Literature DB >> 33414545

Toward better governance of human genomic data.

Kieran C O'Doherty1, Mahsa Shabani2, Edward S Dove3, Heidi Beate Bentzen4, Pascal Borry5, Michael M Burgess6, Don Chalmers7, Jantina De Vries8, Lisa Eckstein7, Stephanie M Fullerton9, Eric Juengst10, Kazuto Kato11, Jane Kaye12, Bartha Maria Knoppers13, Barbara A Koenig14, Spero M Manson15, Kimberlyn M McGrail6, Amy L McGuire16, Eric M Meslin17, Dianne Nicol7, Barbara Prainsack18,19, Sharon F Terry20, Adrian Thorogood13, Wylie Burke9.   

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Year:  2021        PMID: 33414545      PMCID: PMC8450011          DOI: 10.1038/s41588-020-00742-6

Source DB:  PubMed          Journal:  Nat Genet        ISSN: 1061-4036            Impact factor:   41.307


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  23 in total

Review 1.  Privacy challenges and research opportunities for genomic data sharing.

Authors:  Luca Bonomi; Yingxiang Huang; Lucila Ohno-Machado
Journal:  Nat Genet       Date:  2020-06-29       Impact factor: 38.330

2.  Sharing with Strangers: Governance Models for Borderless Genomic Research in a Territorial World.

Authors:  Eric T Juengst; Eric M Meslin
Journal:  Kennedy Inst Ethics J       Date:  2019

Review 3.  Clinical use of current polygenic risk scores may exacerbate health disparities.

Authors:  Alicia R Martin; Masahiro Kanai; Yoichiro Kamatani; Yukinori Okada; Benjamin M Neale; Mark J Daly
Journal:  Nat Genet       Date:  2019-03-29       Impact factor: 38.330

4.  To share or not to share: Incentivizing data sharing in life science communities.

Authors:  Louise Bezuidenhout
Journal:  Dev World Bioeth       Date:  2018-01-22       Impact factor: 2.294

5.  Underutilization of specimens in biobanks: an ethical as well as a practical concern?

Authors:  R Jean Cadigan; Eric Juengst; Arlene Davis; Gail Henderson
Journal:  Genet Med       Date:  2014-04-24       Impact factor: 8.822

6.  Dynamic Consent: a potential solution to some of the challenges of modern biomedical research.

Authors:  Isabelle Budin-Ljøsne; Harriet J A Teare; Jane Kaye; Stephan Beck; Heidi Beate Bentzen; Luciana Caenazzo; Clive Collett; Flavio D'Abramo; Heike Felzmann; Teresa Finlay; Muhammad Kassim Javaid; Erica Jones; Višnja Katić; Amy Simpson; Deborah Mascalzoni
Journal:  BMC Med Ethics       Date:  2017-01-25       Impact factor: 2.652

7.  A qualitative study of participants' views on re-consent in a longitudinal biobank.

Authors:  Mary Dixon-Woods; David Kocman; Liz Brewster; Janet Willars; Graeme Laurie; Carolyn Tarrant
Journal:  BMC Med Ethics       Date:  2017-03-23       Impact factor: 2.652

8.  Registered access: authorizing data access.

Authors:  Stephanie O M Dyke; Mikael Linden; Ilkka Lappalainen; Jordi Rambla De Argila; Knox Carey; David Lloyd; J Dylan Spalding; Moran N Cabili; Giselle Kerry; Julia Foreman; Tim Cutts; Mahsa Shabani; Laura L Rodriguez; Maximilian Haeussler; Brian Walsh; Xiaoqian Jiang; Shuang Wang; Daniel Perrett; Tiffany Boughtwood; Andreas Matern; Anthony J Brookes; Miro Cupak; Marc Fiume; Ravi Pandya; Ilia Tulchinsky; Serena Scollen; Juha Törnroos; Samir Das; Alan C Evans; Bradley A Malin; Stephan Beck; Steven E Brenner; Tommi Nyrönen; Niklas Blomberg; Helen V Firth; Matthew Hurles; Anthony A Philippakis; Gunnar Rätsch; Michael Brudno; Kym M Boycott; Heidi L Rehm; Michael Baudis; Stephen T Sherry; Kazuto Kato; Bartha M Knoppers; Dixie Baker; Paul Flicek
Journal:  Eur J Hum Genet       Date:  2018-08-02       Impact factor: 4.246

9.  A scientometric review of genome-wide association studies.

Authors:  Melinda C Mills; Charles Rahal
Journal:  Commun Biol       Date:  2019-01-07

10.  Framework for responsible sharing of genomic and health-related data.

Authors:  Bartha Maria Knoppers
Journal:  Hugo J       Date:  2014-10-17
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  9 in total

1.  Is there a way to reduce the inequity in variant interpretation on the basis of ancestry?

Authors:  Paul S Appelbaum; Wylie Burke; Erik Parens; David A Zeevi; Laura Arbour; Nanibaa' A Garrison; Vence L Bonham; Wendy K Chung
Journal:  Am J Hum Genet       Date:  2022-06-02       Impact factor: 11.043

Review 2.  Genomics in Egypt: Current Status and Future Aspects.

Authors:  Eman Ahmed El-Attar; Rasha Mohamed Helmy Elkaffas; Sarah Ahmed Aglan; Iman S Naga; Amira Nabil; Hoda Y Abdallah
Journal:  Front Genet       Date:  2022-05-13       Impact factor: 4.772

3.  Lessons learned and recommendations for data coordination in collaborative research: The CSER consortium experience.

Authors:  Kathleen D Muenzen; Laura M Amendola; Tia L Kauffman; Kathleen F Mittendorf; Jeannette T Bensen; Flavia Chen; Richard Green; Bradford C Powell; Mark Kvale; Frank Angelo; Laura Farnan; Stephanie M Fullerton; Jill O Robinson; Tianran Li; Priyanka Murali; James M J Lawlor; Jeffrey Ou; Lucia A Hindorff; Gail P Jarvik; David R Crosslin
Journal:  HGG Adv       Date:  2022-05-20

4.  GA4GH: International policies and standards for data sharing across genomic research and healthcare.

Authors:  Heidi L Rehm; Angela J H Page; Lindsay Smith; Jeremy B Adams; Gil Alterovitz; Lawrence J Babb; Maxmillian P Barkley; Michael Baudis; Michael J S Beauvais; Tim Beck; Jacques S Beckmann; Sergi Beltran; David Bernick; Alexander Bernier; James K Bonfield; Tiffany F Boughtwood; Guillaume Bourque; Sarion R Bowers; Anthony J Brookes; Michael Brudno; Matthew H Brush; David Bujold; Tony Burdett; Orion J Buske; Moran N Cabili; Daniel L Cameron; Robert J Carroll; Esmeralda Casas-Silva; Debyani Chakravarty; Bimal P Chaudhari; Shu Hui Chen; J Michael Cherry; Justina Chung; Melissa Cline; Hayley L Clissold; Robert M Cook-Deegan; Mélanie Courtot; Fiona Cunningham; Miro Cupak; Robert M Davies; Danielle Denisko; Megan J Doerr; Lena I Dolman; Edward S Dove; L Jonathan Dursi; Stephanie O M Dyke; James A Eddy; Karen Eilbeck; Kyle P Ellrott; Susan Fairley; Khalid A Fakhro; Helen V Firth; Michael S Fitzsimons; Marc Fiume; Paul Flicek; Ian M Fore; Mallory A Freeberg; Robert R Freimuth; Lauren A Fromont; Jonathan Fuerth; Clara L Gaff; Weiniu Gan; Elena M Ghanaim; David Glazer; Robert C Green; Malachi Griffith; Obi L Griffith; Robert L Grossman; Tudor Groza; Jaime M Guidry Auvil; Roderic Guigó; Dipayan Gupta; Melissa A Haendel; Ada Hamosh; David P Hansen; Reece K Hart; Dean Mitchell Hartley; David Haussler; Rachele M Hendricks-Sturrup; Calvin W L Ho; Ashley E Hobb; Michael M Hoffman; Oliver M Hofmann; Petr Holub; Jacob Shujui Hsu; Jean-Pierre Hubaux; Sarah E Hunt; Ammar Husami; Julius O Jacobsen; Saumya S Jamuar; Elizabeth L Janes; Francis Jeanson; Aina Jené; Amber L Johns; Yann Joly; Steven J M Jones; Alexander Kanitz; Kazuto Kato; Thomas M Keane; Kristina Kekesi-Lafrance; Jerome Kelleher; Giselle Kerry; Seik-Soon Khor; Bartha M Knoppers; Melissa A Konopko; Kenjiro Kosaki; Martin Kuba; Jonathan Lawson; Rasko Leinonen; Stephanie Li; Michael F Lin; Mikael Linden; Xianglin Liu; Isuru Udara Liyanage; Javier Lopez; Anneke M Lucassen; Michael Lukowski; Alice L Mann; John Marshall; Michele Mattioni; Alejandro Metke-Jimenez; Anna Middleton; Richard J Milne; Fruzsina Molnár-Gábor; Nicola Mulder; Monica C Munoz-Torres; Rishi Nag; Hidewaki Nakagawa; Jamal Nasir; Arcadi Navarro; Tristan H Nelson; Ania Niewielska; Amy Nisselle; Jeffrey Niu; Tommi H Nyrönen; Brian D O'Connor; Sabine Oesterle; Soichi Ogishima; Vivian Ota Wang; Laura A D Paglione; Emilio Palumbo; Helen E Parkinson; Anthony A Philippakis; Angel D Pizarro; Andreas Prlic; Jordi Rambla; Augusto Rendon; Renee A Rider; Peter N Robinson; Kurt W Rodarmer; Laura Lyman Rodriguez; Alan F Rubin; Manuel Rueda; Gregory A Rushton; Rosalyn S Ryan; Gary I Saunders; Helen Schuilenburg; Torsten Schwede; Serena Scollen; Alexander Senf; Nathan C Sheffield; Neerjah Skantharajah; Albert V Smith; Heidi J Sofia; Dylan Spalding; Amanda B Spurdle; Zornitza Stark; Lincoln D Stein; Makoto Suematsu; Patrick Tan; Jonathan A Tedds; Alastair A Thomson; Adrian Thorogood; Timothy L Tickle; Katsushi Tokunaga; Juha Törnroos; David Torrents; Sean Upchurch; Alfonso Valencia; Roman Valls Guimera; Jessica Vamathevan; Susheel Varma; Danya F Vears; Coby Viner; Craig Voisin; Alex H Wagner; Susan E Wallace; Brian P Walsh; Marc S Williams; Eva C Winkler; Barbara J Wold; Grant M Wood; J Patrick Woolley; Chisato Yamasaki; Andrew D Yates; Christina K Yung; Lyndon J Zass; Ksenia Zaytseva; Junjun Zhang; Peter Goodhand; Kathryn North; Ewan Birney
Journal:  Cell Genom       Date:  2021-11-10

5.  Genomic health data generation in the UK: a 360 view.

Authors:  Elizabeth Ormondroyd; Peter Border; Judith Hayward; Andrew Papanikitas
Journal:  Eur J Hum Genet       Date:  2021-10-19       Impact factor: 5.351

6.  Controlling my genome with my smartphone: first clinical experiences of the PROMISE system.

Authors:  Ali Amr; Marc Hinderer; Lena Griebel; Dominic Deuber; Christoph Egger; Farbod Sedaghat-Hamedani; Elham Kayvanpour; Daniel Huhn; Jan Haas; Karen Frese; Marc Schweig; Ninja Marnau; Annika Krämer; Claudia Durand; Florian Battke; Hans-Ulrich Prokosch; Michael Backes; Andreas Keller; Dominique Schröder; Hugo A Katus; Norbert Frey; Benjamin Meder
Journal:  Clin Res Cardiol       Date:  2021-10-25       Impact factor: 6.138

7.  Local data commons: the sleeping beauty in the community of data commons.

Authors:  Jong Cheol Jeong; Isaac Hands; Jill M Kolesar; Mahadev Rao; Bront Davis; York Dobyns; Joseph Hurt-Mueller; Justin Levens; Jenny Gregory; John Williams; Lisa Witt; Eun Mi Kim; Carlee Burton; Amir A Elbiheary; Mingguang Chang; Eric B Durbin
Journal:  BMC Bioinformatics       Date:  2022-09-23       Impact factor: 3.307

8.  Public Deliberation Process on Patient Perspectives on Health Information Sharing: Evaluative Descriptive Study.

Authors:  Minakshi Raj; Kerry Ryan; Paige Nong; Karen Calhoun; M Grace Trinidad; Raymond De Vries; Melissa Creary; Kayte Spector-Bagdady; Sharon L R Kardia; Jodyn Platt
Journal:  JMIR Cancer       Date:  2022-09-16

9.  A concentric circles view of health data relations facilitates understanding of sociotechnical challenges for learning health systems and the role of federated data networks.

Authors:  Richard Milne; Mark Sheehan; Brendan Barnes; Janek Kapper; Nathan Lea; James N'Dow; Gurparkash Singh; Amelia Martín-Uranga; Nigel Hughes
Journal:  Front Big Data       Date:  2022-09-16
  9 in total

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