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Article

Genetic Testing on Patients with Developmental Delay: A Preliminary Study from the Perspective of Physicians

1
Department of Medical Education and Humanities, School of Medicine, Kyung Hee University, Seoul 02447, Korea
2
Department of Physical Medicine & Rehabilitation, Daejeon St. Mary’s Hospital, College of Medicine, The Catholic University of Korea, Seoul 06591, Korea
3
Korea National Institute for Bioethics Policy, Seoul 04522, Korea
*
Author to whom correspondence should be addressed.
Academic Editor: Mei-Yueh Lee
Healthcare 2022, 10(7), 1236; https://doi.org/10.3390/healthcare10071236
Received: 11 May 2022 / Revised: 29 June 2022 / Accepted: 30 June 2022 / Published: 2 July 2022
(This article belongs to the Special Issue Patient Care Assessment)
This study aimed to discover and propose solutions to various decision-making problems, including obtaining consent, encountered by physicians when administering genetic testing to patients with disabilities. A preliminary survey and focus group interviews (FGIs) were conducted with 27 specialists who had 5–25 years of clinical experience in rehabilitation medicine, pediatrics, and obstetrics and gynecology, regarding their experience in providing genetic testing to people with developmental disabilities. This included the “role of medical staff in the patient’s decision-making process”, “difficulty of the consent process for genetic testing”, and so forth. Some limitations were identified in the genetic testing communication process for patients with disabilities. Although providing information corresponding to the level of understanding of each person and accurately evaluating the correct consenting ability is important, the usage rate of auxiliary tools, such as booklets and videos, was only 50.0%. Additionally, there were concerns regarding the marriage prospects of people with disabilities. For people with developmental disabilities to provide consent for genetic testing, legal consent forms and explanation aids that consider individual characteristics are necessary. Moreover, education on disability awareness throughout society, including cost support, is needed. View Full-Text
Keywords: disability; genetic testing; informed consent; medical communication; clinical decision-making disability; genetic testing; informed consent; medical communication; clinical decision-making
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MDPI and ACS Style

Bang, G.; Lee, S.J.; Lee, B.; Park, M.; Park, S.-Y. Genetic Testing on Patients with Developmental Delay: A Preliminary Study from the Perspective of Physicians. Healthcare 2022, 10, 1236. https://doi.org/10.3390/healthcare10071236

AMA Style

Bang G, Lee SJ, Lee B, Park M, Park S-Y. Genetic Testing on Patients with Developmental Delay: A Preliminary Study from the Perspective of Physicians. Healthcare. 2022; 10(7):1236. https://doi.org/10.3390/healthcare10071236

Chicago/Turabian Style

Bang, Gwanwook, Sook Joung Lee, Bomyee Lee, Minji Park, and So-Youn Park. 2022. "Genetic Testing on Patients with Developmental Delay: A Preliminary Study from the Perspective of Physicians" Healthcare 10, no. 7: 1236. https://doi.org/10.3390/healthcare10071236

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