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KMID : 1142820220060010069
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Bio, Ethics and Policy
2022 Volume.6 No. 1 p.69 ~ p.91
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Decision-Making Support Measures to Ensure Participation in Research by Persons with Developmental Disabilities
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Yoo Su-Jung
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Abstract
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As of 2020, the number of registered disabled people in Korea is 5.1% of the total population. The total number of disabled people in Korea is declining, but the proportion of the developmentally disabled (including those with intellectual disabilities and autism) has increased. People with developmental disabilities experience difficulties, such as those involving medical care, education, employment, culture, social welfare, and economic activities throughout, their lives. To identify the difficulties or needs of people with developmental disabilities and to solve their problems, social and behavioral research on various topics should be actively conducted. People with developmental disabilities should actively participate in the research on these topics. However, academic research on the problems and special needs faced by people with developmental disabilities so far is extremely scant. In addition, one of the barriers that prevent people with developmental disabilities from participating in the research itself is doubt about their ability to give informed consent. To resolve the continuous imbalance experienced by people with developmental disabilities and to promote human rights, scholars have argued that people with developmental disabilities should actively participate in research to identify the cause of the fundamental problem and identify avenues to improve it. Therefore, in this paper, I will evaluate researchers’ understanding of and ability to determine the ability to consent based on sufficient information when planning research for the developmentally disabled. Developing an explanatory text for research participation is necessary when considering a researcher’s comprehension ability. In addition, the Institutional Review Board has suggested that ethical considerations that can be used when reviewing such a research plan should be prepared.
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KEYWORD
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developmental disabilities, human subject research, Institutional Review Boards, supported decision-making, vulnerability
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FullTexts / Linksout information
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Listed journal information
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