Literature DB >> 24702994

Identifiability and privacy in pluripotent stem cell research.

Rosario Isasi1, Peter W Andrews2, Jay M Baltz3, Annelien L Bredenoord4, Paul Burton5, Ing-Ming Chiu6, Sara Chandros Hull7, Ji-Won Jung8, Andreas Kurtz9, Geoffrey Lomax10, Tenneille Ludwig11, Michael McDonald12, Clive Morris13, Huck Hui Ng14, Heather Rooke15, Alka Sharma16, Glyn N Stacey17, Clare Williams18, Fanyi Zeng19, Bartha Maria Knoppers20.   

Abstract

Data sharing is an essential element of research; however, recent scientific and social developments have challenged conventional methods for protecting privacy. Here we provide guidance for determining data sharing thresholds for human pluripotent stem cell research aimed at a wide range of stakeholders, including research consortia, biorepositories, policy-makers, and funders.
Copyright © 2014 Elsevier Inc. All rights reserved.

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Year:  2014        PMID： 24702994      PMCID： PMC4815907          DOI： 10.1016/j.stem.2014.03.014

Source DB:  PubMed          Journal:  Cell Stem Cell        ISSN： 1875-9777            Impact factor:   24.633


  10 in total

Review 1.  The tension between data sharing and the protection of privacy in genomics research.

Authors:  Jane Kaye
Journal:  Annu Rev Genomics Hum Genet       Date:  2012-03-09       Impact factor: 8.929

2.  Consent to 'personal' genomics and privacy. Direct-to-consumer genetic tests and population genome research challenge traditional notions of privacy and consent.

Authors:  Bartha Maria Knoppers
Journal:  EMBO Rep       Date:  2010-05-07       Impact factor: 8.807

3.  Identifying personal genomes by surname inference.

Authors:  Melissa Gymrek; Amy L McGuire; David Golan; Eran Halperin; Yaniv Erlich
Journal:  Science       Date:  2013-01-18       Impact factor: 47.728

4.  Research ethics. The complexities of genomic identifiability.

Authors:  Laura L Rodriguez; Lisa D Brooks; Judith H Greenberg; Eric D Green
Journal:  Science       Date:  2013-01-18       Impact factor: 47.728

5.  Whole-genome analysis, stem cell research, and the future of biobanks.

Authors:  Thane Kreiner; Stefan Irion
Journal:  Cell Stem Cell       Date:  2013-05-02       Impact factor: 24.633

6.  Patients' attitudes toward the donation of biological materials for the derivation of induced pluripotent stem cells.

Authors:  Ishan Dasgupta; Juli Bollinger; Debra J H Mathews; Neil M Neumann; Abbas Rattani; Jeremy Sugarman
Journal:  Cell Stem Cell       Date:  2014-01-02       Impact factor: 24.633

7.  Disclosure and management of research findings in stem cell research and banking: policy statement.

Authors:  Rosario Isasi; Bartha M Knoppers; Peter W Andrews; Annelien Bredenoord; Alan Colman; Lee Eng Hin; Sara Hull; Ock-Joo Kim; Geoffrey Lomax; Clive Morris; Douglas Sipp; Glyn Stacey; Jan Wahlstrom; Fanyi Zeng
Journal:  Regen Med       Date:  2012-05       Impact factor: 3.806

8.  Banking human induced pluripotent stem cells: lessons learned from embryonic stem cells?

Authors:  Glyn N Stacey; Jeremy M Crook; Derek Hei; Tenneille Ludwig
Journal:  Cell Stem Cell       Date:  2013-10-03       Impact factor: 24.633

9.  Publishing SNP genotypes of human embryonic stem cell lines: policy statement of the International Stem Cell Forum Ethics Working Party.

Authors:  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
Journal:  Stem Cell Rev Rep       Date:  2011-09       Impact factor: 5.739

10.  What is the point of large-scale collections of human induced pluripotent stem cells?

Authors:  Ruth McKernan; Fiona M Watt
Journal:  Nat Biotechnol       Date:  2013-10       Impact factor: 54.908
  10 in total
  14 in total

Review 1.  The DISCUSS Project: Revised Points to Consider for the Derivation of Induced Pluripotent Stem Cell Lines From Previously Collected Research Specimens.

Authors:  Geoffrey P Lomax; Sara Chandros Hull; Rosario Isasi
Journal:  Stem Cells Transl Med       Date:  2015-01-05       Impact factor: 6.940

Review 2.  Ethical Issues for Clinical Studies That use Human Embryonic Stem Cells: The 2014 Revisions to the Japanese Guidelines.

Authors:  Hiroshi Mizuno
Journal:  Stem Cell Rev Rep       Date:  2015-10       Impact factor: 5.739

Review 3.  Genetic research on biospecimens poses minimal risk.

Authors:  David S Wendler; Annette Rid
Journal:  Trends Genet       Date:  2014-12-16       Impact factor: 11.639

4.  Regulatory insight into the European human pluripotent stem cell registry.

Authors:  Andreas Kurtz; Glyn Stacey; Luam Kidane; Anna Seriola; Harald Stachelscheid; Anna Veiga
Journal:  Stem Cells Dev       Date:  2014-12       Impact factor: 3.272

Review 5.  A Standard Nomenclature for Referencing and Authentication of Pluripotent Stem Cells.

Authors:  Andreas Kurtz; Stefanie Seltmann; Amos Bairoch; Marie-Sophie Bittner; Kevin Bruce; Amanda Capes-Davis; Laura Clarke; Jeremy M Crook; Laurence Daheron; Johannes Dewender; Adam Faulconbridge; Wataru Fujibuchi; Alexander Gutteridge; Derek J Hei; Yong-Ou Kim; Jung-Hyun Kim; Anja Kolb- Kokocinski; Fritz Lekschas; Geoffrey P Lomax; Jeanne F Loring; Tenneille Ludwig; Nancy Mah; Tohru Matsui; Robert Müller; Helen Parkinson; Michael Sheldon; Kelly Smith; Harald Stachelscheid; Glyn Stacey; Ian Streeter; Anna Veiga; Ren-He Xu
Journal:  Stem Cell Reports       Date:  2018-01-09       Impact factor: 7.765

6.  Report of the International Stem Cell Banking Initiative Workshop Activity: Current Hurdles and Progress in Seed-Stock Banking of Human Pluripotent Stem Cells.

Authors:  Jung-Hyun Kim; Andreas Kurtz; Bao-Zhu Yuan; Fanyi Zeng; Geoff Lomax; Jeanne F Loring; Jeremy Crook; Ji Hyeon Ju; Laura Clarke; Maneesha S Inamdar; Martin Pera; Meri T Firpo; Michael Sheldon; Nafees Rahman; Orla O'Shea; Patricia Pranke; Qi Zhou; Rosario Isasi; Ruttachuk Rungsiwiwut; Shin Kawamata; Steve Oh; Tenneille Ludwig; Tohru Masui; Thomas J Novak; Tsuneo Takahashi; Wataru Fujibuchi; Soo Kyung Koo; Glyn N Stacey
Journal:  Stem Cells Transl Med       Date:  2017-10-24       Impact factor: 6.940

7.  hPSCreg--the human pluripotent stem cell registry.

Authors:  Stefanie Seltmann; Fritz Lekschas; Robert Müller; Harald Stachelscheid; Marie-Sophie Bittner; Weiping Zhang; Luam Kidane; Anna Seriola; Anna Veiga; Glyn Stacey; Andreas Kurtz
Journal:  Nucleic Acids Res       Date:  2015-09-22       Impact factor: 16.971

8.  The European General Data Protection Regulation: challenges and considerations for iPSC researchers and biobanks.

Authors:  Michael Morrison; Jessica Bell; Carol George; Shawn Harmon; Megan Munsie; Jane Kaye
Journal:  Regen Med       Date:  2017-10-04       Impact factor: 3.806

Review 9.  Donor information in research and drug evaluation with induced pluripotent stem cells (iPSCs).

Authors:  Marcin Orzechowski; Maximilian Schochow; Michael Kühl; Florian Steger
Journal:  Stem Cell Res Ther       Date:  2020-03-19       Impact factor: 6.832

Review 10.  ISSCR Guidelines for Stem Cell Research and Clinical Translation: The 2021 update.

Authors:  Robin Lovell-Badge; Eric Anthony; Roger A Barker; Tania Bubela; Ali H Brivanlou; Melissa Carpenter; R Alta Charo; Amander Clark; Ellen Clayton; Yali Cong; George Q Daley; Jianping Fu; Misao Fujita; Andy Greenfield; Steve A Goldman; Lori Hill; Insoo Hyun; Rosario Isasi; Jeffrey Kahn; Kazuto Kato; Jin-Soo Kim; Jonathan Kimmelman; Jürgen A Knoblich; Debra Mathews; Nuria Montserrat; Jack Mosher; Megan Munsie; Hiromitsu Nakauchi; Luigi Naldini; Gail Naughton; Kathy Niakan; Ubaka Ogbogu; Roger Pedersen; Nicolas Rivron; Heather Rooke; Janet Rossant; Jeff Round; Mitinori Saitou; Douglas Sipp; Julie Steffann; Jeremy Sugarman; Azim Surani; Jun Takahashi; Fuchou Tang; Leigh Turner; Patricia J Zettler; Xiaomei Zhai
Journal:  Stem Cell Reports       Date:  2021-05-27       Impact factor: 7.765
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