• Convergence Security Journal
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• v.24 no.2
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• pp.133-140
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• 2024

The spread of Direct-to-Consumer (DTC) genetic testing, where users request tests directly, has been increasing. With growing demand, certification systems have been implemented to grant testing qualifications to non-medical institutions, and the scope of tests has been expanded. However, unlike cases in less regulated foreign countries, disease-related tests are still excluded from the domestic regulations. The existing de-identification method does not adequately ensure the uniqueness and familial sharing of genomic information, limiting its practical utility. Therefore, this study proposes the application of fully homomorphic encryption in the analysis process to guarantee the usefulness of genomic information while minimizing the risk of leakage. Additionally, to safeguard the individual's right to self-determination, a privacy preservation model based on Opt-out is suggested. This aims to balance genomic information protection with maintainability of usability, ensuring the availability of information in line with the user's preferences.

• The Korean Society of Law and Medicine
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• v.23 no.2
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• pp.67-96
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• 2022

"Aid in Dying" means that when a decision-making patient suffers from an incurable disease, a drug that can speed up death is prescribed by a doctor and used to lead to death. Since the suspension of life-sustaining treatment was institutionalized based on human dignity and patient autonomy, the question of whether assisted death can be legally justified in relation to the right to receive medical help to shorten one's life to die with dignity has recently been actively discussed. In Korea, since the suspension of life-sustaining treatment was institutionalized by the enactment of the Life-sustaining Treatment Decision Act in 2016, an amendment to the Life-sustaining Treatment Act was recently proposed to legalize Aid in Dying. The global trend is that human "Right to Die" is discussed in the division of life and death, from the suspension of life-sustaining treatment to assisted death, and again in the order of euthanasia. In this paper, we started discussing dignified death and institutionalized patients' right to self-determination, looked at the controversy in the United States, which legislated assisted death in many states since the 2000s, and analyzed the main contents of California's End of Life Option Act and the data after enforcement. The strict requirements for Aid in Dying, such as voluntary confirmation of patients' intentions and doctors' obligation to provide information, and the results of California's Aid in dying system, composed of relatively diverse races, were reviewed.

• The Korean Society of Law and Medicine
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• v.21 no.3
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• pp.145-178
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• 2020

This paper examines discussions surrounding cognitive liberty, neuro-privacy, and mental integrity from the perspective of Neuro-rights. The right to control one's neurological data entails self-determination of collection and usage of one's data, and the right to object to any way such data may be employed to negatively impact oneself. As innovations in neurotechnologies bear benefits and downsides, a novel concept of the neuro-rights has been suggested to protect individual liberty and rights. In Oct. 2020, the Chilean Senate presented the 'Proyecto de ley sobre neuroderechos' to promote the recognition and protection of neuro-rights. This new bill defines all data obtained from the brain as neuronal data and outlaws the commerce of this data. Neurotechnology, especially when paired with big data and artificial intelligence, has the potential to turn one's neurological state into data. The possibility of inferring one's intent, preferences, personality, memory, emotions, and so on, poses harm to individual liberty and rights. However, the collection and use of neural data may outpace legislative innovation in the near future. Legal protection of neural data and the rights of its subject must be established in a comprehensive way, to adapt to the evolving data economy and technical environment.

• Journal of Convergence for Information Technology
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• v.8 no.5
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• pp.199-204
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• 2018

The concept of the Independent Living (IL) movement has been affected on recent disability public policy to enhance the right of consumers with disabilities, as well as to eliminate the barriers on employment. The IL movement emphasizes the empowerment and autonomy of consumer with disabilities to achieve their rights in educational, social, and employ environment. This paper presents three vocational rehabilitation(VR) services that affect consumers with disabilities based on the values of the Independent Living movement, and recommend some practical strategies. These VR services include the collaboration projects between the VR agencies and Independent Living Centers, the intervention programs to enhance the self determination or informed choice as a consumer, and the projects to strengthen the relationship between consumers with disabilities and their service providers.

• Journal of Korean Society of Archives and Records Management
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• v.17 no.1
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• pp.193-216
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• 2017

The purpose of this study is to understand issues related to the Personal Information Act recently emerging in the field of oral history, and to prepare countermeasures for oral history academics and archives. The Personal Information Act is intended to protect the confidentiality and freedom of the constitutional privacy, and to assure the right to self-determination of information, thereby realizing the dignity and value of the individual. Oral history is intended for living persons; therefore, strict ethical standards are needed to protect the morality of the person behind the sound recordings and appears as the subject of oral history. However, if the uniform application of the Personal Information Act is made, it is a requirement to make the process of consenting and notifying excessively complex and almost impossible to realize, making collection and service of oral history resource improbable. The mechanical and strict application of the Personal Information Act does not come into being because it has the aspect of undermining the inherent intrinsic value of oral history resources and making it difficult to maintain the authenticity of the records. To solve these problems, it is necessary to revise Article 58 (4) of the Personal Information Act of Korea. In addition, it is necessary to establish a guideline for the establishment of independent ethical standards of oral history itself, especially for the protection of the moral rights of third parties.

• Journal of Convergence for Information Technology
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• v.9 no.5
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• pp.228-235
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• 2019

The purpose of this study is to explore the experiences and challenges of public guardianship services project for the mental disabled as a system of supporting the decision-making and the rights advocacy. For this purpose, interviews with 11 social workers who act as public guardians were conducted and a model of practice was suggested through analysis using the grounded theory of Strauss and Corbin(1998). As a results, the possibility of rights advocacy through public guardian services for the mentally disabled, the positive change of attitude of the facilities and the establishment of direction for the restoration of rights for the mentally disabled were derived. Public guardians experienced excessive empowerment of their guardians or difficulties in the process of their duties, but were also able to defend the rights of the mental disabled and support self-determination right. Through this study, expansion of budgets and expansion of beneficiaries for public guardianship services, establishment of infrastructure for integration in the community, set-up a support organization for public guardian services and Raising awareness of the mental disabled and public guardian services were suggested.

• Information Systems Review
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• v.25 no.4
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• pp.291-314
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• 2023

The concept of Mydata emerged with the expansion of the data economy. MyData aims to empower individuals by enhancing their right to self-determination over their personal data. The use of MyData is expected to enable the provision of innovative service in various fields. Since 2022, MyData has been introduced and actively used in the financial sector. In the future, not only financial institutions but also Bigtech and Fintech companies are expected to actively join and demonstrate rapid expansion. To ensure steady growth for MyData in the financial sector, it is necessary to assess acceptance behaviors from multiple perspectives. However, the majority of existing research solely focuses on positive acceptance. This study analyzed the impact of users' personal characteristics and innovation characteristics on both innovation resistance and acceptance resistance. The analysis revealed that personal and innovation characteristics contribute to an increase in distrust and innovation resistance in the MyData service. In addition, it has been confirmed that it can lead to actions such as delayed acceptance and refusal to accept. The results of this study offer both theoretical and practical insights into user behavior within the MyData service market.

• The Korean Society of Law and Medicine
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• v.21 no.2
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• pp.163-207
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• 2020

Korea has been positioned as the leading country in the industry of clinical trials as the clinical trail of Korea has developed for the recent 10 years. Clinical trial has plays a significant role in the development of medicine and the increase of curability. However, it has inevitable risk as the purpose of the clinical trial is to prove the safety and effectiveness of new drugs. Therefore, the clinical trial should be controlled properly to protect the health of the subjects of clinical trial and to ensure that they exercise a right of self-determination. In this context, the fiduciary duties of doctors who conduct clinical trials is especially important. The Pharmaceutical Affairs Act and the relevant regulations define several duties of doctors who conduct clinical trials. In particular, the duty to protection of subjects and the duty to provide information constitute the main fiduciary duties to the subjects. Those are essentially similar to the fiduciary duties of doctors in usual treatment from the perspective of the values promoted by the law and the content of the law. Nonetheless, clinical trials put more emphasis on the duties to provide explanation than in usual treatment. Further research and study are required to establish the concrete standard for the duty of care. However, if the blind pursuit of higher standards for the duty of care or to pass the burden of proof to doctors may result in disrupting the development of clinical trials, limiting the accessibility of patients to new treatment and even violating the principle of sharing damage equally and properly. In addition to these duties, the laws of clinical trials define several duties of doctors. Any decision on whether the violation of the law constitutes the violation of the fiduciary duty and justifies the demand for compensation of damages should be based on whether relevant law aims to protect the safety and benefit of subjects, even if in an incidental way, the degree to which such violation breaches the values promoted by the law and the concrete of violation of benefit of law, the detailed acts of such violation. The legal interests of the subjects can be protected effectively by guaranteeing compliance with those duties and establishing judicial and administrative controls to ensure that the benefit of subjects are protected properly in individual cases.