Biobanks as fiduciaries of biosamples and data: a legal and ethical analysis in the light of international standards [0.03%]
基于国际标准的法律和伦理分析视角下的生物样本和数据信托机构——兼论生物银行的受托人责任
Tatsuaki Tsuruyama,Takuya Hiratsuka
Tatsuaki Tsuruyama
This article argues that biobanks are best conceptualized as fiduciaries of biospecimens and associated data. Building on fiduciary legal theory and Anglo-American fiduciary jurisprudence, it explains how long-term discretionary control, in...
Nathan Cortez
Nathan Cortez
Large language models (LLMs) such as Claude and ChatGPT are the most powerful artificial intelligence (AI) systems ever created, and they are being used to diagnose and treat patients. But LLMs have been shown to be unreliable, unpredictabl...
Regulating genetic discrimination in Chinese employment: insights from thalassemia-related cases [0.03%]
中国就业领域基因歧视的法律调控——以地中海贫血症为例
Lingqiao Song,Weitong Zhang,Yann Joly
Lingqiao Song
Genetic discrimination (GD) involves an individual or a group being negatively treated, unfairly profiled, or harmed, relative to the rest of the population, because of genetic characteristics. Research has examined GD mainly in insurance a...
Still invisible? Legal and ethical treatment of intersex individuals in China [0.03%]
依然隐形？中国对间性人(indeterminate sex)的法律及伦理待遇
Meng Wang,Yann Joly
Meng Wang
This article explores the legal, social, and ethical challenges faced by intersex individuals in China, a population estimated to number in the millions but still largely invisible in national laws and public discourse. Drawing on recent in...
Jorge L Contreras
Jorge L Contreras
The SNP Consortium ('TSC') was a nonprofit research collaboration formed in 1999 to identify, map, and publicly release human genomic markers known as 'single nucleotide polymorphisms' (SNPs). The project was funded by a group of pharmaceut...
Two-faced Janus? Consent to participate in research and consent to data processing in the EHDS era: a comparative analysis of requirements and standards in eight European countries [0.03%]
双面雅努斯？《欧洲健康数据法案》时代的研究参与同意和数据处理同意：八国要求与标准的比较分析
Luca Marelli,Ilaria Colussi,Irene Schlünder et al.
Luca Marelli et al.
This study examines the complex and often ambiguous conceptualization of consent in European health research, focusing on the relationship between informed consent to participate in research and consent as a legal basis for personal data pr...
Mind, machine, and the law: reimagining neurotechnology governance through disability rights [0.03%]
心灵、机器与法律——通过残疾人权利重新思考神经技术治理
Francisco Bariffi
Francisco Bariffi
The convergence of neurotechnologies and disability raises urgent questions about autonomy, mental integrity, and legal capacity for persons with disabilities. This article examines the human rights implications of emerging neurotechnologie...
Jin K Park,Susannah Baruch,I Glenn Cohen
Jin K Park
The Genetic Information Nondiscrimination Act (GINA) became law almost two decades ago, when genomic medicine was still in its infancy. One reason for its passage was to ensure that individuals and society would reap the benefits of emergin...
Taking actuarial fairness seriously: what is required for the ethical use of genetics in insurance? [0.03%]
认真对待精算公平性：在保险业中伦理地使用基因信息需要什么？
Harisan Nasir,Benjamin E Berkman,Leila Jamal et al.
Harisan Nasir et al.
Whether life insurers should be able to consider genetic information during underwriting is a long-standing debate often characterized by strong opinions on both sides. Insurers push for full access to applicants' genetic information, and c...
Patents, genetic resources, and traditional knowledge: the WIPO treaty and the global access and benefit-sharing regime complex [0.03%]
专利、遗传资源和传统知识：世界知识产权组织条约与全球获取及利益分享制度体系
Frédéric Perron-Welch
Frédéric Perron-Welch
The WIPO Treaty on Intellectual Property, Genetic Resources, and Associated Traditional Knowledge (GRATK Treaty) represents a significant doctrinal development in international intellectual property (IP) law. It introduces a mandatory discl...