Feelings Associated with Being a Carrier and Characteristics of Reproductive Decision Making in Women Known to Be Carriers of X-linked Conditions

Qualitative data were collected from 14 women known to be carriers of an X-linked condition associated with ‘serious’ disability on feelings about being a carrier and impact on reproductive decisions. Guilt and responsibility were commonly expressed by carriers about issues surrounding pregnancy. Personal experience of the condition influenced their approach to reproductive decisions. Those who had lived with an affected brother were more concrete in their decisions to avoid having an affected child compared to those with less personal experience of the condition. It is concluded that feelings of guilt associated with difficult reproductive decisions are reflected in the strong sense of responsibility attached to being a carrier. Personal experience of the condition has a clear influence on reproductive decisions of X-linked carriers.

[1]  Kerry Chamberlain,et al.  Qualitative Health Psychology: Theories and Methods , 1999 .

[2]  M. Bobrow,et al.  Psychological impact of population-based carrier testing for cystic fibrosis: 3-year follow-up , 1996, The Lancet.

[3]  D. Weatherall.  The Troubled Helix: Social and Psychological Implications of the New Human Genetics , 1996 .

[4]  G. Evers‐Kiebooms,et al.  The CF carrier status is not associated with a diminished self‐concept or increased anxiety: results of psychometric testing after at least 1 year , 1996, Clinical genetics.

[5]  Jonathan A. Smith,et al.  Rethinking Methods in Psychology , 1995 .

[6]  F. Verhage,et al.  Characteristics of the postcounseling reproductive decision-making process: an explorative study. , 1991, American journal of medical genetics.

[7]  H. Duivenvoorden,et al.  Factors influencing the reproductive decision after genetic counseling. , 1990, American journal of medical genetics.

[8]  S. Kessler.  Psychological aspects of genetic counseling: VI. A critical review of the literature dealing with education and reproduction. , 1989, American journal of medical genetics.

[9]  R. Witte.  The psychosocial impact of a progressive physical handicap and terminal illness (Duchenne muscular dystrophy) on adolescents and their families. , 1985, The British journal of medical psychology.

[10]  C. Scriver,et al.  A private view of heterozygosity: eight-year follow-up study on carriers of the Tay-Sachs gene detected by high school screening in Montreal. , 1984, American journal of medical genetics.

[11]  R. Harris,et al.  Attitudes of patients after "genetic" termination of pregnancy. , 1981, British medical journal.

[12]  K. Hirschhorn,et al.  Analysis of a follow‐up study of genetic counseling , 1980, Clinical genetics.

[13]  A. Emery,et al.  Prospective study of genetic counselling. , 1979, British medical journal.

[14]  S. Olshansky.  Chronic Sorrow: A Response to Having a Mentally Defective Child , 1962 .

[15]  Jonathan A. Smith,et al.  Doing Interpretative Phenomenological Analysis , 1999 .

[16]  T. Marteau,et al.  Long-term cognitive and emotional impact of genetic testing for carriers of cystic fibrosis: the effects of test result and gender. , 1997, Health psychology : official journal of the Division of Health Psychology, American Psychological Association.

[17]  T. Marteau,et al.  The troubled helix: Evaluating carrier testing: objectives and outcomes , 1996 .

[18]  M. Richards.  The troubled helix: Families, kinship and genetics , 1996 .

[19]  J. L. Smith,et al.  Semi-Structured Interviewing and Qualitative Analysis , 1995 .

[20]  G. Evers-Kierbooms.  Risk communication in genetic counselling and genetic risk perception , 1995 .

[21]  A. Lippman,et al.  Prenatal Genetic Testing and Screening: Constructing Needs and Reinforcing Inequities , 2020, American Journal of Law & Medicine.

[22]  E. Parsons.  Living with Duchenne muscular dystrophy : women's understandings of diability and risk. , 1990 .

[23]  M. Golbus,et al.  Decision making: whether or not to have prenatal diagnosis and abortion for X-linked conditions. , 1985, American journal of medical genetics.

[24]  I. Pullen,et al.  Psychological aspects of genetic counselling , 1984 .

[25]  Jeffrey N. Katz.  Reproductive Pasts, Reproductive Futures: Genetic Counseling and Its Effectiveness , 1982, The Yale Journal of Biology and Medicine.

[26]  S. Targum.  Psychotherapeutic considerations in genetic counseling. , 1981, American journal of medical genetics.

[27]  J. Sorenson,et al.  Reproductive pasts, reproductive futures. Genetic counseling and its effectiveness. , 1981, Birth defects original article series.

[28]  F. Fraser,et al.  Genetic counseling: provision and reception of information. , 1979, American journal of medical genetics.

[29]  J. Opitz,et al.  Genetic counseling -- the postcounseling period: II. Making reproductive choices. , 1979, American journal of medical genetics.

[30]  F. Fraser,et al.  Genetic counseling--the postcounseling period: I. Parents' perceptions of uncertainty. , 1979, American journal of medical genetics.