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

Bartha M. Knoppers; Rosario Isasi; Nissim Benvenisty; Ock-Joo Kim; Geoffrey Lomax; Clive Morris; Thomas H. Murray; Eng Hin Lee; Margery Perry; Genevra Richardson; Douglas Sipp; Klaus Tanner; Jan Wahlstrom; Guido de Wert; Fanyi Zeng

doi:10.1007/s12015-010-9226-2

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

Bartha M. Knoppers, Rosario Isasi^*, Nissim Benvenisty, Ock-Joo Kim, Geoffrey Lomax, Clive Morris, Thomas H. Murray, Eng Hin Lee, Margery Perry, Genevra Richardson, Douglas Sipp, Klaus Tanner, Jan Wahlstrom, Guido de Wert, Fanyi Zeng

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

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).

Original language	English
Pages (from-to)	482-484
Journal	Stem Cell Reviews and Reports
Volume	7
Issue number	3
DOIs	https://doi.org/10.1007/s12015-010-9226-2
Publication status	Published - Sept 2011

Keywords

Embryonic stem cells
Data sharing
Ethics
Policy
Databases
SNPs
Genotypic data

Access to Document

10.1007/s12015-010-9226-2Licence: CC BY-NC

Cite this

Knoppers, B. M., Isasi, R., Benvenisty, N., Kim, O.-J., Lomax, G., Morris, C., Murray, T. H., Lee, E. H., Perry, M., Richardson, G., Sipp, D., Tanner, K., Wahlstrom, J., de Wert, G., & Zeng, F. (2011). Publishing SNP Genotypes of Human Embryonic Stem Cell Lines: Policy Statement of the International Stem Cell Forum Ethics Working Party. Stem Cell Reviews and Reports, 7(3), 482-484. https://doi.org/10.1007/s12015-010-9226-2

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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).",

keywords = "Embryonic stem cells, Data sharing, Ethics, Policy, Databases, SNPs, Genotypic data",

author = "Knoppers, {Bartha M.} and Rosario Isasi and Nissim Benvenisty and Ock-Joo Kim and Geoffrey Lomax and Clive Morris and Murray, {Thomas H.} and Lee, {Eng Hin} and Margery Perry and Genevra Richardson and Douglas Sipp and Klaus Tanner and Jan Wahlstrom and {de Wert}, Guido and Fanyi Zeng",

year = "2011",

month = sep,

doi = "10.1007/s12015-010-9226-2",

language = "English",

volume = "7",

pages = "482--484",

journal = "Stem Cell Reviews and Reports",

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Knoppers, BM, Isasi, R, Benvenisty, N, Kim, O-J, Lomax, G, Morris, C, Murray, TH, Lee, EH, Perry, M, Richardson, G, Sipp, D, Tanner, K, Wahlstrom, J, de Wert, G & Zeng, F 2011, 'Publishing SNP Genotypes of Human Embryonic Stem Cell Lines: Policy Statement of the International Stem Cell Forum Ethics Working Party', Stem Cell Reviews and Reports, vol. 7, no. 3, pp. 482-484. https://doi.org/10.1007/s12015-010-9226-2

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AU - Knoppers, Bartha M.

AU - Isasi, Rosario

AU - Benvenisty, Nissim

AU - Kim, Ock-Joo

AU - Lomax, Geoffrey

AU - Morris, Clive

AU - Murray, Thomas H.

AU - Lee, Eng Hin

AU - Perry, Margery

AU - Richardson, Genevra

AU - Sipp, Douglas

AU - Tanner, Klaus

AU - Wahlstrom, Jan

AU - de Wert, Guido

AU - Zeng, Fanyi

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AB - 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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