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KMID : 1011120230160020051
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Bioethics Policy Studies
2023 Volume.16 No. 2 p.51 ~ p.72
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Necessity and Considerations of Recognition of Exemption from Proxy Consent in Research on ‘Children Subject to Protection’
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Choi Hyeon-Yi
Yoo Su-Jung
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Abstract
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The number of new children subject to protection in 2021 announced by the Ministry of Health and Welfare was 3, 437, a decrease of 683 compared to 4, 120 in 2020. However, this decline seems to be decreasing as the total child population itself continues to decline due to the current low birth rate in Korea, and the number of children subject to protection every year remains about 0.05% of all children. According to the 「Child Welfare Act」, children subject to protection are protected in the jurisdiction, but depending on the situation, there is room for a vacancy in the legal representative. For example, there may be no other relatives who can raise and protect children at a time when a person with parental authority dies, or because all or part of parental authority cannot be exercised according to the judgment of restriction and loss of parental authority. In addition, if the parent is out of contact with the child, fails to fulfill the responsibility of the caregiver due to economic difficulties, or if the child runs away from home because of a family conflict, including child abuse, the legal representative is vacant. As such, it is necessary to conduct a fact-finding survey on children subject to protection through human subject research such as surveys and in-depth interviews to find out what kind of difficulties they are actually facing and what policies or institutional support are needed as a practical solution. However, in accordance with the 「Bioethics and Safety Act」, children must obtain written consent from legal representatives to participate in human subject research. In other words, there is a problem in that even if the child who is the subject of the study has informed assent by sufficient information, he cannot participate in the study without the written consent of the legal representative. Accordingly, this paper examined the current status of children subject to protection in Korea and the need for exemption from proxy consent in research on children subject to protection, and reviewed the main contents of international ethical guidelines for children’s research. Based on this, we would like to propose several considerations for the exemption of proxy consent to be recognized so that children, including children subject to protection, can voluntarily participate in research that can contribute to the interests of individuals or their groups.
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KEYWORD
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children subject to protection, human subject research, legal representatives, independent advocate, Institutional Review Board, Bioethics and Safety Act
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