2019Carolina Digital Repository (University of North Carolina at Chapel Hill)Open access

Factors Influencing Decision-Making in Prenatal Screening for Down Syndrome

Anna E. Bauer

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Abstract

Objectives: This paper aims to determine what factors pregnant women and their partners use to determine whether to undergo prenatal screening for Down syndrome, and what further information they need to make informed decisions. Methods: Medical and social science databases were used to identify articles related to uptake of prenatal screening for Down syndrome and decision-making. Results: The majority of studies were qualitative survey or interview studies. Factors that influenced decisions included preexisting risk, anxiety, ability for action, personal values, disability experiences, demographic characteristics, family and friends, medical providers, trust in the medical establishment, and norms around routine care. Conclusions: As prenatal screening improves decision-making factors must be considered when providing information to ensure informed decision-making. Policy discussions should include multiple stakeholders, including women and their partners, medical professionals, genetic counselors, families affected by disability, and people with Down syndrome. Policies and practices must ultimately support both the reproductive rights of women and adequate, nonstigmatizing services for children.

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Objectives: This paper aims to determine what factors pregnant women and their partners use to determine whether to undergo prenatal screening for Down syndrome, and what further information they need to make informed decisions. Methods: Medical and social science databases were used to identify articles related to uptake of prenatal screening for Down syndrome and decision-making. Results: The majority of studies were qualitative survey or interview studies. Factors that influenced decisions included preexisting risk, anxiety, ability for action, personal values, disability experiences, demographic characteristics, family and friends, medical providers, trust in the medical establishment, and norms around routine care. Conclusions: As prenatal screening improves decision-making factors must be considered when providing information to ensure informed decision-making. Policy discussions should include multiple stakeholders, including women and their partners, medical professionals, genetic counselors, families affected by disability, and people with Down syndrome. Policies and practices must ultimately support both the reproductive rights of women and adequate, nonstigmatizing services for children.

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Available abstract

Objectives: This paper aims to determine what factors pregnant women and their partners use to determine whether to undergo prenatal screening for Down syndrome, and what further information they need to make informed decisions. Methods: Medical and social science databases were used to identify articles related to uptake of prenatal screening for Down syndrome and decision-making. Results: The majority of studies were qualitative survey or interview studies. Factors that influenced decisions included preexisting risk, anxiety, ability for action, personal values, disability experiences, demographic characteristics, family and friends, medical providers, trust in the medical establishment, and norms around routine care. Conclusions: As prenatal screening improves decision-making factors must be considered when providing information to ensure informed decision-making. Policy discussions should include multiple stakeholders, including women and their partners, medical professionals, genetic counselors, families affected by disability, and people with Down syndrome. Policies and practices must ultimately support both the reproductive rights of women and adequate, nonstigmatizing services for children.

Key concepts: Medicine, Computer science

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