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 Wahlström; 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 Wahlström, Guido de Wert, Fanyi Zeng

^*Corresponding author for this work

Department of Genetics

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

12 Scopus citations

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
Number of pages	3
Journal	Stem Cell Reviews and Reports
Volume	7
Issue number	3
DOIs	https://doi.org/10.1007/s12015-010-9226-2
State	Published - Sep 2011

Bibliographical note

Funding Information:
Conflict of Interest This project was supported, in part, by the International Stem Cell Forum. Our funding sources have played no role in the design, interpretation, and writing of the present study.

Keywords

Data sharing
Databases
Embryonic stem cells
Ethics
Genotypic data
Policy
SNPs

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10.1007/s12015-010-9226-2

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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., Wahlström, 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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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).",

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note = "Funding Information: Conflict of Interest This project was supported, in part, by the International Stem Cell Forum. Our funding sources have played no role in the design, interpretation, and writing of the present study.",

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Knoppers, BM, Isasi, R, Benvenisty, N, Kim, OJ, Lomax, G, Morris, C, Murray, TH, Lee, EH, Perry, M, Richardson, G, Sipp, D, Tanner, K, Wahlström, 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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Publishing SNP Genotypes of Human Embryonic Stem Cell Lines: Policy Statement of the International Stem Cell Forum Ethics Working Party

Abstract

Bibliographical note

Keywords

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