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Publishing SNP Genotypes of Human Embryonic Stem Cell Lines: Policy Statement of the International Stem Cell Forum Ethics Working Party

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 embryo...

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Autores principales: Knoppers, Bartha M., Isasi, Rosario, Benvenisty, Nissim, Kim, Ock-Joo, Lomax, Geoffrey, Morris, Clive, Murray, Thomas H., Lee, Eng Hin, Perry, Margery, Richardson, Genevra, Sipp, Douglas, Tanner, Klaus, Wahlström, Jan, de Wert, Guido, Zeng, Fanyi
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Humana Press Inc 2011
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3137773/
https://www.ncbi.nlm.nih.gov/pubmed/21279481
http://dx.doi.org/10.1007/s12015-010-9226-2
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author Knoppers, Bartha M.
Isasi, Rosario
Benvenisty, Nissim
Kim, Ock-Joo
Lomax, Geoffrey
Morris, Clive
Murray, Thomas H.
Lee, Eng Hin
Perry, Margery
Richardson, Genevra
Sipp, Douglas
Tanner, Klaus
Wahlström, Jan
de Wert, Guido
Zeng, Fanyi
author_facet Knoppers, Bartha M.
Isasi, Rosario
Benvenisty, Nissim
Kim, Ock-Joo
Lomax, Geoffrey
Morris, Clive
Murray, Thomas H.
Lee, Eng Hin
Perry, Margery
Richardson, Genevra
Sipp, Douglas
Tanner, Klaus
Wahlström, Jan
de Wert, Guido
Zeng, Fanyi
author_sort Knoppers, Bartha M.
collection PubMed
description 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).
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spelling pubmed-31377732011-08-26 Publishing SNP Genotypes of Human Embryonic Stem Cell Lines: Policy Statement of the International Stem Cell Forum Ethics Working Party Knoppers, Bartha M. Isasi, Rosario Benvenisty, Nissim Kim, Ock-Joo Lomax, Geoffrey Morris, Clive Murray, Thomas H. Lee, Eng Hin Perry, Margery Richardson, Genevra Sipp, Douglas Tanner, Klaus Wahlström, Jan de Wert, Guido Zeng, Fanyi Stem Cell Rev Article 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). Humana Press Inc 2011-01-29 2011 /pmc/articles/PMC3137773/ /pubmed/21279481 http://dx.doi.org/10.1007/s12015-010-9226-2 Text en © The Author(s) 2011 https://creativecommons.org/licenses/by-nc/4.0/ This article is distributed under the terms of the Creative Commons Attribution Noncommercial License which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited.
spellingShingle Article
Knoppers, Bartha M.
Isasi, Rosario
Benvenisty, Nissim
Kim, Ock-Joo
Lomax, Geoffrey
Morris, Clive
Murray, Thomas H.
Lee, Eng Hin
Perry, Margery
Richardson, Genevra
Sipp, Douglas
Tanner, Klaus
Wahlström, Jan
de Wert, Guido
Zeng, Fanyi
Publishing SNP Genotypes of Human Embryonic Stem Cell Lines: Policy Statement of the International Stem Cell Forum Ethics Working Party
title Publishing SNP Genotypes of Human Embryonic Stem Cell Lines: Policy Statement of the International Stem Cell Forum Ethics Working Party
title_full Publishing SNP Genotypes of Human Embryonic Stem Cell Lines: Policy Statement of the International Stem Cell Forum Ethics Working Party
title_fullStr Publishing SNP Genotypes of Human Embryonic Stem Cell Lines: Policy Statement of the International Stem Cell Forum Ethics Working Party
title_full_unstemmed Publishing SNP Genotypes of Human Embryonic Stem Cell Lines: Policy Statement of the International Stem Cell Forum Ethics Working Party
title_short Publishing SNP Genotypes of Human Embryonic Stem Cell Lines: Policy Statement of the International Stem Cell Forum Ethics Working Party
title_sort publishing snp genotypes of human embryonic stem cell lines: policy statement of the international stem cell forum ethics working party
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3137773/
https://www.ncbi.nlm.nih.gov/pubmed/21279481
http://dx.doi.org/10.1007/s12015-010-9226-2
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