Prenatal Screening and Diagnosis

Ormond, Kelly E.

doi:10.1007/978-1-4419-5800-6_9

Cited by 4 publications

(1 citation statement)

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“…The term preparation has been used to refer to several overlapping ways in which prenatal information may change parents' approach to the rest of the pregnancy. First, preparation may refer to clinical activities, including increased surveillance, maternal-fetal interventions, and/or planning for delivery and immediate postnatal interventions (Farrelly et al, 2012;Markens, Browner, & Preloran, 2010;Ormond, 2010;Tapon, 2010). Second, preparation may refer to social and informational support, such as interacting with patient support groups, meeting other families affected by the condition, and gathering information about prognosis and quality of life (Benn & Chapman, 2010;Bratt, Järvholm, Ekman-Joelsson, Mattson, & Mellander, 2015;Helm et al, 1998;Lewis et al, 2014;Nelson Goff et al, 2013).…”

Section: Introductionmentioning

confidence: 99%

Is preparation a good reason for prenatal genetic testing? Ethical and critical questions

Michie

2020

Birth Defects Research

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As prenatal genetic testing technologies have become both easier and more accessible, women are increasingly choosing prenatal genetic testing for a reason that is largely unexamined in the clinical literature: preparation. This reasoning, offered not only from pregnant women but frequently from testing laboratories and health care providers, reflects long‐held assumptions that prenatal genetic results—properly delivered and followed with information, clinical surveillance, and/or social supports—prepare families for a child with a genetic condition, and even improve health and social outcomes for children and families. But these assumptions remain unexamined, since there are no clear definitions or recommendations for prenatal preparation. Preparation may refer to several overlapping ways in which prenatal information may change parents' approach to the rest of the pregnancy, including: (a) clinical activities, including surveillance, interventions, and delivery planning; (b) social and informational support, such as interacting with patient support groups and gathering information about quality of life; and (c) psychological “coping” or adjustments to the reality of raising a child with a genetic condition. These meanings and activities intersect and influence one another and form a foundation for postnatal family adaptation, but they are rarely parsed out in studies examining the impact of prenatal diagnosis. Based on previous work delineating conceptual models as middle terms between theory and reality, we are building a conceptual model that incorporates an empirical understanding of meanings and actions encompassed by prenatal preparation. Comparing diverse families' expectations with the resources they are offered can identify (mis)matches between priorities and approaches.

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Section: Introductionmentioning

confidence: 99%

Is preparation a good reason for prenatal genetic testing? Ethical and critical questions

Michie

2020

Birth Defects Research

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Disability and Genetics: A Disability Critique of Pre‐natal Testing and Pre‐implantation Genetic Diagnosis (PGD)

Asch

Barlevy

2012

Encyclopedia of Life Sciences

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Selecting against embryos or foetuses on the basis of predicted disability reinforces the belief that disability is inimical to a worthwhile life. The disability critique of pre‐natal testing and pre‐implantation genetic diagnosis (PGD) flows from the belief that life with disability can be valuable to individuals, their families, and society. Disability should be understood as just another form of human variation. Reassessment of the crucial elements of the parent–child relationship is fundamental to create a welcoming society for persons with varying abilities. Reforms should be made to the information provided about the lives of persons with disabilities and their families in order to enhance women and couples’ informed reproductive decision‐making. Additionally, clinicians and genetics professionals need to understand that society contributes significantly to the difficulties that people with disabilities experience in attaining full participation in family and community life. Key Concepts: Neither PGD nor any method of pre‐natal testing can accurately indicate a potential child's quality of life. The expressivist argument is only one type of disability critique, which focuses on the negative message that PGD or pre‐natal testing followed by selective embryo implantation or selective abortion sends to current persons living with disabilities. The disability critique is not primarily expressivist. Most negative facets of life with disability can be attributed to societal attitudes and practices that are open to change, and not to the medical condition itself. Clinicians and professionals should understand that they have a role in ending discrimination against people with disabilities, much as they work to practice their professions without sexism or racism. Disability, like sex, race, and ethnicity, is a legitimate, respectable form of human variation. Preventing the incidence of disability is quite different from preventing the existence of persons with disability. Research indicates that people with disabilities and their families fare relatively the same as the rest of the population. The norms of good parenting include fostering and supporting the uniqueness of individual children, with all their mix of talents, personalities, strengths, and problems. Information about the nonmedical facets of life with disability and connections to disability support groups need to be provided to prospective parents deciding about their reproductive future.

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Public Health Genomics

O’Neill

2010

Handbook of Genomics and the Family

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Prenatal Screening and Diagnosis

Cited by 4 publications

References 68 publications

Is preparation a good reason for prenatal genetic testing? Ethical and critical questions

Is preparation a good reason for prenatal genetic testing? Ethical and critical questions

Disability and Genetics: A Disability Critique of Pre‐natal Testing and Pre‐implantation Genetic Diagnosis (PGD)

Public Health Genomics

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