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DOI 10.1016/j.dhjo.2022.101401

Медицинская библиотека · Disability and health journal · 2022

Recommendations to improve the patient experience and avoid bias when prenatal screening/testing.

Meredith Stephanie, Brackett Scotti, Diaz Keith M, Freeman Kathleen G, Huggins Erin, Khan Hadia, Leach Mark W, Levitz Mitchell, Michie Marsha, Onufer Janet, Skotko Brian G, Smith Leah, Nicole White A, Waller Tracy, Ayers Kara, Prenatal Subcommittee of the Center for Dignity in Healthcare for People with Disabilities

СтатьяПоддержка службы здравоохранения СШАПеревод в очереди

Аннотация

While prenatal screening and testing have expanded substantially over the past decade and provide access to more genetic information, expectant parents are more likely to describe the diagnosis experience as negative than positive. In addition, the conversations that take place during these experiences sometimes reflect unconscious bias against people with disabilities. Consequently, an interdisciplinary committee of experts, including people with disabilities, family members, disability organization leaders, healthcare and genetics professionals, and bioethicists, reviewed selected published and gray literature comparing the current state of the administration of prenatal testing to the ideal state. Subsequently, the interdisciplinary team created recommendations for clinicians, public health agencies, medical organizations, federal agencies, and other stakeholders involved with administering prenatal screening and testing to create better patient experiences; conduct training for healthcare professionals; create, enforce, and fund policies and guidelines; and engage in more robust data collection and research efforts.

Для цитирования: Meredith Stephanie, Brackett Scotti, Diaz Keith M, Freeman Kathleen G, Huggins Erin, Khan Hadia, Leach Mark W, Levitz Mitchell, Michie Marsha, Onufer Janet, Skotko Brian G, Smith Leah, Nicole White A, Waller Tracy, Ayers Kara, Prenatal Subcommittee of the Center for Dignity in Healthcare for People with Disabilities. Recommendations to improve the patient experience and avoid bias when prenatal screening/testing.. Disability and health journal. 2022. DOI: 10.1016/j.dhjo.2022.101401.

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