International Stem Cell Forum Ethics Working Party. Centre of Genomics and Policy, Faculty of Medicine, Department of Human Genetics McGill University, 740 Dr. Penfield Avenue, Rm 5214, Montreal, QC, H3A 1A4, Canada.
Stem Cell Rev Rep. 2011 Sep;7(3):482-4. doi: 10.1007/s12015-010-9226-2.
Novel methods and associated tools permitting individual identification in publicly accessible SNP databases have become a debatable issue. There is growing concern that current technical and ethical safeguards to protect the identities of donors could be insufficient. In the context of human embryonic stem cell research, there are no studies focusing on the probability that an hESC line donor could be identified by analyzing published SNP profiles and associated genotypic and phenotypic information. We present the International Stem Cell Forum (ISCF) Ethics Working Party's Policy Statement on "Publishing SNP Genotypes of Human Embryonic Stem Cell Lines (hESC)". The Statement prospectively addresses issues surrounding the publication of genotypic data and associated annotations of hESC lines in open access databases. It proposes a balanced approach between the goals of open science and data sharing with the respect for fundamental bioethical principles (autonomy, privacy, beneficence, justice and research merit and integrity).
新型方法和相关工具使得在公开可获取的 SNP 数据库中进行个体识别成为一个有争议的问题。人们越来越担心，目前保护供体身份的技术和道德保障可能不够充分。在人类胚胎干细胞研究的背景下，尚无研究关注通过分析已发表的 SNP 图谱以及相关的基因型和表型信息，确定人类胚胎干细胞系供体的可能性。我们介绍国际干细胞论坛（ISCF）伦理工作组关于“发布人类胚胎干细胞系（hESC）的 SNP 基因型”的政策声明。该声明前瞻性地解决了在开放获取数据库中发布 hESC 系的基因型数据和相关注释所涉及的问题。它在开放科学和数据共享的目标与尊重基本生物伦理原则（自主性、隐私、善行、公正以及研究价值和诚信）之间提出了一种平衡的方法。
