Journal of Medical Genetics
59:
426–430.
|
|
|
Tedgard U
(1998)
Carrier testing and prenatal diagnosis of haemophilia – utilisation and psychological consequences.
Haemophilia
4:
365–369.
|
|
|
Williams JK and
Schutte DL
(1997)
Benefits and burdens of genetic carrier identification.
Western Journal of Nursing Research
19:
71–81.
|
|
|
Wilson BJ,
Forrest K,
van Teijlingen ER et al.
(2004)
Family communication about genetic risk: the little that is known.
Community Genetics
7:
15–24.
|
|
|
Wolff G,
Back E,
Arleth S and
Rapp-Korner U
(1989)
Genetic counselling in families with inherited balanced translocations: experience with 36 families.
Clinical Genetics
35:
404–416.
|
