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- 저자 : Carole J. Petersen (검색결과 2 건)
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Big Data, Health Care, and International Human Rights Norms
Carole J. Petersen 이화여자대학교 생명의료법연구소 2017 Asia Pacific Journal of Health Law & Ethics Vol.11 No.1
In the era of “big data,” researchers manage high-volume, high-variety, and high velocity data sets, which are increasingly available to the general public. This paper explores the human rights implications of data-driven health care, focusing on the rights of persons who either live with disabilities or may be perceived as having an elevated risk of developing a disability in the future. Access to high-quality data at reasonable cost can help governments to fulfill the right to health, which is well established in international human rights law. The data revolution has also empowered individuals to take greater control over their own health and to monitor their governments’ compliance with human rights treaties, including the Convention on the Rights of Persons with Disabilities (CRPD). Yet big data can also inadvertently promote discrimination and violations of privacy. In theory, governments should ensure confidentiality and respect for the privacy of individuals’ health data. In practice, it is difficult to prevent data miners from using re-identification techniques to link anonymized health information with non-medical open data. It is therefore important to enact antidiscrimination legislation that prohibits not only discrimination on the ground of existing, past, and imputed disabilities but also discrimination on the ground of a disability that may develop in the future. Governments may also need to take a proactive approach and require employers, insurance companies and other private actors to disclose whether they are using re-identification processes or purchasing health-related data from data brokers.
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Carole J. Petersen 이화여자대학교 생명의료법연구소 2016 Asia Pacific Journal of Health Law & Ethics Vol.10 No.1
Population aging has captured the attention of the international human rights movement and raised new questions regarding the legal framework for promoting and protecting human rights. Laws that promote “guardianship” of older citizens and other systems of substituted decision-making are particularly controversial. While many governments insist that these laws are necessary to protect older citizens, the disability rights movement and the UN Committee on the Rights of Persons with Disabilities has offered a strong critique of adult guardianship, viewing it as an inherent violation of an individual’s right to legal capacity. Interestingly, this debate regarding substituted decision-making has arisen while the international community is considering whether to draft a new multilateral human rights treaty dedicated to the rights of older citizens. If the UN ultimately decides to undertake this project, then the drafters of the new treaty will need to confront, directly, the ethics of adult guardianship and consider whether it can be retained (albeit with increased safeguards to prevent abuse) or must be rejected as an inherent violation of human rights.
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