title: Publishing SNP genotypes of human embryonic stem cell lines: policy statement of the International Stem Cell Forum Ethics Working Party.
abstract: 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).
authors.affiliation: 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.
authors.forename: Bartha M
authors.initials: BM
authors.lastname: Knoppers
authors.forename: Rosario
authors.initials: R
authors.lastname: Isasi
authors.forename: Nissim
authors.initials: N
authors.lastname: Benvenisty
authors.forename: Ock-Joo
authors.initials: OJ
authors.lastname: Kim
authors.forename: Geoffrey
authors.initials: G
authors.lastname: Lomax
authors.forename: Clive
authors.initials: C
authors.lastname: Morris
authors.forename: Thomas H
authors.initials: TH
authors.lastname: Murray
authors.forename: Eng Hin
authors.initials: EH
authors.lastname: Lee
authors.forename: Margery
authors.initials: M
authors.lastname: Perry
authors.forename: Genevra
authors.initials: G
authors.lastname: Richardson
authors.forename: Douglas
authors.initials: D
authors.lastname: Sipp
authors.forename: Klaus
authors.initials: K
authors.lastname: Tanner
authors.forename: Jan
authors.initials: J
authors.lastname: Wahlström
authors.forename: Guido
authors.initials: G
authors.lastname: de Wert
authors.forename: Fanyi
authors.initials: F
authors.lastname: Zeng
mesh_terms: D002460:Cell Line; D053595:Embryonic Stem Cells / Q000502:physiology*; D005838:Genotype; D006801:Humans; D007391:International Cooperation; D057766:Policy; D020641:Polymorphism, Single Nucleotide; D057905:Stem Cell Research / Q000941:ethics / Q000331:legislation & jurisprudence