Ethical considerations of research policy for personal genome analysis: the approach of the Genome Science Project in Japan [0.03%]
日本人类基因组计划个人基因组分析的研究伦理政策及其对策
Jusaku Minari,Tetsuya Shirai,Kazuto Kato
Jusaku Minari
As evidenced by high-throughput sequencers, genomic technologies have recently undergone radical advances. These technologies enable comprehensive sequencing of personal genomes considerably more efficiently and less expensively than hereto...
Mahsa Shabani,Pascal Borry
Mahsa Shabani
In order to study the relationship between genes and diseases, the increasing availability and sharing of phenotypic and genotypic data have been promoted as an imperative within the scientific community. In parallel with data sharing pract...
ELSA and RRI--Editorial [0.03%]
ELSA与RRI——编者按
Ellen-Marie Forsberg
Ellen-Marie Forsberg
This editorial presents the background for the article collection 'ELSA and RRI'. It sets the stage for the topics discussed in the collection and briefly presents the different contributions. It concludes by opening up for continued discus...
Open consent, biobanking and data protection law: can open consent be 'informed' under the forthcoming data protection regulation? [0.03%]
开放式知情同意、生物样本库和数据保护法律：在即将出台的数据保护条例下，开放式知情同意可以是“充分的”吗？
Dara Hallinan,Michael Friedewald
Dara Hallinan
This article focuses on whether a certain form of consent used by biobanks--open consent--is compatible with the Proposed Data Protection Regulation. In an open consent procedure, the biobank requests consent once from the data subject for ...
Direct to consumer testing in reproductive contexts--should health professionals be concerned? [0.03%]
生殖领域的直接面向消费者的检验——卫生专业人员应该担心吗？
Heather Skirton
Heather Skirton
Direct to consumer genetic testing offered via the Internet has been available for over a decade. Initially most tests of this type were offered without the input of the consumer's own health professional. Ethical and practical concerns hav...
Neglected ethical issues in biobank management: Results from a U.S. study [0.03%]
美国生物银行管理中的伦理问题：一项美国研究的结果
R Jean Cadigan,Dragana Lassiter,Kaaren Haldeman et al.
R Jean Cadigan et al.
The empirical literature on the ethical, legal, and social implications (ELSI) of biobanking has almost entirely relied on the perspectives of those outside of biobanks, such as the general public, researchers, and specimen contributors. Li...