• Title/Summary/Keyword: protection of personal information

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Research to Establish a Common Standard for Assent by Assessing the Current State of the Assent Process and Conducting Interviews with Pediatrician/Pediatric Neurologist (소아승낙 현황조사와 소아청소년과/소아신경과 전문의를 대상으로 면담조사를 통한 소아승낙서 공통기준 수립 연구)

  • Yoon Jin Lee;Sun Ju Lee;Su Jin Kang;Dae Ho Lee;Kyun-Seop Bae;Jong Woo Chung;Byung Soo Kim;Jin Seok Kim;Myung Ah Lee
    • The Journal of KAIRB
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    • v.6 no.1
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    • pp.5-16
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    • 2024
  • Purpose: The purpose of this study is to investigate the current status of pediatric assent in nationwide hospitals and to assess the children's comprehension for pediatric assent by interviewing pediatricians/pediatric neurologists to determine whether children of the age (elementary and middle school students) can understand the purpose, risks, benefits, and concepts of voluntary participation in clinical research described in the assent form, and to help improve the administrative efficiency of multicenter clinical trials. Methods: The status of pediatric assent was surveyed online using Google Forms at 141 university hospitals with administrative staff who are members of the Institutional Review Board (IRB) administrative staff subcommittee with in Korean Association of Institutional Review Boards (KAIRB). Additionally, face-to-face interviews were conducted with 7 pediatricians/pediatric neurologists. Survey and interview responses were summarized using descriptive statistics. Results: Out of the 141 institutions surveyed, 35 institutions (24.8%) responded. Among them, 30 institutions (85.7%) reported having age criteria for acquiring pediatric assent forms in the case of children. The age range for pediatric assent acquisition have been from 7 years old to 12 years old (15 institutions, 50%), and from 7 years old to 15 years old (7 institutions, 23.3%). Nine institutions (25.7%) have had criteria for obtaining both parents' consent in cases involving the participation of children. Nineteen institutions (54.3%) have had checklists or guidelines available for use by IRB members in study protocols involving vulnerable research subjects. Three pediatricians/pediatric neurologists have believed that upper-grade elementary school students (5th-6th grade) could comprehensively understand informed consent forms. Two have believed that middle school students would be able to understand them if they included personal information. Two pediatricians/pediatric neurologists have believed that even lower-grade elementary school students (1st-4th grade) could understand the explanations if they were made simpler. Conclusion: It is suggested that not only elementary school students (7-12 years old) but also middle school students (13-15 years old) should receive pediatric assent forms, as it would facilitate a comprehensive understanding of the forms. To enhance the comprehension of assent form content, it is necessary to use age-appropriate words, language, and expressions in the forms hospital. It is also recommended to create comics or videos to make the content of the assent forms more accessible for children.

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A case study of blockchain-based public performance video platform establishment: Focusing on Gyeonggi Art On, a new media art broadcasting station in Gyeonggi-do (블록체인 기반 공연영상 공공 플랫폼 구축 사례 연구: 경기도 뉴미디어 예술방송국 경기아트온을 중심으로)

  • Lee, Seung Hyun
    • Journal of Service Research and Studies
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    • v.13 no.1
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    • pp.108-126
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    • 2023
  • This study explored the sustainability of a blockchain-based cultural art performance video platform through the construction of Gyeonggi Art On, a new media art broadcasting station in Gyeonggi-do. In addition, the technical limitations of video content transaction using block chain, legal and institutional issues, and the protection of personal information and intellectual property rights were reviewed. As for the research method, participatory observation methods such as in-depth interviews with developers and operators and participation in meetings were conducted. The researcher participated in and observed the entire development process, including designing and developing blockchain nodes, smart contracts, APIs, UI/UX, and testing interworking between blockchain and content distribution services. Research Question 1: The results of the study on 'Which technology model is suitable for a blockchain-based performance video content distribution public platform?' are as follows. 1) The blockchain type suitable for the public platform for distribution of art performance video contents based on the blockchain is the private type that can be intervened only when the blockchain manager directly invites it. 2) In public platforms such as Gyeonggi ArtOn, among the copyright management model, which is an art based on NFT issuance, and the BC token and cloud-based content distribution model, the model that provides content to external demand organizations through API and uses K-token for fee settlement is suitable. 3) For public platform initial services such as Gyeonggi ArtOn, a closed blockchain that provides services only to users who have been granted the right to use content is suitable. Research question 2: What legal and institutional problems should be reviewed when operating a blockchain-based performance video distribution public platform? The results of the study are as follows. 1) Blockchain-based smart contracts have a party eligibility problem due to the nature of blockchain technology in which the identities of transaction parties may not be revealed. 2) When a security incident occurs in the block chain, it is difficult to recover the loss because it is unclear how to compensate or remedy the user's loss. 3) The concept of default cannot be applied to smart contracts, and even if the obligations under the smart contract have already been fulfilled, the possibility of incomplete performance must be reviewed.