Disability Experiences and Perspectives Regarding Reproductive Decisions, Parenting, and the Utility of Genetic Services: a Qualitative Study
Genetic counselors adopt seemingly contradictory roles: advocating for individuals with genetic conditions while offering prenatal diagnosis and the option of selective termination to prevent the birth of a child with a disability. This duality contributes to the tension between the disability and c...
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Published in | Journal of genetic counseling Vol. 27; no. 6; pp. 1360 - 1373 |
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Main Authors | , , , , , |
Format | Journal Article |
Language | English |
Published |
New York
Springer US
01.12.2018
Blackwell Publishing Ltd |
Subjects | |
Online Access | Get full text |
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Abstract | Genetic counselors adopt seemingly contradictory roles: advocating for individuals with genetic conditions while offering prenatal diagnosis and the option of selective termination to prevent the birth of a child with a disability. This duality contributes to the tension between the disability and clinical genetics communities. Varying opinions exist amongst the disability community: some value genetic services while others are opposed. However, there is limited research exploring the opinions of individuals with a disability regarding issues related to reproduction and genetic services in the context of personal experience. This exploratory qualitative study involved interviews with seven women and three men who self-identify as having a disability. We sought to gain their perspectives on experiences with disability, thoughts about reproduction and parenting, and perceptions of genetic services. Transcripts of the interviews were analyzed thematically using qualitative content analysis. Data analysis showed that societal views of disability affected the lived experience and impacted reproductive decision-making for those with a disability. It also showed differing interest in genetic services. Concerns about the perceived collective implications of genetic services were also raised. These findings contribute to the understanding of the disability perspective toward reproductive decision-making and genetic services. A further goal is to promote a meaningful dialogue between the genetics and disability communities, with the potential to enhance the genetic and reproductive care provided to individuals with disabilities. |
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AbstractList | Genetic counselors adopt seemingly contradictory roles: advocating for individuals with genetic conditions while offering prenatal diagnosis and the option of selective termination to prevent the birth of a child with a disability. This duality contributes to the tension between the disability and clinical genetics communities. Varying opinions exist amongst the disability community: some value genetic services while others are opposed. However, there is limited research exploring the opinions of individuals with a disability regarding issues related to reproduction and genetic services in the context of personal experience. This exploratory qualitative study involved interviews with seven women and three men who self‐identify as having a disability. We sought to gain their perspectives on experiences with disability, thoughts about reproduction and parenting, and perceptions of genetic services. Transcripts of the interviews were analyzed thematically using qualitative content analysis. Data analysis showed that societal views of disability affected the lived experience and impacted reproductive decision‐making for those with a disability. It also showed differing interest in genetic services. Concerns about the perceived collective implications of genetic services were also raised. These findings contribute to the understanding of the disability perspective toward reproductive decision‐making and genetic services. A further goal is to promote a meaningful dialogue between the genetics and disability communities, with the potential to enhance the genetic and reproductive care provided to individuals with disabilities. |
Author | Chitayat, D. Sappleton, K. Ignagni, E. Anstey, K. Roadhouse, C. Shuman, C. |
Author_xml | – sequence: 1 givenname: C. orcidid: 0000-0002-5224-0028 surname: Roadhouse fullname: Roadhouse, C. email: roadhouse@hhsc.ca organization: Division of Clinical and Metabolic Genetics, The Hospital for Sick Children, Department of Molecular Genetics, University of Toronto, Department of Genetic Counselling, The Hospital for Sick Children, Department of Pediatrics, Clinical Genetics Program, McMaster University Medical Center and McMaster Children’s Hospital – sequence: 2 givenname: C. surname: Shuman fullname: Shuman, C. organization: Division of Clinical and Metabolic Genetics, The Hospital for Sick Children, Department of Molecular Genetics, University of Toronto, Department of Genetic Counselling, The Hospital for Sick Children – sequence: 3 givenname: K. surname: Anstey fullname: Anstey, K. organization: Clinical Ethics, Alberta Health Services, Calgary AB, Division of Clinical Public Health, Dalla Lana School of Public Health, University of Toronto, Department of Occupational Science and Therapy, University of Toronto – sequence: 4 givenname: K. surname: Sappleton fullname: Sappleton, K. organization: Centre for Innovation and Excellence in Child & Family Centered Care, The Hospital for Sick Children – sequence: 5 givenname: D. surname: Chitayat fullname: Chitayat, D. organization: Division of Clinical and Metabolic Genetics, The Hospital for Sick Children, Department of Molecular Genetics, University of Toronto, Prenatal Diagnosis and Medical Genetics Program, Department of Obstetrics and Gynecology, Mount Sinai Hospital – sequence: 6 givenname: E. surname: Ignagni fullname: Ignagni, E. organization: School of Disability Studies, Ryerson University |
BackLink | https://www.ncbi.nlm.nih.gov/pubmed/29909595$$D View this record in MEDLINE/PubMed |
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Copyright | National Society of Genetic Counselors, Inc. 2018 2018 National Society of Genetic Counselors, Inc. Journal of Genetic Counseling is a copyright of Springer, (2018). All Rights Reserved. |
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Keywords | Disability Attitudes Genetic counseling Parenthood Prenatal diagnosis Experiential knowledge |
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SubjectTerms | Attitudes Biomedical and Life Sciences Biomedicine Childbirth & labor Children with disabilities Clinical decision making Clinical Psychology Community Content analysis Data processing Decision making Disability Ethics Experiential knowledge Family planning Genetic counseling Gynecology Human Genetics Medical diagnosis Original Research Parenthood Parents & parenting People with disabilities Prenatal care Prenatal diagnosis Public Health Qualitative research Termination |
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Title | Disability Experiences and Perspectives Regarding Reproductive Decisions, Parenting, and the Utility of Genetic Services: a Qualitative Study |
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