Bartha M Knoppers

Bartha M Knoppers

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Bartha M Knoppers

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Correction to: Accelerating evidence gathering and approval of precision medicine therapies: the FDA takes aim at rare mutations.

Genet Med 2019 Aug;21(8):1894-1900

Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.

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http://dx.doi.org/10.1038/s41436-018-0264-5DOI Listing
August 2019

The Human Right to Science and the Regulation of Human Germline Engineering.

CRISPR J 2019 Jun;2:134-142

4 Loyola Law School, Los Angeles, California.

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http://dx.doi.org/10.1089/crispr.2018.0053DOI Listing
June 2019

Accelerating evidence gathering and approval of precision medicine therapies: the FDA takes aim at rare mutations.

Genet Med 2019 03 10;21(3):542-544. Epub 2018 Jul 10.

Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.

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http://dx.doi.org/10.1038/s41436-018-0099-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6752286PMC
March 2019

Whose Commons? Data Protection as a Legal Limit of Open Science.

J Law Med Ethics 2019 Mar;47(1):106-111

Mark Phillips is an Academic Associate at the Centre of Genomics and Policy at McGill University. He is also a practicing member of the Quebec Bar Association. Bartha M. Knoppers, Ph.D., is the Director of the Centre of Genomics and Policy at McGill University.

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http://journals.sagepub.com/doi/10.1177/1073110519840489
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http://dx.doi.org/10.1177/1073110519840489DOI Listing
March 2019

Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons.

J Law Med Ethics 2019 Mar;47(1):12-20

Amy L. McGuire, J.D., Ph.D., is the Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Dr. McGuire serves on the program committee for the Greenwall Foundation Faculty Scholars Program in Bioethics and is immediate past president of the Association of Bioethics Program Directors. Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine. Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Jessica Bardill, Ph.D., is an Assistant Professor of Indigenous Canadian Literatures and Cultures at Concordia University in Montreal, Quebec. Juli M. Bollinger, M.S., is a Research Associate in the Center for Medical Ethics and Health Policy at the Baylor College of Medicine and a Research Associate and Associate Faculty at the Berman Institute of Bioethics at Johns Hopkins University. Eric Boerwinkle, Ph.D., is the Dean of the University of Texas Health Science Center at Houston, School of Public Health and the Associate Director, Human Genome Sequencing Center at Baylor College of Medicine. Tania Bubela, Ph.D., J.D., is the Dean of the Faculty of Health Sciences at Simon Fraser University and a Fellow of the Canadian Academy of Health Sciences. Patricia Deverka, M.D., M.S., M.B.E., is Director, Value Evidence and Outcomes at Geisinger National Precision Health, where she focuses Outcomes at Geisinger National Precision Health, where she focuses systems and policymakers. Barbara Evans, MS, Ph.D., J.D., LL.M., is the Mary Ann and Lawrence E. Faust Professor of Law and Director of the Center for Biotechnology & Law at the University of Houston Law Center and holds a joint appointment as Professor of Electrical and Computer Engineering at the UH Cullen College of Engineering. Nanibaa' A. Garrison, Ph.D. (Navajo), is an Assistant Professor at the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital and Research Institute and at the Department of Pediatrics at the University of Washington School of Medicine. David Glazer is an engineering director at Verily Life Sciences, where he helps life science organizations use cloud computing to accelerate and scale their work with big data. Melissa M. Goldstein, J.D., is an Associate Professor in the Department of Health Policy and Management at the Milken Institute School of Public Health at the George Washington University. Henry T. Greely, J.D., is the Deane F. and Kate Edelman Johnson Professor of Law and a professor (by courtesy) of Genetics at Stanford University, where he directs the Center for Law and the Biosciences. He is President of the International Neuroethics Society, co-chair of the Neuroethics Work Group of the NIH BRAIN Initiative, and a member of the National Academies' Committee on Science, Technology, and Law. Scott D. Kahn, Ph.D., is the Chief Information Officer at LunaDNA where he is responsible for all informatics and data science strategy. Bartha M. Knoppers, Ph.D., (Comparative Medical Law), is a Full Professor, Canada Research Chair in Law and Medicine and Director of the Centre of Genomics and Policy of the Faculty of Medicine at McGill University. Barbara A. Koenig, Ph.D., is Professor of Bioethics and Medical Anthropology, based at the Institute for Health & Aging, University of California, San Francisco. She also serve as Director of the UCSF Program in Bioethics. J. Mark Lambright, M.B.A., is the Chairman, Trident Advisors, LLC - CEO (Interim), Private Access, Inc. Mark Lambright has been a senior executive of a number of healthcare and technology companies ranging in size from startup to multi-billion in revenue. John Mattison, M.D., is Assistant Medical Director, KP, SCAL, Chief Health Information Officer. Founder of CDA/CCD (XML standard for healthcare interoperability). Co-Editor of Healthcare Information Technology (2017 McGraw Hill). Christopher J. O'Donnell, M.D., M.P.H., is Chief, Cardiology Section and Director, Center for Population Genomics, of the Boston VA Healthcare System and co-Principal Investigator (Chief Scientist) of the national VA Million Veteran Program; and is VA Contact Principal Investigator of the NIH All of Us Research Program. He is also a faculty member of the Department of Medicine, Brigham and Women's Hospital and Associate Professor of Medicine, Harvard Medical School. Arti K. Rai, J.D., is the Elvin R. Latty Professor of Law and co-Director of the Center for Innovation Policy at Duke Law. Laura L. Rodriguez, Ph.D., is the Director of the Division of Policy, Communications, and Education at the National Human Genome Research Institute. Tania Simoncelli, M.S., is the Director of Science Policy at the Chan Zuckerberg Initiative. Formerly Executive Director, Count Me In at the Broad Institute, Assistant Director of Forensic Science and Biomedical Innovation, White House Office of Science & Technology Policy, and Science Advisor to the American Civil Liberties Union. Sharon F. Terry, M.A., is the president and CEO of Genetic Alliance. Adrian Thorogood, B.C.L./LL.B., is a lawyer and Academic Associate at the Centre of Genomics and Policy at McGill University in Montreal, Canada. He manages the Regulatory and Ethics Work Stream of the Global Alliance for Genomics and Health. Michael S. Watson, M.S., Ph.D., is the Executive Director, American College of Medical Genetics and Genomics and ACMG Foundation for Genetic and Genomic Medicine and an Adjunct Professor of Pediatrics at Washington University School of Medicine. John T. Wilbanks is the Chief Commons Officer at Sage Bionetworks, and co-PI on awards for AllofUs Research Program, ELSI Issues in Unregulated Mobile Research, CTSA Center for Data To Health. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University.

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http://dx.doi.org/10.1177/1073110519840480DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6738947PMC
March 2019

Bridging stem cell research and medicine: a learning health system.

Regen Med 2018 09 25;13(6):741-752. Epub 2018 Jul 25.

Centre of Genomics & Policy, Department of Human Genetics, McGill University, Montréal, QC H3A 0G1, Canada.

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http://dx.doi.org/10.2217/rme-2017-0129DOI Listing
September 2018

The Genomic Commons.

Annu Rev Genomics Hum Genet 2018 08 25;19:429-453. Epub 2018 Jan 25.

Centre of Genomics and Policy and Department of Medicine, McGill University, Montreal, Quebec H3A 0G1, Canada; email:

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http://dx.doi.org/10.1146/annurev-genom-083117-021552DOI Listing
August 2018

A roadmap for restoring trust in Big Data.

Lancet Oncol 2018 08;19(8):1014-1015

European Alliance for Personalised Medicine, Brussels, Belgium; Gustave Roussy Cancer Campus Grand Paris, Villejuif, France.

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http://dx.doi.org/10.1016/S1470-2045(18)30425-XDOI Listing
August 2018

Privacy-Preserving Linkage of Genomic and Clinical Data Sets.

IEEE/ACM Trans Comput Biol Bioinform 2019 Jul-Aug;16(4):1342-1348. Epub 2018 Jul 30.

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http://dx.doi.org/10.1109/TCBB.2018.2855125DOI Listing
July 2018

Key Implications of Data Sharing in Pediatric Genomics.

JAMA Pediatr 2018 05;172(5):476-481

Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia, Canada.

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http://dx.doi.org/10.1001/jamapediatrics.2017.5500DOI Listing
May 2018

Criminal Prohibition of Wrongful Re‑identification: Legal Solution or Minefield for Big Data?

J Bioeth Inq 2017 Dec 14;14(4):527-539. Epub 2017 Sep 14.

Centre of Genomics and Policy, Faculty of Medicine, McGill University, 740, Dr. Penfield Avenue, Room 5214, Montreal, Quebec, H3A 0G1, Canada.

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http://dx.doi.org/10.1007/s11673-017-9806-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5715031PMC
December 2017

Ethics approval in applications for open-access clinical trial data: An analysis of researcher statements to clinicalstudydatarequest.com.

PLoS One 2017 8;12(9):e0184491. Epub 2017 Sep 8.

Centre of Genomics and Policy, Department of Human Genetics, McGill University, Montreal, Quebec, Canada.

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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0184491PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5590958PMC
October 2017

Reply to C Harling.

Eur J Hum Genet 2017 09 31;25(9):1030. Epub 2017 May 31.

Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.

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http://dx.doi.org/10.1038/ejhg.2017.89DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5558177PMC
September 2017

Comparative Approaches to Genetic Discrimination: Chasing Shadows?

Trends Genet 2017 05 30;33(5):299-302. Epub 2017 Mar 30.

Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, Montreal, QC H3A 1A4, Canada.

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http://dx.doi.org/10.1016/j.tig.2017.02.002DOI Listing
May 2017

Ethics, big data and computing in epidemiology and public health.

Ann Epidemiol 2017 05 10;27(5):297-301. Epub 2017 May 10.

Miller School of Medicine, Institute for Bioethics and Health Policy, University of Miami, Miami, FL.

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http://dx.doi.org/10.1016/j.annepidem.2017.05.002DOI Listing
May 2017

Whole genome sequencing resource identifies 18 new candidate genes for autism spectrum disorder.

Nat Neurosci 2017 Apr 6;20(4):602-611. Epub 2017 Mar 6.

The Centre for Applied Genomics, Genetics and Genome Biology, The Hospital for Sick Children, Toronto, Canada.

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http://dx.doi.org/10.1038/nn.4524DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5501701PMC
April 2017

Registered access: a 'Triple-A' approach.

Eur J Hum Genet 2016 12 28;24(12):1676-1680. Epub 2016 Sep 28.

Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, Montreal, QC, Canada.

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http://dx.doi.org/10.1038/ejhg.2016.115DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5117919PMC
December 2016

The challenge of informed consent and return of results in translational genomics: empirical analysis and recommendations.

J Law Med Ethics 2014 ;42(3):344-55

Professor and the Chair of Social Medicine in the School of Medicine and an Adjunct Professor of Sociology at the University of North Carolina at Chapel Hill.

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http://dx.doi.org/10.1111/jlme.12151DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4262925PMC
November 2016

Legal approaches regarding health-care decisions involving minors: implications for next-generation sequencing.

Eur J Hum Genet 2016 11 15;24(11):1559-1564. Epub 2016 Jun 15.

Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.

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http://dx.doi.org/10.1038/ejhg.2016.61DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5110060PMC
November 2016

The discombobulation of de-identification.

Nat Biotechnol 2016 11;34(11):1102-1103

Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.

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http://dx.doi.org/10.1038/nbt.3696DOI Listing
November 2016

Are Data Sharing and Privacy Protection Mutually Exclusive?

Cell 2016 11;167(5):1150-1154

Department of Human Genetics, McGill University, Montreal, QC H3A 1B1, Canada.

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http://dx.doi.org/10.1016/j.cell.2016.11.004DOI Listing
November 2016

International Biobanking Summit V: Harmonizing Privacy Laws to Enable International Biobank Research.

Biopreserv Biobank 2016 Oct;14(5):452-453

4 Centre of Genomics and Policy, McGill University, Montréal, Québec, Canada .

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http://dx.doi.org/10.1089/bio.2016.29012.mjbDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6445183PMC
October 2016

Data Sharing - Is the Juice Worth the Squeeze?

N Engl J Med 2016 Oct;375(17):1608-1609

From Rutgers Biomedical and Health Sciences, Newark, NJ (B.L.S.); Hasselt University, Hasselt, and the International Drug Development Institute, Louvain-la-Neuve - both in Belgium (M.E.B.); the United Kingdom Clinical Research Collaboration Board, London (J.H.); and the Center of Genomics and Policy, McGill University, Montreal (B.M.K.).

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http://dx.doi.org/10.1056/NEJMp1610336DOI Listing
October 2016

Data sharing in stem cell translational science: policy statement by the International Stem Cell Forum Ethics Working Party.

Regen Med 2015 27;10(7):857-61. Epub 2015 Oct 27.

McGill University, Centre of Genomics & Policy, 740, Avenue Dr. Penfield, Suite 5200, Montreal (Quebec), H3A 0G1, Canada.

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https://www.futuremedicine.com/doi/10.2217/rme.15.42
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http://dx.doi.org/10.2217/rme.15.42DOI Listing
September 2016

Streamlining ethical review of data intensive research.

BMJ 2016 Aug 2;354:i4181. Epub 2016 Aug 2.

Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.

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http://dx.doi.org/10.1136/bmj.i4181DOI Listing
August 2016

Sharing health-related data: a privacy test?

NPJ Genom Med 2016 Aug;1(1):160241-160246

Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, Montreal, QC, Canada.

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http://dx.doi.org/10.1038/npjgenmed.2016.24DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5158304PMC
August 2016

Stability of Attitudes to the Ethical Issues Raised by the Return of Incidental Genomic Research Findings in Children: A Follow-Up Study.

Public Health Genomics 2015 10;18(5):299-308. Epub 2015 Sep 10.

Department of Pediatrics, IWK Health Centre and Dalhousie University, Halifax, N.S., Canada.

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http://dx.doi.org/10.1159/000439244DOI Listing
June 2016

An International Framework for Data Sharing: Moving Forward with the Global Alliance for Genomics and Health.

Biopreserv Biobank 2016 Jun 15;14(3):256-9. Epub 2016 Apr 15.

Centre of Genomics and Policy , Montreal, Canada .

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http://dx.doi.org/10.1089/bio.2016.0005DOI Listing
June 2016

A step forward for data protection and biomedical research.

Lancet 2016 Apr;387(10026):1374-1375

Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.

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http://dx.doi.org/10.1016/S0140-6736(16)30078-2DOI Listing
April 2016

How mutually recognizable is mutual recognition? An international terminology index of research ethics review policies in the USA, Canada, UK and Australia.

Per Med 2016 Mar 1;13(2):101-105. Epub 2016 Mar 1.

Faculty of Medicine, Centre of Genomics & Policy, 740 Ave. Dr., Penfield Suite 5200, Montreal, QC, H3A 0G1, Canada.

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http://dx.doi.org/10.2217/pme.15.52DOI Listing
March 2016

Statement of principles on the return of research results and incidental findings in paediatric research: a multi-site consultative process.

Genome 2015 Dec 10;58(12):541-8. Epub 2015 Nov 10.

e Sainte-Justine University Health Center, Research Center, Department of Pediatrics, University of Montreal, 3175 Chemin de la Côte Sainte-Catherine, Montreal, QC H3T 1C5, Canada.

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https://tspace.library.utoronto.ca/bitstream/1807/70316/1/ge
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http://www.nrcresearchpress.com/doi/10.1139/gen-2015-0092
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http://dx.doi.org/10.1139/gen-2015-0092DOI Listing
December 2015

Genomic cloud computing: legal and ethical points to consider.

Eur J Hum Genet 2015 Oct 24;23(10):1271-8. Epub 2014 Sep 24.

Centre of Genomics and Policy, McGill University, Montreal, QC, Canada.

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http://dx.doi.org/10.1038/ejhg.2014.196DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4592072PMC
October 2015

Data Safe Havens in health research and healthcare.

Bioinformatics 2015 Oct 25;31(20):3241-8. Epub 2015 Jun 25.

Public Population Project in Genomics and Society (PG), Montreal, QC H3A 0G1, Canada, Centre of Genomics and Policy, McGill University, Montreal, QC H3A 0G1, Canada.

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http://dx.doi.org/10.1093/bioinformatics/btv279DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4595892PMC
October 2015

Data analysis: Create a cloud commons.

Nature 2015 Jul;523(7559):149-51

European Molecular Biology Laboratory, Heidelberg, Germany.

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http://dx.doi.org/10.1038/523149aDOI Listing
July 2015

Where Next for Genetics and Genomics?

PLoS Biol 2015 Jul 30;13(7):e1002216. Epub 2015 Jul 30.

The Wellcome Trust Centre for Human Genetics, University of Oxford, Oxford, United Kingdom.

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http://dx.doi.org/10.1371/journal.pbio.1002216DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4520474PMC
July 2015

Oversight of human inheritable genome modification.

Nat Biotechnol 2015 May;33(5):454-5

Centre of Genomics and Policy, McGill University and Génome Québec Innovation Centre, Montreal, Quebec, Canada.

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http://dx.doi.org/10.1038/nbt.3231DOI Listing
May 2015

Developing Educational Resources to Advance Umbilical Cord Blood Banking and Research: A Canadian Perspective.

J Obstet Gynaecol Can 2015 May;37(5):443-450

Centre of Genomics and Policy, McGill University, Montreal QC.

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http://dx.doi.org/10.1016/S1701-2163(15)30260-7DOI Listing
May 2015

DataSHIELD: taking the analysis to the data, not the data to the analysis.

Int J Epidemiol 2014 Dec 26;43(6):1929-44. Epub 2014 Sep 26.

School of Social and Community Medicine, University of Bristol, Bristol, UK, Maelstrom Research Group, Research Institute of the McGill University Health Centre, McGill University, Montreal, Canada, Norwegian Institute of Public Health, Oslo, Norway, Department Statistical Science, University College London, London, UK, Department of Infection, Immunity and Inflammation, Health Sciences, University of Leicester, Leicester, UK, Institute for Molecular Medicine Finland (FIMM), University of Helsinki, Helsinki, Finland, Unit of Public Health Genomics, National Institute for Health and Welfare, Helsinki, Finland, Department of Health Sciences, University of Leicester, Leicester, UK, Department of Sociology, University of Leicester, Leicester, UK, Department of Epidemiology, University Medical Center Groningen, Groningen, The Netherlands, Institut für Community Medicine, University Medicine of Greifswald, Greifswald, Germany, International Prevention Research Institute, Lyon, France, Telethon Kids Institute, University of Western Australia, Perth, WA, Australia, School of Geosciences, University of Edinburgh, Edinburgh, UK, Norwegian University of Science and Technology, Levanger, Norway, HRB Centre for Diet and Health Research, Department of Epidemiology and Public Health, University College Cork, Cork, Ireland, Research Unit of Molecular Epidemiology, Research Center for Environmental Health, Neuherberg, Germany, MRC/CSO Social and Public Health Sciences Unit, University of Glasgow, Glasgow, UK, University of Tartu, Estonian Genome Center, Tartu, Estonia, University Medical Center Groningen, Medical Statistics, Groningen, The Netherlands, Centre of Genomics and Policy, McGill University, Montreal, Canada, University Medical Center Groningen, LifeLines Cohort Study, Groningen, The Netherlands, Department of Endocrinology, University Medical Center Groningen, Groningen, The Netherlands, School of Social and Community Medicine, University of Bristol, Bristol, UK and Onta

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http://dx.doi.org/10.1093/ije/dyu188DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4276062PMC
December 2014

What are some of the ELSI challenges of international collaborations involving biobanks, global sample collection, and genomic data sharing and how should they be addressed?

Biopreserv Biobank 2014 Dec;12(6):363-4

1 Centre of Genomics and Policy, McGill University , Montreal, Quebec, Canada .

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http://dx.doi.org/10.1089/bio.2014.1263DOI Listing
December 2014

Does policy grow on trees?

BMC Med Ethics 2014 Dec 22;15:87. Epub 2014 Dec 22.

Centre of Genomics and Policy, McGill University, Montreal H3A 0G1, Canada.

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http://dx.doi.org/10.1186/1472-6939-15-87DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4293010PMC
December 2014

Data sharing, year 1--access to data from industry-sponsored clinical trials.

N Engl J Med 2014 Nov 15;371(22):2052-4. Epub 2014 Oct 15.

From Rutgers Biomedical and Health Sciences, Newark, NJ (B.L.S.); Hasselt University, Hasselt, and the International Drug Development Institute, Louvain-la-Neuve - both in Belgium (M.B.); the United Kingdom Clinical Research Collaboration Board, London (J.H.); and the Center of Genomics and Policy, McGill University, Montreal (B.M.K.).

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http://dx.doi.org/10.1056/NEJMp1411794DOI Listing
November 2014

[Personalized medicine: equity and access].

Med Sci (Paris) 2014 Nov 17;30 Spec No 2:27-31. Epub 2014 Nov 17.

Centre de génomique et politique, université McGill, 740 avenue du Dr Penfield, Montréal, Québec H3A 0G1, Canada.

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http://dx.doi.org/10.1051/medsci/201430s206DOI Listing
November 2014

The ethical framing of personalized medicine.

Curr Opin Allergy Clin Immunol 2014 Oct;14(5):404-8

Centre of Genomics and Policy, McGill University, Montreal, Canada.

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http://dx.doi.org/10.1097/ACI.0000000000000091DOI Listing
October 2014

Data protection and consent to biomedical research: a step forward?

Lancet 2014 Sep;384(9946):855

Centre of Genomics and Policy, McGill University, Montreal, QC H3A 0G1, Canada. Electronic address:

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http://dx.doi.org/10.1016/S0140-6736(14)61488-4DOI Listing
September 2014

A human rights approach to an international code of conduct for genomic and clinical data sharing.

Hum Genet 2014 Jul 27;133(7):895-903. Epub 2014 Feb 27.

Centre of Genomics and Policy, McGill University, 740 Dr. Penfield Avenue, Suite 5200, Montreal, H3A 0G1, Canada,

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http://dx.doi.org/10.1007/s00439-014-1432-6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4053599PMC
July 2014

International ethics harmonization and the global alliance for genomics and health.

Genome Med 2014 27;6(2):13. Epub 2014 Feb 27.

Centre of Genomics and Policy, McGill University, 740 Dr. Penfield Avenue, Suite 5200, Montreal H3A 0G1, Canada.

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http://dx.doi.org/10.1186/gm530DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3979077PMC
July 2014

An ethics safe harbor for international genomics research?

Genome Med 2013 22;5(11):99. Epub 2013 Nov 22.

Centre of Genomics and Policy, McGill University, 740 Dr. Penfield Avenue, Suite 5200, Montreal H3A 0G1, Canada.

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http://genomemedicine.biomedcentral.com/articles/10.1186/gm5
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http://dx.doi.org/10.1186/gm503DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3978721PMC
May 2014

Towards an ethics safe harbor for global biomedical research.

J Law Biosci 2014 Mar 14;1(1):3-51. Epub 2014 Feb 14.

Centre of Genomics and Policy, McGill University, Montreal, Canada.

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http://dx.doi.org/10.1093/jlb/lst002DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5033519PMC
March 2014

An international effort towards developing standards for best practices in analysis, interpretation and reporting of clinical genome sequencing results in the CLARITY Challenge.

Authors:
Catherine A Brownstein Alan H Beggs Nils Homer Barry Merriman Timothy W Yu Katherine C Flannery Elizabeth T DeChene Meghan C Towne Sarah K Savage Emily N Price Ingrid A Holm Lovelace J Luquette Elaine Lyon Joseph Majzoub Peter Neupert David McCallie Peter Szolovits Huntington F Willard Nancy J Mendelsohn Renee Temme Richard S Finkel Sabrina W Yum Livija Medne Shamil R Sunyaev Ivan Adzhubey Christopher A Cassa Paul I W de Bakker Hatice Duzkale Piotr Dworzyński William Fairbrother Laurent Francioli Birgit H Funke Monica A Giovanni Robert E Handsaker Kasper Lage Matthew S Lebo Monkol Lek Ignaty Leshchiner Daniel G MacArthur Heather M McLaughlin Michael F Murray Tune H Pers Paz P Polak Soumya Raychaudhuri Heidi L Rehm Rachel Soemedi Nathan O Stitziel Sara Vestecka Jochen Supper Claudia Gugenmus Bernward Klocke Alexander Hahn Max Schubach Mortiz Menzel Saskia Biskup Peter Freisinger Mario Deng Martin Braun Sven Perner Richard J H Smith Janeen L Andorf Jian Huang Kelli Ryckman Val C Sheffield Edwin M Stone Thomas Bair E Ann Black-Ziegelbein Terry A Braun Benjamin Darbro Adam P DeLuca Diana L Kolbe Todd E Scheetz Aiden E Shearer Rama Sompallae Kai Wang Alexander G Bassuk Erik Edens Katherine Mathews Steven A Moore Oleg A Shchelochkov Pamela Trapane Aaron Bossler Colleen A Campbell Jonathan W Heusel Anne Kwitek Tara Maga Karin Panzer Thomas Wassink Douglas Van Daele Hela Azaiez Kevin Booth Nic Meyer Michael M Segal Marc S Williams Gerard Tromp Peter White Donald Corsmeier Sara Fitzgerald-Butt Gail Herman Devon Lamb-Thrush Kim L McBride David Newsom Christopher R Pierson Alexander T Rakowsky Aleš Maver Luca Lovrečić Anja Palandačić Borut Peterlin Ali Torkamani Anna Wedell Mikael Huss Andrey Alexeyenko Jessica M Lindvall Måns Magnusson Daniel Nilsson Henrik Stranneheim Fulya Taylan Christian Gilissen Alexander Hoischen Bregje van Bon Helger Yntema Marcel Nelen Weidong Zhang Jason Sager Lu Zhang Kathryn Blair Deniz Kural Michael Cariaso Greg G Lennon Asif Javed Saloni Agrawal Pauline C Ng Komal S Sandhu Shuba Krishna Vamsi Veeramachaneni Ofer Isakov Eran Halperin Eitan Friedman Noam Shomron Gustavo Glusman Jared C Roach Juan Caballero Hannah C Cox Denise Mauldin Seth A Ament Lee Rowen Daniel R Richards F Anthony San Lucas Manuel L Gonzalez-Garay C Thomas Caskey Yu Bai Ying Huang Fang Fang Yan Zhang Zhengyuan Wang Jorge Barrera Juan M Garcia-Lobo Domingo González-Lamuño Javier Llorca Maria C Rodriguez Ignacio Varela Martin G Reese Francisco M De La Vega Edward Kiruluta Michele Cargill Reece K Hart Jon M Sorenson Gholson J Lyon David A Stevenson Bruce E Bray Barry M Moore Karen Eilbeck Mark Yandell Hongyu Zhao Lin Hou Xiaowei Chen Xiting Yan Mengjie Chen Cong Li Can Yang Murat Gunel Peining Li Yong Kong Austin C Alexander Zayed I Albertyn Kym M Boycott Dennis E Bulman Paul M K Gordon A Micheil Innes Bartha M Knoppers Jacek Majewski Christian R Marshall Jillian S Parboosingh Sarah L Sawyer Mark E Samuels Jeremy Schwartzentruber Isaac S Kohane David M Margulies

Genome Biol 2014 Mar 25;15(3):R53. Epub 2014 Mar 25.

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http://dx.doi.org/10.1186/gb-2014-15-3-r53DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4073084PMC
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Whole-genome sequencing in newborn screening programs.

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Department of Human Genetics, McGill University, Montreal, Quebec H3A OG1, Canada.

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Exploring resources for intrafamilial communication of cancer genetic risk: we still need to talk.

Eur J Hum Genet 2013 Sep 23;21(9):903-10. Epub 2013 Jan 23.

Department of Human Genetics, Faculty of Medicine, Centre for Genomics and Policy, McGill University, Montreal, QC, Canada.

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http://dx.doi.org/10.1038/ejhg.2012.286DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3746262PMC
September 2013

From tissues to genomes.

G3 (Bethesda) 2013 Aug 7;3(8):1203-4. Epub 2013 Aug 7.

Centre of Genomics and Policy, Faculty of Medicine, Department of Human Genetics, McGill University, Montreal, Quebec, Canada.

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http://dx.doi.org/10.1534/g3.113.007443DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3737159PMC
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Whole-genome sequencing in health care. Recommendations of the European Society of Human Genetics.

Eur J Hum Genet 2013 Jun;21 Suppl 1:S1-5

Section Community Genetics, Department of Clinical Genetics and EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.

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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3660957PMC
June 2013

Personalized medicine and access to health care: potential for inequitable access?

Eur J Hum Genet 2013 Feb 11;21(2):143-7. Epub 2012 Jul 11.

Department of Human Genetics, Centre for Genomics and Policy, Faculty of Medicine, McGill University, Montreal, QC, Canada.

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http://dx.doi.org/10.1038/ejhg.2012.149DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3548263PMC
February 2013

Data sharing in the post-genomic world: the experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO).

PLoS Comput Biol 2012 12;8(7):e1002549. Epub 2012 Jul 12.

International Data Access Committee, International Cancer Genome Consortium, Toronto, Ontario, Canada.

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http://dx.doi.org/10.1371/journal.pcbi.1002549DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3395593PMC
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Emerging issues in paediatric health research consent forms in Canada: working towards best practices.

BMC Med Ethics 2013 Jan 30;14. Epub 2013 Jan 30.

Department of Human Genetics, Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, QC, H3A 0G1, Canada.

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http://dx.doi.org/10.1186/1472-6939-14-5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3571865PMC
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Preconception care and genetic risk: ethical issues.

J Community Genet 2012 Jul 29;3(3):221-8. Epub 2011 Dec 29.

Department of Health, Ethics & Society, Faculty of Health, Medicine & Life Sciences, Research Schools CAPHRI and GROW, Maastricht University, Maastricht, The Netherlands.

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http://link.springer.com/10.1007/s12687-011-0074-9
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3419287PMC
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Disclosure and management of research findings in stem cell research and banking: policy statement.

Regen Med 2012 May;7(3):439-48

Center of Genomics & Policy, Faculty of Medicine, Department of Human Genetics, McGill University, Montreal, QC, Canada.

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http://dx.doi.org/10.2217/rme.12.23DOI Listing
May 2012

Power to the people: a wiki-governance model for biobanks.

Genome Biol 2012 May 29;13(5):158. Epub 2012 May 29.

Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, 740 Dr Penfield Avenue, Suite 5200, Montreal, Quebec, H3A 0G1, Canada.

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http://dx.doi.org/10.1186/gb-2012-13-5-158DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3446283PMC
May 2012

Paediatric biobanks: what makes them so unique?

J Paediatr Child Health 2012 Feb 29;48(2):E1-3. Epub 2011 Apr 29.

FRSQ, Quebec, Canada.

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http://dx.doi.org/10.1111/j.1440-1754.2011.02072.xDOI Listing
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From banking to international governance: fostering innovation in stem cell research.

Stem Cells Int 2011 5;2011:498132. Epub 2011 Sep 5.

Centre of Genomics and Policy, McGill University, Montreal, QC, Canada H3A 1A1.

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http://dx.doi.org/10.4061/2011/498132DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3167189PMC
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Sustained interaction: the new normal for stem cell repositories?

Regen Med 2011 Nov;6(6):783-92

Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.

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https://www.futuremedicine.com/doi/10.2217/rme.11.93
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November 2011

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

Stem Cell Rev Rep 2011 Sep;7(3):482-4

International Stem Cell Forum Ethics Working Party. Centre of Genomics and Policy, Faculty of Medicine, Department of Human Genetics McGill University, 740 Dr. Penfield Avenue, Rm 5214, Montreal, QC, H3A 1A4, Canada.

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http://dx.doi.org/10.1007/s12015-010-9226-2DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3137773PMC
September 2011

Genomic databases access agreements: legal validity and possible sanctions.

Hum Genet 2011 Sep 25;130(3):441-9. Epub 2011 Jun 25.

Deptartment of Human Genetics, Faculty of Medicine, Centre of Genomics and Policy, McGill University, 740 Dr. Penfield Avenue, Suite 5101, Montreal, QC H3A 1A4, Canada.

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http://dx.doi.org/10.1007/s00439-011-1044-3DOI Listing
September 2011

Steering vaccinomics innovations with anticipatory governance and participatory foresight.

OMICS 2011 Sep 17;15(9):637-46. Epub 2011 Aug 17.

Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, Montreal, QC, Canada.

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http://dx.doi.org/10.1089/omi.2011.0087DOI Listing
September 2011

Trade-secret model: legal limitations.

Science 2011 Sep;333(6049):1575; author reply 1575-6

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September 2011

Policy and data-intensive scientific discovery in the beginning of the 21st century.

OMICS 2011 Apr;15(4):221-5

Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, Montreal, QC, Canada.

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http://dx.doi.org/10.1089/omi.2011.0007DOI Listing
April 2011

ACCE, pharmacogenomics, and stopping clinical trials: time to extend the CONSORT statement?

Am J Bioeth 2011 Mar;11(3):11-3

Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, 740 Dr. Penfield, Montreal, QC, Canada.

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http://dx.doi.org/10.1080/15265161.2010.546477DOI Listing
March 2011

Nutriproteomics and Proteogenomics: Cultivating Two Novel Hybrid Fields of Personalized Medicine with Added Societal Value.

Curr Pharmacogenomics Person Med 2010 Dec;8(4):240-244

Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, Montreal, QC, Canada.

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http://dx.doi.org/10.2174/187569210793368230DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3052357PMC
December 2010

The commercialization of genomic research in Canada.

Healthc Policy 2010 Nov;6(2):24-32

Assistant Professor, Department of Human Genetics, Faculty of Medicine, McGill University, Montreal, QC.

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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3016633PMC
November 2010

Stem cell banking: between traceability and identifiability.

Genome Med 2010 Oct 5;2(10):73. Epub 2010 Oct 5.

Centre of Genomics and Policy, McGill University, 740 Dr Penfield Avenue, Suite 5206, Montreal, QC, H3A 1A4, Canada.

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October 2010