. CGP Centre of Genomics and Policy CGP Centre of Genomics and Policy

CPG Centre of Genomics and policy

Publications

Bartha Maria Knoppers

2019

Author(s) Beauvais M., Knoppers B.M.
Title When information is the treatment? Precision medicine in healthcare
Reference

Beauvais M, Knoppers BM. When information is the treatment? Precision medicine in healthcare. Healthcare Management Forum. September 2019. doi:10.1177/0840470419859017


Author(s) Boggio A., Knoppers B.M., Almqvist J., Romano C.P.R.
Title The Human Right to Science and the Regulation of Human Germline Engineering
Reference

Boggio A, Knoppers BM, Almqvist J, Romano CPR. The Human Right to Science and the Regulation of Human Germline Engineering. The CRISPR Journal. 2019; 2(3).


Author(s) Bubela T., Kleiderman E., Master Z., Ogbogu U. et al. (including Knoppers B.M.)
Title Canada’s Assisted Human Reproduction Act: Pragmatic reforms in support of research
Reference

 (2019) 6 Frontiers in Medicine, 157


Author(s) Dalpé G., Thorogood A., Knoppers B.M.
Title A Tale of Two Capacities: Including Children and Decisionally Vulnerable Adults in Biomedical Research
Reference

Dalpé G, Thorogood A, Knoppers BM. A Tale of Two Capacities: Including Children and Decisionally Vulnerable Adults in Biomedical Research. Frontiers in Genetics. 2019; 10(289): 1-12.


Author(s) Fortier I., Dragieva N., Saliba M., et al. (including Knoppers B.M.)
Title Harmonization of the Health and Risk Factor Questionnaire data of the Canadian Partnership for Tomorrow Project: a descriptive analysis
Reference

Fortier I, Dragieva N, Saliba M, Craig C, Robson P (on behalf of the Canadian Partnership for Tomorrow Project Scientific Directors and Principal Investigators and of the Harmonization Standing Committee), Awadalla P, Dummer TJB, Hicks JMT, Jacquemont SMD, Knoppers BM, Le N, Mes-Masson AM, McLaughlin J, Moore C, Nuyt AM, Parker L, Spinelli J, Vena J, Bergeron J, Flanagan T, Gao C, Lai C, Martin T, McDonald K, McDonald T, Nechba A, Payette Y, Rosner W. Harmonization of the Health and Risk Factor Questionnaire data of the Canadian Partnership for Tomorrow Project: a descriptive analysis. Canadian Association Medical Journal. 2019; 7(2): E272-E282.


Author(s) Kleiderman E., Ravitsky V., Knoppers B.M.
Title The ‘serious’ factor in germline modification
Reference

 (2019) Journal of Medical Ethics, doi: 10.1136/medethics-2019-105436.


Author(s) Kleiderman E., Thompson R., Boily A., Borry P. et al. (including Knoppers B.M.)
Title Doping controls and the "mature minor" elite athlete: Towards clarification?
Reference

 (2019) International Journal of Sport Policy and Politics, doi: 10.1080/19406940.2019.1680416


Author(s) Knoppers B.M.
Title Need is great for evidence-based policies on stem cell research
Reference

Knoppers BM. Need is great for evidence-based policies on stem cell research. iPolitics. 2019.


Author(s) Knoppers B.M. & Kleiderman E.
Title "CRISPR babies": What does this mean for science and Canada?
Reference

 (2019) 191:4 Canadian Medical Association Journal, E91-E92


Author(s) Knoppers B.M. & Kleiderman E.
Title Heritable genome editing: Who speaks for “future” children?
Reference

 (2019) 2:5 The CRISPR Journal, 285-292


Author(s) Knoppers B.M., Thorogood A., Zawati M.H.
Title Letter: Relearning the 3 R’s? Reinterpretation, recontact, and return of genetic variants
Reference

Bartha M. Knoppers, Adrian Thorogood, Ma’n H. Zawati, “Letter: Relearning the 3 R’s? Reinterpretation, recontact, and return of genetic variants”, (2019) Genetics in Medicine, doi:10.1038/s41436-019-0494-1.


Author(s) Lévesque E., Hagan J., Knoppers B.M., Simard J.
Title Organizational challenges to equity in the delivery of services within a new personalized risk-based approach to breast cancer screening
Reference

Lévesque E, Hagan J, Knoppers BM, Simard J. Organizational challenges to equity in the delivery of services within a new personalized risk-based approach to breast cancer screening. New Genetics and Society. 2019; 38:1.


Author(s) McGuire A.L., Majumder M.A., Villanueva A.G., Bardill J., et al. (including Knoppers B.M. and Thorogood A.)
Title Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons
Reference

McGuire AL, Majumder MA, Villanueva AG, Bardill J, Bollinger JM, Boerwinkle E, Bubela T, Deverka PA, Evans BJ, Garrison NA, Glazer D, Goldstein MM, Greely HT, Khan SD, Knoppers BM, Koenig BA, Lambright M, Mattison JE, O’Donnell C, Rai AK, Rodriguez LL, Simoncelli T, Terry SF, Thorogood AT, Watson MS, Wilbanks JT, Cook-Deegan R. Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons. The Journal of Law, Medicine and Ethics. 2019; 47(1): 12-20.


Author(s) Phillips M., Knoppers B.M.
Title Whose Commons? Data Protection as a Legal Limit of Open Science
Reference

Phillips M, Knoppers BM. Whose Commons? Data Protection as a Legal Limit of Open Science. Journal of Law, Medicine & Ethics. 2019; 47: 106-111.


Author(s) Ravitsky V., Nguyen M.T., Birko S., Kleiderman E. et al. (including Knoppers B.M.)
Title Pre-implantation genetic diagnosis (PGD): The road forward in Canada
Reference

 (2019) 41:1 Journal of Obstetrics and Gynaecology Canada, 68-71


Author(s) Rothstein M.A., Zawati M.H., Knoppers B.M.
Title Regulatory Landscape of International Direct-to-Participant (DTP) Genomic Research: Time to Untie the Gordian Knot?
Reference

Mark A Rothstein, Ma’n H. Zawati & Bartha Maria Knoppers, “Regulatory Landscape of International Direct-to-Participant (DTP) Genomic Research: Time to Untie the Gordian Knot?" (2019) 47(2) The Journal of Law, Medicine & Ethics, 336-341.


Author(s) Zawati M.H., Knoppers B.M.
Title Reciprocity and the Quest for Meaningful Disclosure
Reference

Zawati MH, Knoppers BM. Reciprocity and the Quest for Meaningful Disclosure. The American Journal of Bioethics. 2019; 15(5): 36-38.


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2018

Author(s) Baker D., Knoppers B.M., Phillips M. et al.
Title Privacy-Preserving Linkage of Genomic and Clinical Data Sets
Reference

IEEE/ACM Transactions on Computational Biology and Bioinformatics (in press)

https://ieeexplore.ieee.org/document/8423499

Author(s) Cline, M. S., Liao, R. G., Parsons, M. T., Paten, B., Alquaddoomi, F., Antoniou, A., ... Thorogood A., Knoppers B.M. & Couch, F. J.
Title BRCA Challenge: BRCA Exchange as a Global Resource for Variants in BRCA1 and BRCA2
Reference

PLoS Genetics 14, no. 12 (2018): e1007752.
 


Author(s) Contreras J., Knoppers B.M.
Title The Genomic Commons. Annual Review of Genomics and Human Genetics
Reference

 2018; 19: 1.1-1.25.


Author(s) Dummer T.J.B., Awadalla P., et al. (including Knoppers B.M., Zawati M.)
Title The Canadian Partnership for Tomorrow Project: a pan-Canadian platform for research on chronic disease prevention
Reference

(2018) 109:23 Canadian Medical Association Journal (CMAJ), E710-E717.


Author(s) Germain L., Larouche D., Nedelec B., Perreault I., Duranceau L., Bortoluzzi P., Beaudoin C., Genest H., Caouette-Laberge L., Dumas A., Bussiere A., Boghossian E., Kanevsky J., Leclerc Y., Lee J., Nguyen M.T., Bernier V., Knoppers B.M., Moulin V.J., Auger F.
Title Autologous Bilayered Self-Assembled Skin Substitutes (SASSs) as Permanent Grafts: A Case Series of 14 Severely Burned Patients Indicating Clinical Effectiveness
Reference

 (2018) 36 European Cells and Materials, 123-136.

https://pdfs.semanticscholar.org/944d/e594429eb17f1b95e7cca45b67e06ba9ac1e.pdf?_ga=2.49227686.1648337741.1544713826-1215184509.1544713826

Author(s) Kirby E., Tassé A.M., Ma’n H. Zawati M., Knoppers B.M.
Title L’accès et le partage de l’information par les chercheurs en génomique
Reference

 Document d’orientation politique (Montréal: Génome Québec, 2018).


Author(s) Kirby E., Tassé A.M., Zawati M., Knoppers B.M.
Title Data Access and Sharing by Researchers in Genomics
Reference

 (Montréal: Génome Québec, March 2018).


Author(s) Kleiderman E., Boily A., Hasilo C., Knoppers B.M.
Title Overcoming barriers to facilitate the regulation of multi-centre regenerative medicine clinical trials
Reference

 (2018) 9:1 Stem Cell Research & Therapy, 307-315


Author(s) Kleiderman E., Boily A., Knoppers B.M.
Title Genetically enhanced minors: Whose responsibility?
Reference

 (2018) 18:6 The American Journal of Bioethics, 24-26


Author(s) Knoppers B.M.
Title Wider human-rights focus for health data
Reference

(2018) 558 Nature 189


Author(s) Knoppers B.M., Nguyen M.T., Noohi F., Kleiderman E.
Title L’ingénierie ciblée du génome humain: considérations éthiques et politiques
Reference

Document d'orientation politique (Montréal: Génome Québec, 2018)


Author(s) Lévesque E., Hagan J., Knoppers B.M. & Simard J.
Title Organizational challenges to equity in the delivery of services within a new personalized risk-based approach to breast cancer screening
Reference

(2018) New Genetics and Society, DOI: 10.1080/14636778.2018.1549477

https://doi.org/10.1080/14636778.2018.1549477

Author(s) Ogbogu U., Zarzeczny A., Baltz J., Bedford P., et al. (including Kleiderman E., Nguyen M.T., Noohi F. and Knoppers B.M.)
Title Research on human embryos and reproductive materials: Revisiting Canadian law and policy
Reference

 (2018) 13:3 Healthcare Policy, 10-19


Author(s) Rahimzadeh V., Schickhardt C., Knoppers B.M., Sénécal K. et al.
Title Key Implications of Data Sharing in Pediatric Genomics
Reference

 (2018) 172: 5, JAMA Pediatrics, 476-481.


Author(s) Rothstein M.A., Harrell H.L., Saulnier K.M., Dove E.S., Fan C.T., Hung T.-H., Nnamuchi O, Obadia A., Siegal G., Knoppers B.M.
Title Broad Consent for Future Research: International Perspectives
Reference

 (2018) 40:6 IRB: Ethics & Human Research., 7-12.


Author(s) Sénécal K., Unim B., Knoppers B.M.
Title Newborn Screening Programs: Next Generation Ethical and Social Issues
Reference

 (2018) 2: 3, OBM Genetics, 1-15.


Author(s) Thorogood A., Dalpé G., McLauchlan D. & Knoppers B.M.
Title Canadian Consent and Capacity Regulation: Undermining Dementia Research and Human Rights?
Reference

 McGill Journal of Law & Health 12:1


Author(s) Thorogood A., Knoppers B.M.
Title Human Cell Atlas White Paper: Ethics, Legal, and Regulatory Principles
Reference

 (Oct 2017).


Author(s) Touré S.B., Kleiderman E., Knoppers B.M.
Title Bridging stem cell research and medicine: a learning health system
Reference

 (2018) 13:6 Regenerative Medicine, 741-752


Author(s) Vears D., Sénécal K., Clarke A., Jackson L., Laberge A.M., Lovrecic L., Piton A., von Gassen K., Yntema H., Knoppers B.M., Borry P.
Title Points to consider for laboratories reporting results from diagnostic genomic sequencing
Reference

 European Journal of Human Genetics. 2018; 26: 36-43.


Author(s) Widschwendter M., Jones A., Evans I., et al. (including Tassé A.M., Knoppers B.M., Joly Y.)
Title Epigenome-based cancer risk prediction: rationale, opportunities and challenges
Reference

 Nature Reviews Clinical Oncology. 2018.


Author(s) Zawati M.H., Joly Y., Knoppers B.M.
Title L’autonomie basée sur l’individualisme libéral : les limites dans le contexte des biobanques populationnelles
Reference

in Hervé C, eds., Mélanges, (2018), 279-293.

 


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2017

Author(s) Boycott K.M., Rath A., Chong J.X., Hartley T., Alkuraya F.S., Baynam G., Brookes A.J., Brudno M., Carracedo A., den Dunnen J.T., Dyke S.O.M., Estivill X., Goldblatt J., Gonthier C., Groft S.C., Gut I., Hamosh A., Hieter P., Höhn S., Hurles M.E., Kaufmann P., Knoppers B.M., et al.
Title International Cooperation to Enable the Diagnosis of All Rare Genetic Diseases
Reference

 (2017) 100:5 AJHG ScienceDirect 

http://www.sciencedirect.com/science/article/pii/S0002929717301477

Author(s) Deverka P.A., Majumder M.A., Villanueva A.G., et al. (including Knoppers B.M.)
Title Creating a Data Resource: What Will It Take to Build a Medical Information Commons?
Reference

 Genome Medicine. 2017; 9(84):1-5.


Author(s) Dyke S.O.M., Knoppers B.M., Hamosh A., Firth H.V., Hurles M., Brudno M., Boycott K.M., Philippakis A.A., Rehm H.L.
Title "Matching" consent to purpose: The example of the Matchmaker Exchange
Reference

 Hum Mutat. 38(10): 1281-1285. doi:10.1002/humu.23278. Epub 2017 Jul 12.


Author(s) Joly Y, Ngueng Feze I., Song L.Q, Knoppers B.M.
Title Comparative Approaches to Genetic Discrimination: Chasing Shadows?
Reference

 2017 May;33(5):Trends. Genet. 299-302. doi: 10.1016/j.tig.2017.02.002. Epub 2017 Mar 30.

https://www.ncbi.nlm.nih.gov/pubmed/28365141

Author(s) Joly Y., Song L., Ngueng Feze I., Knoppers B.M.
Title Normative Approaches to Address Genetic Discrimination: Placebo or Placenta?
Reference

 SSRN, 2017.


Author(s) Knoppers B.M., Isasi R., Caulfield T., Kleiderman E., et al.
Title Human Gene Editing: Revisiting Canadian Policy
Reference

 (2017) 2:3 npj Regenerative Medicine, 1


Author(s) Knoppers B.M., Leader A., Hume S., Shoubridge E.A., et al. (including Noohi F. and Kleiderman E.)
Title Mitochondrial Replacement Therapy: The Road to the Clinic in Canada
Reference

(2017) 39:10 Journal of Obstetrics and Gynaecology Canada, 916  


Author(s) Knoppers B.M., Thorogood A.
Title Ethics and Big Data in Health
Reference

 Current Opinion in Systems Biology. 2017; 4: 53-57.


Author(s) Lawler M., et al. (including Knoppers B.M. and the Clinical Cancer Genome Task Team of the Global Alliance for Genomics and Health)
Title Sharing Clinical and Genomic Data on Cancer - The Need for Global Solutions
Reference

 The New England Journal of Medicine. 2017; 376(21): 2006-2009.


Author(s) Philips M., Dove E.S., Knoppers B.M.
Title Criminal Prohibition of Wrongful Re-identification: Legal Solution or Minefield for Big Data?
Reference

 Journal of Bioethical Inquiry. 2017; 14(4): 527-539.


Author(s) Rahimzadeh V., Dove E.S., Knoppers B.M.
Title The sIRB system: a single beacon of progress in the revised Common Rule?
Reference

 (2017) American Journal of Bioethics


Author(s) Rahimzadeh V., Sénécal K., Kleiderman E., Knoppers B.M.
Title Minors and incompetent adults: A tale of two populations
Reference

 Neuroethics: Anticipating the Future (New York: Oxford University Press, 2017)


Author(s) Salerno J., Knoppers B.M., Lee L., Hlaing W., Goodman K.
Title Ethics, Big Data and Computing in Epidemiology and Public Health
Reference

(2017) Annals of Epidemiology 


Author(s) Sénécal K., Thys K., Vanassche K., Vears D.F., Knoppers B.M., Borry P.
Title Reply to C Harling
Reference

 (2017) European Journal of Human Genetics


Author(s) So D., Knoppers B.M.
Title Ethics approval in applications for open-access clinical trial data: an analysis of researcher statements to clinicalstudydatarequest.com
Reference

(2017) PLOS One 


Author(s) Thorogood A., and Knoppers B.M.
Title Human Cell Atlas White Paper: Ethics, Legal, and Regulatory Principles
Reference

(Oct 2017).

https://www.humancellatlas.org/files/HCA_WhitePaper_18Oct2017.pdf

Author(s) Thorogood A., Deschênes St-Pierre C., Knoppers B.M.
Title Substitute consent to data sharing: a way forward for international dementia research?
Reference

 (2017) JLB, doi:10.1093/jlb/lsw063, 1


Author(s) Thorogood A., Knoppers B.M.
Title Can research ethics committees enable clinical trial data sharing?
Reference

(2017) Ethics, Medicine and Public Health


Author(s) Vears D.F., Sénécal K., Clarke A.J., Jackson L., Laberge A.M., Lovrecic L., Piton A., Van Gassen K.I.I. , Yntema H.G., Knoppers B.M., Borry P.
Title Points to consider for laboratories reporting results from diagnostic genomic sequencing
Reference (2017)EJHG, doi: 10.1038/s41431-017-0043-9

Author(s) Yuen R., et al. (including Knoppers B.M., Tassé A.M.)
Title Whole genome sequencing resource identifies 18 new candidate genes for autism spectrum disorder
Reference

(2017) Nature Neuroscience 


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2016

Author(s) Bledsoe M.J., Henderson M., Tassé A.M., Knoppers B.M.
Title International Biobanking Summit V: Harmonizing Privacy Laws to Enable International Biobank Research
Reference

(2016) 14:5 Biopreservation and Biobanking, 452


Author(s) Borry P., Sénécal K., Knoppers B.M.
Title Do It Yourself Newborn Screening
Reference

(2016) JAMA Pediatrics, doi:10.001/jamapediatrics.2016.0166, E1


Author(s) Bovenberg J.A., de Hoogh K., Knoppers B.M., Hveem K., Hansell A.L.
Title Don’t Take It Personal EU legal aspects of procuring and protecting Environmental Exposure Data in Population Biobanks through the use of a Geo-Information Systems Toolkit
Reference

(2016) 14:3 Biopreservation and Biobanking, 217


Author(s) Briceño Moraia L., Kaye J., Tassé A.M., Knoppers B.M., Mitchell C., Soini S., Hoppe N., Wallace S.E., Øien M.
Title A comparative analysis of the requirements for the use of data in biobanks based in Finland, Germany, the Netherlands, Norway and the United Kingdom
Reference

(2016) Medical Law International, DOI: 10.1177/0968533215571956, 1


Author(s) Charlebois K., Palmour N., Knoppers B.M.
Title The Adoption of Cloud Computing in the Field of Genomics Research: The Influence of Ethical and Legal Issues
Reference

(2016) PLoS One, doi: 10.1371/journal.pone.0164347, 1


Author(s) Dove E.S., Laurie G.T., Knoppers B.M.
Title Data Sharing and Privacy
Reference

Genomic and Personalized Medicine (Waltham, MA: Elsevier, 2017)


Author(s) Dove E.S., Thompson B., Knoppers B.M.
Title A step forward for data protection and biomedical research
Reference

(2016) 387:10026 The Lancet, 1374


Author(s) Dove E.S., Townend D., Meslin E.M., Bobrow M., Littler K., Nicoll D., de Vries J., Junker A., Garattini C., Bovenberg J., Shabani M., Lévesque E., Knoppers B.M.
Title Ethics review for international data-intensive research
Reference

(2016) 351:6280 Science, 1399


Author(s) Dyke S.O.M., Dove E.S., Knoppers B.M.
Title Sharing health-related data: a privacy test?
Reference

(2016) Genomic Medicine, doi:10.1038/npjgenmed.2016.24, 1


Author(s) Dyke S.O.M., Kirby E., Shabani M., Thorogood A., Kato K., Knoppers B.M.
Title Registered access: a 'Triple-A' approach
Reference

(2016) 24:12 European Journal of Human Genetics, 1715


Author(s) Dyke S.O.M., Philippakis A.A., Rambla De Argila J., Paltoo D.N., Luetkemeier E.S., Knoppers B.M., Brookes A.J., Spalding J.D., Thompson M., Roos M., Boycott K.M., Brudno M., Hurles M., Rehm H.L., Matern A., Fiume M., Sherry S.T.
Title Consent Codes: Upholding Standard Data Use Conditions
Reference

(2016) 12:1: e1005772.doi.10.137/journal.pgen.1005772, PLOS Genetics, 1


Author(s) Esquivel-Sada D., Hagan J., Sénécal K., Avard D., Knoppers B.M., Sinnett D.
Title Perspectives de parents concernant les découvertes fortuites en recherche pédiatrique : la voix manquante au débat?Parental Perspectives on Incidental Findings in Pediatric Research: The Missing Voice in the Debate
Reference

(2016) 4:2 Serie E : Droit, sante et societe, 15


Author(s) Fortier I., Raina P., Van den Heuvel E.R., Griffith L.E., Craig C., Saliba M., Doiron D., Stolk R.P., Knoppers B.M., Ferretti V., Granda P., Burton P.
Title Maelstrom Research guidelines for rigorous retrospective data harmonization
Reference

(2016) International Journal of Epidemiology, doi:10.1093/ije/dyw075, 1


Author(s) Green R.C., Goddard K.A.B., Jarvik G.P., Amendola L.M., Appelbaum P.S., Berg J.S., Bernhardt B.A., Biesecker L.G., Biswas S., Blout C.L., Bowling K.M., Brothers K.B., Burke W., Caga-anan C.F., Chinnaiyan A.M., Chung W.K., Clayton E.W., Cooper G.M., East K., Evans J.P., [...] Knoppers B.M., et al
Title Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine
Reference

(2016) 98:6 The American Journal of Human Genetics, 1051

Correction:

(2016) 99:1 The American Journal of Human Genetics, 246


Author(s) Hagan J., Lévesque E., Knoppers B.M.
Title Influence des facteurs organisationnels sur l'implantation d'une approche personnalisee de depistage du cancer du sein
Reference

(2016) 28:3 Sante publique, 353


Author(s) Isasi R., Kleiderman E., Knoppers B.M.
Title Editing Policy to Fit the Genome?
Reference

(2016) 351:6271 Science, 337


Author(s) Joly Y., de Vries-Seguin E., Chalmers D., Ouellette B.F.F., Yamada J., Bobrow M., Knoppers B.M.
Title Analysis of five years of controlled access and data sharing compliance at the International Cancer Genome Consortium
Reference

(2016) 48:3 Nature Genetics, 224


Author(s) Joly Y., So D., Osien G., Crimi L., Bobrow M., Chalmers D., Wallace S., Zeps N., Knoppers B.M.
Title A Decision Tool to Guide the Ethics Review of a Challenging Breed of Emerging Genomics Projects
Reference

(2016) 24:8 European Journal of Human Genetics, 1099


Author(s) Kaye J., Briceño Moraia L., Mitchell C., Bell J., Bovenberg J.A., Tassé A.M., Knoppers B.M.
Title Access Governance for Biobanks: The Case of the BioSHaRE-EU Cohorts
Reference

(2016) 14:3 Biopreservation and Biobanking, 201


Author(s) Knoppers B.M.
Title Precision medicine: a matter of regulation or collaboration?
Reference

(2106) Journal of Law and the Biosciences, doi: 10.1093/jlb/lsw049, 1


Author(s) Knoppers B.M., Nguyen M.T., Sénécal K., Tassé A.M., Zawati M.H.
Title Next-Generation Sequencing and the Return of Results
Reference

Cold Spring Harb Perspect Med


Author(s) Knoppers B.M., Sénécal K., Boisjoli J., Borry P., Cornel M.C., Fernandez C.V., Grewal J., Holm I.A., Nelson E., Pinxten W., Shabani M., Tassé A.M., Zawati M.H., Wright Clayton E, on behalf of the P3G International Paediatric Research Platform
Title Recontacting Pediatric Research Participants for Consent When They Reach the Age of Majority
Reference

(2016) 38:6 IRB: Ethics and Human Research, 1


Author(s) Phillips M., Knoppers B.M.
Title The discombobulation of de-identification
Reference

(2016) 34:11 Nature Biotechnology, 1102


Author(s) Rahimzadeh V., Dyke S.O.M., Knoppers B.M.
Title An International Framework for Data Sharing: Moving Forward with the Global Alliance for Genomics and Health
Reference

(2016) 14:3 Biopreservation and Biobanking, 256


Author(s) Rahimzadeh V., Knoppers B.M.
Title How mutually recognizable is mutual recognition? An international terminology index of research ethics review policies in the USA, Canada, UK and Australia
Reference

(2016) 13:2 Personalized Medicine, 101


Author(s) Rothstein M.A., Knoppers B.M., Harrell J.L.
Title Comparative Approaches to Biobanks and Privacy
Reference

(2016) 44:1 Journal of Law, Medicine and Ethics, 161


Author(s) Sénécal K., Thorogood A., Parry D., Joly Y., Knoppers B.M.
Title Énoncé de principes consolidé du Réseau de Médecine génétique appliquée (RMGA) du Québec
Reference

(Montréal, RMGA, 2016)


Author(s) Sénécal K., Thorogood A., Parry D., Joly, Y., Knoppers B.M.
Title The Quebec Network of Applied Genetic Medicine (RMGA). Consolidated Statement of Principles
Reference

(Montreal, RMGA, 2016)


Author(s) Sénécal K., Thys K., Vanassche K., Vears D.F., Knoppers B.M., Borry P.
Title Reply to Kranendonk
Reference

 (2016) 25; Journal of Human Genetics, doi:10.1038/ejhg.2016.160.

https://www.nature.com/ejhg/journal/v25/n2/pdf/ejhg2016160a.pdf?origin=ppub

Author(s) Sénécal K., Thys K., Vears D.F., Van Assche K., Knoppers B.M., Borry P.
Title Legal approaches regarding health-care decisions involving minors: implications for next-generation sequencing
Reference

(2016) 24:11 European Journal of Human Genetics, 1559


Author(s) Shabani M., Knoppers B.M., Borry P
Title Genomic Databases, Access Review, and Data Access Committees
Reference

Medical and Health Genomics (London: Elsevier, 2016)


Author(s) Siu L.L., Lawler M., Haussler D., Knoppers B.M., Lewin J., Vis D.J., Liao R.G., Andre F., Banks I., Barrett J.C., Caldas C., Aranha Camargo A., Fitzgerald R.C., Mao M., Mattison J.E., Pao W., Sellers W.R., Sullivan P., Teh B.T., Ward R.L., ZenKlusen J.C., Sawyers C.L., Voest E.E.
Title Facilitating a culture of responsible and effective sharing of cancer genome data
Reference

(2016) 22:5 Nature Medicine, 464


Author(s) Strom B.L., Buyse M.E., Hughes J., Knoppers B.M.
Title Data Sharing - Is the Juice Worth the Squeeze?
Reference

(2016) 375:17 The New England Journal of Medicine, 1608


Author(s) Townend D., Dove E.S., Nicol D., Bovenberg J., Knoppers B.M.
Title Streamlining ethical review of data intensive research
Reference

(2016) 354, BMJ, .i4181, 1


Author(s) Zawati M.H., Knoppers B.M.
Title Population Biobanks and the Principle of Reciprocity
Reference

Hainault P, Vaught J, Pasterk M and Zatlookal K, eds., Biobanking of Human Specimens, (New York: Springer, 2016).

http://www.springer.com/gp/book/9783319551180#aboutBook

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2015

Author(s) Bosley K.S., Botchan M., Bredenoord A.L., Carroll D., Charo R.A., Charpentier E., Cohen R., Corn J., Doudna J., Feng G., Greely H.T., Isasi R., Ji W., Kim J.-S., Knoppers B.M., Lanphier E., Li J., Lovell-Badge R., Martin G.S., Moreno J., Naldini L., Pera M., Perry A.C.F., Venter J.C, et al
Title CRISPR germline engineering - the community speaks
Reference

(2015) 33:5 Nature Biotechnology, 478


Author(s) Bovenberg J., Hansell A., de Hoogh K., Knoppers B.M.
Title Nature, nurture & exposure: Connecting biobank data with geographic data could yield public and individual health benefits, but risks to human rights need to be assessed
Reference

(2015) 16:4 EMBO Reports, 404


Author(s) Boycott K., Hartley T., Adam S., Bernier F., Chong K., Fernandez B.A., Friedman J.M., Geraghty M.T., Hume S., Knoppers B.M., Laberge A.-M., Majewski J., Mendoza-Londono R., Meyn M.S., Michaud J.L., Nelson T.N., Richer J., Sadikovic B., Skidmore D.L., Stockley T., [...] Zawati M.H., et al
Title The clinical application of genome-wide sequencing for monogenic diseases in Canada: Position Statement of the Canadian College of Medical Geneticists
Reference

(2015) 52:7 Journal of Medical Genetics, 431


Author(s) Bredenoord A.L., Mostert M., Isasi R., Knoppers B.M.
Title Data sharing in stem cell translational science: policy statement by the International Stem Cell Forum Ethics Working Party
Reference

(2015) Future Medicine, doi.10.2217/rme.15.42, 1


Author(s) Burton P.R., Murtagh M.J., Boyd A., Williams J.B., Dove E.S., Wallace S.E., Tassé A.M., Little J., Chisholm R.L., Gaye A., Hveem K., Brookes A.J., Goodwin P., Fistein J., Bobrow M., Knoppers B.M.
Title Data Save Havens in health research and healthcare
Reference

(2015) 31:20  Bioinformatics, 3241


Author(s) Dove E.S., Joly Y., Knoppers B.M.
Title International genomic cloud computing: 'mining' the terms of service
Reference

Privacy and Legal Issues in Cloud Computing (Edward Elgar Publishing Limited, 2015)


Author(s) Dove E.S., Joly Y., Tassé A.M., P3G International Steering Committee, ICGC Ethics and Policy Committee, Knoppers B.M.
Title Genomic cloud computing: legal and ethical points to consider
Reference

(2014) 23:10 European Journal of Human Genetics, 1271

http://www.nature.com/ejhg/index.html

Author(s) EL-Bikai R., Tahir M.R., Tremblay J., Joffres M., Šeda O., Šedová L., Awadalla P., Laberge C., Knoppers B.M., Dumas P, Gaudet D., Ste-Marie L.G., Hamet P.
Title Association of age-dependent height and bone mineral density decline with increased arterial stiffness and rate of fractures in hpertensive individuals
Reference

(2015) 33:4 Journal of Hypertension, 727


Author(s) Fernandez C.V., O'Connell C., Ferguson M., Orr A.C., Robitaille J.M., Knoppers B.M., McMaster C.R.
Title Stability of Attitudes to the Ethical Issues Raised by the Return of Incidental Genomic Research Findings in Children: A Follow-Up Study
Reference

(2015) 18:5 Public Health Genomics, 299


Author(s) Foulkes W., Knoppers B.M., Turnbull C.
Title Population genetic testing for cancer susceptibility: founder mutations to genomes
Reference

(2015) 13:1 Nature Reviews: Clinical Oncology, 41


Author(s) Howard H.C., Knoppers B.M., Cornel M.C., Wright Clayton E., Sénécal K., Borry P.
Title Whole-genome sequencing in newborn screening? A statement on the continued importance of targeted approaches in newborn screening programmes
Reference

(2015) 23:12 European Journal of Human Genetics, 1593


Author(s) Isasi R., Knoppers B.M.
Title Oversight of human inheritable genome modification
Reference

(2015) 33:5 Nature Biotechnology, 454


Author(s) Knoppers B.M., Chadwick R.
Title The ethics weathervane
Reference

(2015) 16:1 BMC Medical Ethics, 1


Author(s) Knoppers B.M., Zawati M.H., Sénécal K.
Title Return of genetic testing results in the era of whole-genome sequencing
Reference

(2015) 16:9 Nature Reviews Genetics, 553

http://www.nature.com/nrg/index.html

Author(s) Lévesque E., Knoppers B.M., Simard J.
Title Ethical challenges and innovations in the dissemination of genomic data: the experience of the PERSPECTIVE project
Reference

(2015) 5 Advances in Genomics and Genetics, 283


Author(s) Mascalzoni D., Dove E.S., Rubinstein Y., Dawkins H.J.S., Kole A., McCormack P., Woods S., Riess O., Schaefer F., Lochmüller H., Knoppers B.M., Hansson M.
Title International Charter of principles for sharing bio-specimens and data
Reference

(2015) 23:6 European Journal of Human Genetics, 721

Correction:

(2016) 24:7 European Journal of Human Genetics, 1096

http://www.nature.com/ejhg/index.html

Author(s) Pereira Beak C., Chargé S.B., Isasi R., Knoppers B.M.
Title Developing Educational Resources to Advance Umbilical Cord Blood Banking and Research: A Canadian Perspective
Reference

(2015) 37:5 Journal of Obstetrics and Gynaecology Canada, 443


Author(s) Rothstein M., Knoppers B.M.
Title Introduction: Harmonizing Privacy Laws to Enable International Biobank Research
Reference

(2015) 43:4 Journal of Law, Medicine and Ethics, 673


Author(s) Rousseau-Nepton I., Okubo M., Grabs R., the FORGE Canada Consortium (Knoppers B.M.), Mitchell J., Polychronakos C., Rodd C.
Title A founder AGL mutation causing glyogen storage disease type 111a in Inuit identified through whole-exome sequencing: a case series
Reference

(2015) 187:2 CMAJ, E68


Author(s) Sawyer S.L., Tian L., Kähkönen M., Schwartzentruber J., Kircher M., FORGE Canada Consortium (Knoppers B.M.), Majewski J., Dyment D.A., Innes A.M., Boycott K.M., Moreau L.A., Moilanen J.S., Greenberg R.A.
Title Biallelic Mutations in BCRA1 Cause a New Fanconi Anemia Subtype
Reference

(2015) 5:2 Cancer Discovery, 135


Author(s) Sénécal K., Rahimzadeh V., Knoppers B.M., Fernandez C.V., Avard A., Sinnett D.
Title Statement of Principles on the Return of Research Results and Incidental Findings in Paediatric Research: A Multi-site Consultative Process
Reference

(2015) 58:12 Genome, 541


Author(s) Sénécal K., Vears D.F., Bertier G., Knoppers B.M., Borry P.
Title Genome-based newborn screening: a conceptual analysis of the best interests of the child standard
Reference

(2015) Personalized Medicine, doi:10.2217/PME.15.28, 1


Author(s) Shabani M., Knoppers B.M., Borry P.
Title From the principles of genomic data sharing to the practices of data access committees
Reference

(2015) EMBO Molecular Medicine, doi 10.15252/emmm.201405002, 1


Author(s) Stein L.D., Knoppers B.M., Campbell P., Getz G., Korbel J.O.
Title Create a cloud commons
Reference

(2015) 523:7559 Nature, 149


Author(s) The 1000 Genomes Project Consortium (Knoppers B.M.) et al
Title A global reference for human genetic variation
Reference

(2015) 526"7571 Nature, 68


Author(s) Tyler-Smith C., Yang H., Landweber L.F., Dunham I, Knoppers B.M., Donnelly P., Mardis E.R., Snyder M., McVean F.
Title Where Next for Genetics and Genomics?
Reference

(2015) PLoS Biology, 13(7):e1002216. doi:10.1371/journal.pbio.1002216, 1


Author(s) Zawati M.H., Junker A., Knoppers B.M., Rahimzadeh V.
Title Streamlining review of research involving humans: Canadian models
Reference

 (2015) 52:8 J. Med. Genet., 566

http://jmg.bmj.com/content/current

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2014

Author(s) Beaulieu C.L., Majewski J., Schwartzentruber J., Samuels M.E., Fernandez B.A., Bernier F.P., Brudno M., Knoppers B.M., Marcadier J., Dyment D., Adam S., Bulman D.E., Jones S.J.M., Avard D., Nguyen M.T., Rousseau F., Marshall C., Wintle R.F., Shen Y., Scherer S.W., FORGE Canada Consortium, et al
Title FORGE Canada Consortium: Outcomes of a 2-Year National Rare-Disease Gene-Discovery Project
Reference

(2014) 94:6 The American Journal of Human Genetics, 809


Author(s) Boccia S., McKee M., Adany R., Boffetta P., Burton H., Cambon-Thomsen A., Cornel M.C., Gray M., Jani A., Knoppers B.M., Khoury M.J., Meslin E.M., Van Duijn C.M., Villari P., Zimmern R., Cesario A., Puggina A., Colotto M., Ricciardi W.
Title Beyond public health genomics: proposals from an international working group
Reference

(2014) European Journal of Public Health, doi:10.1093/eurpub/cku142, 1


Author(s) Borry P., Rusu O., Dondorp W., DeWert G., Knoppers B.M., Howard H.
Title Anonymity 2.0. Direct-to-Consumer Genetic Testing and Donor Conception
Reference

(2014) 101:3 Fertility and Sterility, 630


Author(s) Briceño Moraia L., Kaye J., Tassé A.M., Soini S., Hoppe N., Wallace S., Knoppers B.M., Øien M.
Title A comparative analysis of the requirements for the use of data in biobanks based in Finland, Germany, the Netherlands, Norway and in the United Kingdom
Reference

(2014) 14:4 Medical Law International, 187


Author(s) Brownstein C.A., Beggs A.H., Homer N., [...] Knoppers B.M., et al
Title An International Effort Towards Developing Standards for Best Practices in Analysis, Interpretation and Reporting of Clinical Genome Sequencing Results in the CLARITY Challenge
Reference

(2014) 15:3 Genome Biology, 1


Author(s) Budin-Ljøsne I., Isaeva J., Knoppers B.M., Tassé A.M., Shen H.-Y., McCarthy M.I., ENGAGE Consortium and Harris J.R.
Title Data Sharing in Large Research Consortia: Experiences and Recommendations from ENGAGE
Reference

(2014) 22:3 European Journal of Human Genetics, 317


Author(s) Caulfield T., Burningham S., Joly Y., Master Z., Shabani M., Borry P., Becker A., Burgess M., Calder K., Critchley C., Edwards K., Fullerton S.M., Gottweis H., Hyde-Lay R., Illes J., Isasi R., Kato K., Kaye J., Knoppers B.M., Lynch J., McGuire A., Meslin E. [...] Zawati, M.H.
Title A review of the Key Issues Associated with the Commercialization of Biobanks
Reference

(2014) 1:1 Journal of Law and the Biosciences, 94


Author(s) Dove E.S., Joly Y., Tassé A.M., P3G International Steering Committee, ICGC Ethics and Policy Committee, Knoppers B.M.
Title 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?
Reference

(2014) 12:6 Biopreservation and Biobanking, 363


Author(s) Dove E.S., Knoppers B.M., Zawati M.H.
Title Towards an Ethics Safe Harbor for Global Biomedical Research
Reference

(2014) 1:1 Journal of Law and the Biosciences, 3

http://jlb.oxfordjournals.org/content/1/1/3.full.pdf+html

Author(s) Dove E.S., Townend D., Knoppers B.M.
Title Data Protection and Consent to Biomedical Research: A Step Forward?
Reference

 (2014) 384 The Lancet 855.

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)61488-4/fulltext#

Author(s) Fernandez C.V., Bouffet E., Malkin D., Jabado N., O'Connell C., Avard D., Knoppers B.M., Ferguson M., Boycott K., Sorensen P.H., Orr A.C., McMaster C.
Title Attitudes of Parents to the Return of Targeted and Incidental Genomic Research Findings in Children
Reference

(2014) 16:8 Genetics in Medicine, 633


Author(s) Henderson G.E., Wolf S.M., Kuczynski K.J., Joffe S., Sharp R.R., Williams Parsons D., Knoppers B.M., Yu J.-H., Appelbaum P.S.
Title The challenge of informed consent and return of results in translational genomics: Empirical analysis and recommendations
Reference

(2014) 42:3 Journal of Law, Medicine & Ethics, 344


Author(s) Isasi R., Andrews P.W., Baltz J.M., Bredenoord A.L., Burton P., Chiu I.-M., Hull S.C., Jung J.-W., Kurtz A., Lomax G., Ludwig T., McDonald M., Morris C., Ng H.H., Rooke H., Sharma A., Stacey G.N., Williams C., Zeng F., Knoppers B.M.
Title Identifiability and Privacy in Pluripotent Stem Cell Research
Reference

(2014) 14:4 Stem Cell Cell, 427


Author(s) Joly Y., Burton H., Knoppers B.M., Ngueng Feze I., Dent T., Pashayan N., Chowdhury S., Foulkes W., Hall A., Hamet P., Kirwan N., Macdonald A., Simard J., Van Hoyweghen V.
Title Life Insurance: Genomic Stratification and Risk Classification
Reference

(2014) 22:5 European Journal of Human Genetics, 575


Author(s) Joly Y., Knoppers B.M.
Title Routledge Handbook of Medical Law and Ethics
Reference

Routledge Handbook of Medical Law and Ethics (Oxon: Routledge, 2014)


Author(s) Joly Y., Knoppers B.M.
Title Médecine personnalisée : équité et accès
Reference

(2014) 30:2 Medecine/sciences, 27


Author(s) Joly Y., Saulnier K.M., Osien G., Knoppers B.M.
Title The ethical framing of personalized medicine
Reference

(2014) 14:5 Current Opinion in Allergy and Clinical Immunology, 404


Author(s) Kleiderman E., Knoppers B.M., Fernandez C.V., Boycott K.M., et al. (including Avard D.)
Title Returning incidental findings from genetic research to children: views of parents of children affected by rare diseases
Reference

(2014) 40:10 Journal of Medical Ethics, 691-696


Author(s) Knoppers B.M.
Title International Ethics Harmonization and the Global Alliance for Genomics and Health
Reference

(2014) Genome Medicine, doi:10.11186/gm530


Author(s) Knoppers B.M.
Title Framework for responsible sharing of genomic and health-related data
Reference

(2014) 8:1 The HUGO Journal, 1


Author(s) Knoppers B.M.
Title Does policy grow on trees?
Reference

(2014)15(1):87  BMC Medical Ethics, doi:10.1186/1472-6939-15-87, 1


Author(s) Knoppers B.M.
Title Introduction: From the Right to Know to the Right Not to Know
Reference

(2014) 42:1 Journal of Law, Medicine and Ethics, 6


Author(s) Knoppers B.M., Avard D., Sénécal K., Zawati M.H., P3G International Paediatrics Platform Members
Title Return of Whole-Genome Sequencing Results in Paediatric Research: A Statement of the P3G International Paediatrics Platform
Reference

(2014) 22:1 European Journal of Human Genetics, 3


Author(s) Knoppers B.M., Harris J.R., Budin-Ljøsne I., Dove E.S.
Title A Human Rights Approach to an International Code of Conduct for Genomic and Clinical Data Sharing
Reference

(2014) 133:7 Human Genetics, 895

http://link.springer.com/article/10.1007/s00439-014-1432-6

Author(s) Knoppers B.M., Özdemir V.
Title The Concept of Humanity and Biogenetics
Reference

Humanity Across International Law and Biolaw (Cambridge: Cambridge University Press, 2014)


Author(s) Knoppers B.M., Sénécal K., Borry P., Avard D.
Title Whole Genome Sequencing in Newborn Screening Programmes?
Reference

(2014) 6:229 Science Translational Medicine, 1


Author(s) Knoppers B.M., Zawati M.H., Cohen E.
Title Special Issue - From Biobanks to the Clinic
Reference

(2014) 3:2 Applied & Translational Genomics, 21


Author(s) Kosseim P., Dove E.S., Baggaley C., Meslin E.M., Cate F.H., Kaye J., Harris J.R., Knoppers B.M.
Title Building a Data Sharing Model for Global Genomic Research
Reference

 (2014) 15:8 Genome Biology, 1

http://genomebiology.com/2014/15/8/430

Author(s) Lévesque E., Knoppers B.M.
Title Management Strategies for Ethics in International Research
Reference

(2014) 2:4 Current Genetic Medicine Reports, 255

http://link.springer.com

Author(s) Lévesque M., Kim J.R., Isasi R., Knoppers B.M., Plomer A., Joly Y.
Title Stem Cell Research Funding Policies and Dynamic Innovation: A Survey of Open Access and Commercialization Requirements
Reference

(2014) 10:4 Stem Cell Reviews and Reports, 455


Author(s) McDonell L.M., Warman Chardon J., Schwartzentruber J., Foster D., Beaulieu C.L., FORGE Canada Consortium (Knoppers B.M.), Majewski J., Bulman D.E., Boycott K.M.
Title The utility of exome sequencing for genetic diagnosis in a familial microcephaly epilepsy syndrome
Reference

(2014) 14:22 BMC Neurology, 1


Author(s) McGuire A.L., Knoppers B.M., Zawati M.H., Clayton E.W.
Title Can I be Sued for that? Liability Risk and the Disclosure of Clinically Significant Genetic Research Findings
Reference

(2014) 24:5 Genome Research, 719


Author(s) Ngueng Feze I., Prystajecky N., Cook C., Knoppers B.M., Özdemir V., Dunn G., Isaac-Renton J., Joly Y.
Title The regulation of water quality assessment biotechnologies: Is Canada ready to surf the next wave?
Reference

(2014) 26:3 Journal of Environmental Law and Practice, 201


Author(s) Ozdemir V., Knoppers B.M.
Title From Government to AG: responding to the challenges of innovation and emerging technologies
Reference

Smart Governance for Health and Well-being: The Evidence (Denmark: WHO Regional Office for Europe, 2014)


Author(s) Rahimzadeh V., Joly Y., Knoppers B.M.
Title Introduction
Reference

Routledge Handbook of Medical Law and Ethics (Oxon: Routledge, 2014)


Author(s) Strom B.L., Buyse M., Hughes J., Knoppers B.M.
Title Data Sharing, Year 1 – Access to Data from Industry-Sponsored Clinical Trials
Reference

(2014) The New England Journal of Medicine, doi: 10.1056/NEJMp1411794, 1


Author(s) Thorogood A., Joly Y., Knoppers B.M., Nilsson T., Metrakos P., Lazaris A., Salman A.
Title An Implementation Framework for the Feedback of Individual Research Results and Incidental Findings in Research
Reference

(2014) 15(1):88 BMC Medical Ethics, doi:10.1186/1472-6939-15-88, 1


Author(s) Thorogood A., Knoppers B.M.
Title The ethical and legal duties of physicians in clinical genetics and genomics
Reference

Routledge Handbook of Medical Law and Ethics (Oxon: Routledge, 2014)


Author(s) Thorogood A., Zawati M.H., Knoppers B.M.
Title Point-of-Care Genetic Tests for Infectious Disease: Legal Considerations
Reference

(2014) 12:1 Current Pharmacogenomics and Personalized Medicine, 43


Author(s) Zawati M.H., Parry D., Thorogood A., Nguyen M.T., Boycott K., Rosenblatt D., Knoppers B.M.
Title Reporting Results from Whole-Genome and Whole-Exome Sequencing in Clinical Practice: A Proposal for Canada?
Reference

(2014) 51:1 Journal of Medical Genetics, 68


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2013

Author(s) Awadalla P., Boileau C., Payette Y., Idaghdour Y., Goulet J.-P., Knoppers B.M., et al
Title Cohort Profile of the CARTaGENE Study: Quebec's Population-Based Biobank for Public Health and Personalized Genomics
Reference (2013) 42:5 International Journal of Epidemiology, 1285

Author(s) Bartlett G., Avard D., Knoppers B.M.
Title A new twist on an old problem: primary care physicians and results from direct-to-consumer genetic testing
Reference (2013) 18:8 Personalized Medicine, 827

Author(s) Black L., Avard D., Zawati M.H., Knoppers B.M., Hébert J., Sauvageau G.
Title Funding Considerations for the Disclosure of Genetic Incidental Findings in Biobank Research
Reference

(2013) 84:5 Clinical Genetics, 397


Author(s) Black L., Batist G., Avard D., Rousseau C., Diaz Z., Knoppers B.M.
Title Physician Recruitment of Patients to Non-therapeutic Oncology Clinical Trials: Ethics Revisited
Reference (2013) 4 Frontiers in Pharmacology, doi: 10.3389/fphar.2013.00025, 1

Author(s) Black L., McClellan K., Avard D., Knoppers B.M.
Title Intrafamilial Disclosure of Risk for Hereditary Breast Cancer: Points to Consider
Reference (2013) 4:2 Community Genetics, 203

Author(s) Budin-Ljøsen I., Soye K.J., Tassé A.M., Knoppers B.M., Harris J.R.
Title Genotype-driven Recruitment: A Strategy whose Time has Come?
Reference

(2013) 6:19 BMC Medical Genomics, 1


Author(s) Burke W., Matheny Antommaria A.H., Bennett R., Botkin J., Clayton E.W., Henderson G.E., Holm I.A., Jarvik G.P., Khoury M.J., Knoppers B.M., Press N.A., Ross L.F., Rothstein M.A., Saal H., Uhlmann W.R., Wilfond B., Wolf S.M., Zimmern B.
Title Recommendations for Returning Genomic Incidental Findings? We Need to Talk!
Reference (2013)Genetics in Medicine, doi: 10.1038/gim.2013.113 (advance online publication)

Author(s) Dove E.S., Avard D., Black L., Knoppers B.M.
Title Emerging Issues in Paediatric Health Research Consent Forms in Canada: Working Towards Best Practices
Reference

(2013) 14:1 BMC Medical Ethics, 1


Author(s) Dove E.S., Black L., Avard D., Knoppers B.M.
Title Charting the Privacy Landscape in Canadian Paediatric Biobanks
Reference (2013) 20 Health Law Journal, 1

Author(s) Dove E.S., Knoppers B.M., Zawati M.H.
Title An Ethics Safe Harbor for International Genomics Research?
Reference

(2013) 5:11 Genome Medicine, 99

http://genomemedicine.com/content/5/11/99/

Author(s) Fernandez C.V., Strahlendor C., Avard D., Knoppers B.M., O'Connell C., Bouffet E., Malkin D., Jabado N., Boycott K., Sorensen P.H.
Title Attitudes of Canadian Researchers Toward the Return to Participants of Incidental and Targeted Genomic Findings Obtained in a Pediatric Research Setting
Reference (2013) 15:7 Genetics Medicine, 558

Author(s) Isasi R., Dalpe G., Knoppers B.M.
Title Fostering Public Cord Blood Banking and Research in Canada
Reference (2013) 22(S1) Stem Cells and Development, 29

Author(s) Joly Y., Knoppers B.M.
Title Ethics and Genetics
Reference Brenner's Encyclopedia of Genetics (Oxford: Elsevier, 2013)

Author(s) Kirby E., Zawati M.H., Knoppers B.M.
Title Electronic Consent to Health Research in Canada
Reference

(2013) 91:2 Canadian Bar Review, 417


Author(s) Knoppers B.M.
Title Genomics: from persons to populations and back again
Reference (2013) 56:10 Genome, 537

Author(s) Knoppers B.M.
Title From Tissues to Genomes
Reference (2013) 3:8 G3 Genes, Genomes, Genetics, 1203

Author(s) Knoppers B.M.
Title Privacy, Confidentiality, and Health Research
Reference (2013) 42:1 International Journal of Epidemiology, 359

Author(s) Knoppers B.M., Chisholm R.L., Kaye J., Cox D., Thorogood A., Burton P., Brookes A.J., Fortier I., Goodwin P., Harris J.R., Hveem K., Kent A., Little J., Riegman P.H., Ripatti S., Stolk R.P.
Title Supplement – Sample Generic Access Agreement
Reference

(2013) 31:5 Nature Biotechnology, 1


Author(s) Knoppers B.M., Chisholm R.L., Kaye J., Cox D., Thorogood A., Burton P., Brookes A.J., Fortier I., Goodwin P., Harris J.R., Hveem K., Kent A., Little J., Riegman P.H.J., Ripatti S., Stolk R.P.
Title A P3G Generic Access Agreement for Population Genomic Studies
Reference (2013) 31:5 Nature Biotechnology, 384

Author(s) Knoppers B.M., Deschênes M., Zawati M.H., Tassé A.M.
Title Population Studies: Return of Research Results and Incidental Findings Policy Statement
Reference

(2013) 21:3 European Journal of Human Genetics, 245


Author(s) Knoppers B.M., Rioux A. and Zawati, M.H.
Title Pediatric Research ‘Personalized’? International Perspectives on the Return of Results
Reference

(2013)10:1 Personalized Medicine, 89


Author(s) Knoppers B.M., Thorogood A., Chadwick R.
Title The Human Genome Organisation: Towards Next-generation Ethics
Reference (2013) 5:4 Genome Medicine, 1

Author(s) Mallette A., Tassé A.M., Knoppers B.M.
Title P3G Model Framework for Biobank Governance
Reference

(2013) Public Population Project in Genomics and Society (P3G), 1


Author(s) Mascalzoni D., Knoppers B.M., Aymé S., Macilotti M., Dawkins H., Woods S., Hansson M.G.
Title Rare Diseases and Now Rare Data?
Reference (2013) 14:6 Nature Reviews. Genetics, 372

Author(s) McClellan K.A, Avard D., Simard J., Knoppers B.M.
Title Personalized Medicine and Access to Health Care: Potential for Inequitable Access?
Reference

(2013) 21:2 European Journal of Human Genetics, 143

http://www.ncbi.nlm.nih.gov/pubmed/22781088

Author(s) McClellan K.A., Kleiderman E., Black L., Bouchard K., et al. (including Knoppers B.M. and Avard D.)
Title Exploring Resources for Intrafamilial Communication of Cancer Genetic Risk: We Still Need to Talk
Reference

(2013) 21:9 European Journal of Human Genetics, 903-910


Author(s) Ozdemir V., Joly Y., Kirby E., Avard D., Knoppers B.M.
Title Beyond ELSIs - Where to From Here? From 'Regulating' to Anticipating and Shaping the Innovation Trajectory in Personalized Medicine
Reference

Pharmacogenomics: Challenges and Opportunities in Therapeutic Implementation (Amsterdam: Elsevier, 2013)

http://www.sciencedirect.com/science/book/9780123919182

Author(s) Sénécal K., Lévesque E., Fernandez C., Tassé A.M., Zawati M.H., Knoppers B.M., Avard D.
Title RMGA Statement of Principles on the Return of Research Results and Incidental Findings
Reference (Montréal, RMGA, 2013)
http://www.rmga.qc.ca/en/documents/RMGAStatement_Principles_English_May272013_000.pdf

Author(s) Sénécal K., Lévesque E., Fernandez C., Tassé A.M., Zawati M.H., Knoppers B.M., Avard D.
Title Énoncé de principes du RMGA sur la communication des résultats de recherche et des découvertes fortuites
Reference
http://www.rmga.qc.ca/fr/documents/EnonceduRMGA_versionfr_27mai2013.pdf

Author(s) So D., Joly Y., Knoppers B.M.
Title Clinical Trial Transparency and Orphan Drug Development: Recent Trends in Data Sharing by the Pharmaceutical Industry
Reference

(2014) 16:6 Public Health Genomics, 322


Author(s) van El C.G., Cornel M.C., Borry P., Hastings R.J., Fellmann F., Hodgson S.V., Howard H.C., Cambon-Thomsen A., Knoppers B.M., Meijers-Heijboer H., Scheffer H., Tranebjaerg L., Dondorp W., de Wert G.M.W.R.
Title Whole-genome sequencing in health care
Reference (2013) 21:6 European Journal of Human Genetics, 580

Author(s) Wall Warner A., Bienfait K.L., Bledsoe M., Burckart G., Flamion B., Knoppers B.M., Nelsen A.J., Rudman A., Sieffert N.J., Uyama Y.
Title Improving Clinical Trial Sampling for Future Research - An International Approach: Outcomes and Next Steps from the DIA Future Use Sampling Workshop 2011
Reference

(2013) 14:1 Pharmacogenomics, 103


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2012

Author(s) Avard D., Black L., Samuel J., Griener G., Knoppers B.M.
Title Best Practices for Research Involving Children and Adolescents: Genetic, Pharmaceutical and Longitudinal Studies
Reference Centre of Genomics and Policy (CGP), Maternal Infant Child and Youth Research Network (MICYRN), December 2012, 1

Author(s) Black L., Knoppers B.M., Avard D., Simard J.
Title Legal Liability and the Uncertain Nature of Risk Prediction: The Case of Breast Cancer Risk Prediction Models
Reference (2012) 15:6 Public Health Genomics, 327

Author(s) Budin-Ljøsne I., Harris J.R., Kaye J., Knoppers B.M., Tassé A.M., Bravo E., Cambon-Thomsen A., Eriksson M., Kyvik K.O., Litton J.-E., Perola M., Rial-Sebbag E.
Title ELSI Challenges and Strategies of National Biobanks Infrastructures
Reference

(2012) 21:2 Norwegian Journal of Epidemiology, 155

http://www.ntnu.no/ojs/index.php/norepid/article/view/1487

Author(s) Clarke L., Zheng-Bradley X., [...] & The Genomes project Consortium (Knoppers B.M.)
Title The 1000 Genomes Project: Data Management and Community Access
Reference (2012) 9:5 Nature Methods, 459

Author(s) Dandara C., Adebamowo C., de Vries J., Dove E.S., Fisher E., Gibbs R.A., Hotez P.J., Kickbusch I., Knoppers B.M., Masellis M., Oestergaard M.Z., Pang T., Rotimi C.N.
Title An Idea Whose Time Has Come? An African Foresight Observatory on Genomics Medicine and Data-Intensive Global Science
Reference

(2012) 10:1 Current Pharmacogenomics and Personalized Medicine, 7-15.

http://www.benthamdirect.org/pages/content.php?CPPM/2012/00000010/00000001/002AF.SGM

Author(s) De Wert G.M.W.R., Dondorp W.J., Knoppers B.M.
Title Preconception Care and Genetic Risk: Ethical Issues
Reference

(2012) 3:3 Journal of Community Genetics, 221

http://www.springerlink.com/content/0j308gx127p110k7/?MUD=MP

Author(s) Dove E.S., Joly Y., Knoppers B.M.
Title Power to the People: A Wiki-governance Model for Biobanks
Reference

(2012) 13:5 Genome Bioliogy: 158.

http://genomebiology.com/2012/13/5/158

Author(s) Harris J.R., Burton P., Knoppers B.M., Lindpaintner K., Bledsoe M., Brookes A.J., Budin-Ljøsne I., Chisholm R., Cox D., Deschênes M., Fortier I., Hainaut P., Hewitt R., Kaye J., Litton J.E., Metspalu A., Ollier B., Palmer L.J., Palotie A., et al.
Title Toward a Roadmap in Global Biobanking for Health
Reference

(2012) 20:11 European Journal of Human Genetics, 1105

http://www.nature.com/ejhg/journal/vaop/ncurrent/full/ejhg201296a.html

Author(s) Isasi R., Knoppers B.M., Andrews P.W., Bredenoord A., Colman A., Hin L.E., Hull S., Kim O.-J., Lomax G., Morris C., Sipp D., Stacey G., Wahlstrom J., Zeng F.
Title Disclosure and Management of Research Findings in Stem Cell Research and Banking: Policy Statement
Reference

(2012) 7:3 Regenerative Medicine, 439


Author(s) Joly Y., Allen C., Knoppers B.M.
Title Currents in Contemporary Bioethics. Open Access as Benefit Sharing? The Example of Publicly Funded Large-Scale Genomic Databases
Reference (2012) 40:1 Journal of Law Medicine and Ethics, 143

Author(s) Joly Y., Dove E.S., Kennedy K.L., Bobrow M., Ouellette B.F. Francis, Dyke S.O.M., Kato K., Knoppers B.M.
Title Open Science and Community Norms: Data Retention and Publication Moratoria Policies in Genomics Projects
Reference

Author(s) Joly Y., Dove E.S., Knoppers B.M., Bobrow M., Chalmers D.
Title Data Sharing in the Post-Genomic World: The Experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO)
Reference

(2012) 8:7 PLoS Computational Biology, e1002549.

http://www.ploscompbiol.org/article/info%3Adoi%2F10.1371%2Fjournal.pcbi.1002549

Author(s) Kaye J., Meslin E.M., Knoppers B.M., Juengst E.T., Deschênes M., Cambon-Thomsen A., Chalmers D., DeVries J., Edwards K., Hoppe N., Kent A., Adebamowo C., Marshall P., Kato K.
Title Research Priorities. ELSI 2.0 for Genomics and Society
Reference (2012) 336:6082 Science, 673
http://www.sciencemag.org/content/336/6082/673.summary

Author(s) Kleiderman E., Avard D., Black L., Diaz Z., ar al. (including Knoppers B.M.)
Title Recruiting Terminally Ill Patients into Non-Therapeutic Oncology Studies: Views of Health Professionals
Reference

(2012) 13:1 BMC Medical Ethics, 33


Author(s) Knoppers B.M.
Title Paediatric Research and the Communication of Not-So Incidental Findings
Reference

(2012) 17:4 Paediatric Child Health Journal, 190

http://www.pulsus.com/journals/abstract.jsp?origPg=abstract.jsp&sCurrPg=abstract&jnlKy=5&atlKy=10539&isuKy=1019&isArt=t&fromfold=Current%20Issue&&HCtype=Consumer

Author(s) Knoppers B.M.
Title Children First
Reference (2012) 25:4 GeneWatch, 16

Author(s) Knoppers B.M., Avard D., Sénécal K.
Title Newborn Screening Programmes: Emerging Biobanks?
Reference

(2012) 21:2 Norwegian Journal of Epidemiology, 163

http://www.cabdirect.org/abstracts/20123149095.html;jsessionid=A6C085A695ED075D439C33264F4A0B28

Author(s) Knoppers B.M., Avard D., Thorogood A.
Title Informed Consent in Genetics
Reference

(2012) John Wiley & Sons, 1

http://onlinelibrary.wiley.com/doi/10.1002/9780470015902.a0005199.pub2/full

Author(s) Knoppers B.M., Dove E.S., Litton J.E., Nietfeld J.J.
Title Questioning the Limits of Genomic Privacy
Reference (2012) 9:3 American Journal of Human Genetics, 577

Author(s) Knoppers B.M., Zawati M.H.
Title Biobanks
Reference Encyclopedia of Applied Ethics (San Diego: Academic Press, 2012)

Author(s) Knoppers B.M., Zawati M.H., Kirby E.S.
Title Sampling Populations of Humans Across the World: ELSI Issues
Reference

(2012) 13:1 The Annual Review of Genomics and Human Genetics, 395


Author(s) Murtagh M.J., Thorisson G.A., Wallace S.E., ... Knoppers B.M. et al
Title Navigating the Perfect [Data] Storm
Reference

(2012) 21:2 Norwegian Journal of Epidemiology, 203

http://www.ntnu.no/ojs/index.php/norepid/article/view/1495

Author(s) Romeo-Casabona C., Nicolas P., Knoppers B.M., Joly Y., Wallace S.E., Chalmers D., Dyke S., Kennedy K., Troncoso A., Kaan T., Rial-Sebbag E.
Title Legal Aspects of Genetic Databases for International Biomedical Research: The Example of the International Cancer Genome Consortium (ICGC)
Reference

(2012) 37 Law and the Human Genome Review, 15


Author(s) Samuël J., Knoppers B.M., Avard D.
Title Paediatric Biobanks: What Makes Them so Unique?
Reference

(2012) 48:2 Journal of Paediatrics and Child Health, E1


Author(s) The 1,000 Genomes Project Consortium (Knoppers B.M.)
Title An Integrated Map of Genetic Variation from 1,092 Human Genomes
Reference (2012) 491:7422 Nature, 56

Author(s) Thorogood A., Knoppers B.M., Dondorp W.J., De Wert G.M.W.R.
Title Whole-Genome Sequencing and the Physician
Reference

(2012) 81 Clinical Genetics, 511


Author(s) von Tigerstrom B., Nguyen M.T., Knoppers B.M.
Title Regulation of Stem Cell-Based Therapies in Canada: Current Issues and Concerns
Reference (2012) 8:3 Stem Cell Reviews and Reports, 623

Author(s) Zawati M.H., Knoppers B.M.
Title International Normative Perspectives on the Return of Individual Research Results and Incidental Findings in Genomic Biobanks
Reference

(2012) 14:4 Genetics in Medicine, 484


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2011

Author(s) Brand A., Knoppers B.M., Ambrosino E.
Title Public Health Genomics Journal: Adjusting the Agenda to Future Needs
Reference

(2011) 14:3 Public Health Genomics, 125


Author(s) Budin-Ljøsne, I., Tassé A.M., Knoppers B.M., Harris J.R.
Title Bridging Consent: From Toll Bridges to Lift Bridges?
Reference

(2011) 4:69 BMC Medical Genomics,1


Author(s) Conrad D.F., Keebler J.E., DePristo M.A., Lindsay S.J., [...] 1000 Genomes Project (Knoppers B.M.)
Title Variation in Genome-wide Mutation Rates within and Between Human Families
Reference (2011) 43:7 Nature Genetics, 712

Author(s) Dove E.S., Knoppers B.M., Joly, Y.
Title Trade-Secret Model: Legal Limitations
Reference

(2011)333:6049 Science, 1575

http://www.sciencemag.org/content/333/6049/1575.1.full

Author(s) Fortier I., Doiron D., Little J., Ferretti V., L'Heuruex F., Stolk R.P., Knoppers B.M., Hudson T.J., Burton P.R. on behalf of the International Harmonization Initiative
Title Is Rigorous Retrospective Harmonization Possible? Application of the DataSHaPER Approach Across 53 Large Studies
Reference (2011) 40:5 International Journal of Epidemiology, 1314

Author(s) Gravel S., Henn B.M., Gutenkunst R.N., Indap A.R., Marth G.T., Clark A.G., Yu F., Gibbs R.A., 1000 Genomes Project (Knoppers B.M.)
Title Demographic History and Rare Allele Sharing Among Human Populations
Reference (2011) 108:29 Proc Natl Acad Sci U S A, 11983

Author(s) Grizzle W.E., Knoppers B.M., Zeps N., Hewitt S.M., Sullivan K.
Title What Are the Most Oppressing Legal and Ethical Issues Facing Biorepositories and What are Some Strategies to Address Them?
Reference

(2011) 9:4 Biopreservation and Biobanking, 317


Author(s) Isasi R., Knoppers B.M.
Title From Banking to International Governance: Fostering Innovation in Stem Cell Research
Reference (2011) 2011 Stem Cell International, 1

Author(s) Isasi R., Knoppers B.M., Lomax G.
Title Sustained Interaction: The New Normal for Stem Cell Repositories?
Reference (2011) 6:6 Regen. Med., 783

Author(s) Joly, Y., Zepps N., Knoppers B.M.
Title Genomic Databases Access Agreements: Legal Validity and Possible Sanctions
Reference (2011)130:3 Human Genetics, 441–449

Author(s) Knoppers B.M., Dam A.
Title Return of results: towards a lexicon?
Reference (2011) 39:4 J. Law Med. Ethics, 577

Author(s) Knoppers B.M., Harris J.R., Burton P.R., Murtagh M., Cox D., Deschênes M., Fortier I., Hudson T.J., Kaye J., Lindpaintner K.
Title From Genomic Databases to Translation: A Call to Action
Reference (2011) 37:8 Journal of Medical Ethics, 515

Author(s) Knoppers B.M., Harris J.R., Tassé A.M., Budin-Ljøsne I., Kaye J., Deschênes M., Zawati M.
Title Towards a data sharing Code of Conduct for international genomic research
Reference

(2011) 3:7 Genome Medicine, 1


Author(s) Knoppers B.M., Hudson T.J.
Title The Art and Science of Biobanking
Reference (2011) 130:3 Human Genetics, 329

Author(s) Knoppers B.M., Isasi R., Benvenisty N., Kim O.J., Lomax G., Morris C., Murray TH., Lee EH., Perry M., Richardson G., Sipp D., Tanner K., Wahlström J., de Wert G., Zeng F.
Title Publishing SNP Genotypes of Human Embryonic Stem Cell Lines: Policy Statement of the International Stem Cell Forum Ethics Working Party.
Reference (2011) 7:3 Stem Cell Reviews and Reports, 482

Author(s) Knoppers B.M., Lévesque E.
Title Introduction. Return of Research Results: How Should Research Results be Handled?
Reference (2011) 39:4 Journal of Law, Medicine and Ethics, 574
http://onlinelibrary.wiley.com/doi/10.1111/j.1748-720X.2011.00623.x/pdf

Author(s) Knoppers B.M., Zawati M.H.
Title De l'éthique et des avocats: les comités d'éthique dans le milieu hospitalier
Reference

in Éthique, profession juridique et société - Collection de droit 2011-2012, volume hors série, École du Barreau (Cowansville: Éditions Yvon Blais, 2011)


Author(s) Knoppers B.M., Zawati M.H.
Title Population Biobanks and Access
Reference in S. Rodota, P. Zatti (eds.), Il Governo del Corpo: Trattato di Biodiritto, Giuffrè Editore, 1181-1194

Author(s) Kourelis M., Isasi R., Knoppers B.M.
Title La recherche sur les embryons et le droit pénal : entre prohibition et permissivité?
Reference (2011) 82:1 Revue internationale de droit penal, 65

Author(s) Lévesque E., Knoppers B.M.
Title Principes assurant la protection des enfants participant à des biobanques : du stade prénatal jusqu'aux adolescents
Reference (2011) 5:2 Revue de droit et santé de McGill, 163.
http://mjlh.mcgill.ca/pdfs/vol5-2/MJLH%20Vol%20V,%20No.%202%20-%20Levesque.pdf

Author(s) Marth G.T., Yu F., Indap A.R., Garimella K., [...] 1000 Genomes Project (Knoppers B.M.)
Title The Functional Spectrum of Low-frequency Coding Variation
Reference

(2011) 12:9 Genome Biology, 1


Author(s) Ngueng Feze I., Joly Y., Zawati M., Knoppers B.M.
Title Genomic Population Biobanks: Legal, Ethical and Social Aspects
Reference (Paris, UIA, 2011)

Author(s) Ozdemir V., Faraj S.A., Knoppers B.M.
Title Steering Vaccinomics Innovations with Anticipatory Governance and Participatory Foresight.
Reference

 (2011) 15:9 OMICS,  doi:10.1089/omi.2011.0087

http://www.liebertonline.com/doi/abs/10.1089/omi.2011.0087

Author(s) Ozdemir V., Joly Y., Knoppers B.M.
Title ACCE, Pharmacogenomics, and Stopping Clinical Trials: Time to Extend the CONSORT Statement?
Reference

 (2011) 11:3 American Journal of Bioethics 11

http://www.informaworld.com/smpp/content~content=a934769011~db=all

Author(s) Ozdemir V., Knoppers B.M.
Title Future Outlook: Emerging Innovative Approaches for Effective Integration of Medical Research in Clinical Practice
Reference

Forward Look: Implementation of Medical Research in Clinical Practice (Strasbourg: European Science Foundation, 2011) 58

http://www.esf.org/fileadmin/FlipBooks/Flip/flip_report.html#/1/

Author(s) Ozdemir V., Pang T., Knoppers B.M., Avard, D., Faraj S.A., Zawati M.H., Kolker E.
Title Vaccines of the 21st Century and Vaccinomics: Data-Enabled Science Meets Global Health to Spark Collective Action for Vaccine Innovation.
Reference

 (2011) 15:9 OMICS,  523

http://www.liebertonline.com/doi/abs/10.1089/omi.2011.03ed

Author(s) Ozdemir V., Smith C., Bongiovanni K., Cullen D., Knoppers B.M., Lowe A., Peters M., Robbins R., Stewart E., Yee G., Yu Y-K., Kolker E.
Title Policy and Data-Intensive Scientific Discovery in the Beginning of the 21st Century
Reference

(2011) 15:4 OMICS: A Journal of Integrative Biology, 221

http://www.liebertonline.com/doi/pdfplus/10.1089/omi.2011.0007

Author(s) Pathmasiri S., Deschênes M., Joly Y., Mrejen T., Hemmings F., Knoppers B.M.
Title Intellectual Property Rights in Publicly Funded Biobanks: Much Ado About Nothing?
Reference

(2011) 29:4 Nature Biotechnology, 319


Author(s) Samuël J., Knoppers B.M., Avard D.
Title Medical Research Involving Children: A Review of International Policy Statements
Reference Health Care Ethics: Core and Emerging Issues (London: SAGE, 2011)

Author(s) Tassé A.M., Knoppers B.M.
Title Governance and Use of Previously Stored Human Biological Material in the Public Health Context: Legal and Ethical Issues
Reference

(Ottawa, PHAC, 2011)


Author(s) Tassé A.M., Knoppers B.M.
Title Guidance for Biobanking: Anonymization and Disposal of Human Biological Materials from Existing Collection
Reference

(Ottawa, Health Canada, 2011)


Author(s) Vermeulen E., Schmidt M.K., Cornel M.C., Knoppers B.M., van Leeuwen F.E., Aaronson N.K.
Title Connective tissue: Cancer patients' Attitudes Towards Medical Research Using Excised (Tumour) Tissue
Reference

(2011) 6:4 BioSocieties, 466


Author(s) Wallace S.E., Knoppers B.M.
Title Harmonised consent in international research consortia: an impossible dream?
Reference

(2011) 7 Genomics, Society and Policy, 35


Author(s) Zawati M.H., Knoppers B.M., Rioux A.
Title Guidance for Biobanks: Models of Consent for Public Health
Reference

Report submitted to the Public Health Agency of Canada (PHAC), 18 March 2011


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2010

Author(s) 1000 Genomes Project Consortium (knoppers B.M.), Abecasis G.R., Altshuler D., Auton A., Brooks L.D., Durbin R.M., Gibbs R.A., Hurles M.E., McVean G.A.
Title A map of human genome variation from population-scale sequencing
Reference (2010) 467:7319 Nature, 1061

Author(s) Black L., Simard J., Knoppers B.M.
Title Genetic Testing, Physicians and the Law: Will the Tortoise Ever Catch Up with the Hare?
Reference

(2010) 16 Ann. Health L.,115


Author(s) Bombard Y., Miller F.A., Hayeems R.Z., Avard D., Knoppers B.M.
Title Reconsidering reproductive benefit through newborn screening: a systematic review of guidelines on preconception, prenatal and newborn screening
Reference

(2010) 18:7 European Journal of Human Genetics, 751


Author(s) Bordet S., Bennett J., Knoppers B.M., McNagny K.M.
Title The changing landscape of human-animal chimera research: A Canadian regulatory perspective
Reference (2010) 4 Stem Cell Research, 10
http://www.sciencedirect.com/science/journal/18735061

Author(s) Bordet S., Nguyen T.M., Knoppers B.M., Isasi R.
Title Use of Umbilical Cord Blood for Stem Cell Research
Reference

(2010) 32:1 JOGC, 58


Author(s) Borugian M.J., Robson P., Fortier I., Parker L., McLauglin J., Knoppers B.M., Bédard K., Gallagher R.P., Sinclair S., Ferretti V., Whelan H., Hoskin D., Potter J.D.
Title The Canadian Partnership for Tomorrow Project: Building a Pan-Canadian Research Platform for Disease Prevention
Reference

(2010) 182:11 CMAJ, 1197


Author(s) Burke W., Burton H., Hall A.E., Karmali M., Khoury M.J., Knoppers B.M., Meslin E.M., Stanley F., Wright C.F., Zimmern R.L.
Title Extending the reach of public health genomics: What should be the agenda for public health in an era of genome-based and "personalized" medicine?
Reference

(2010) 12:12 Genetics in Medicine, 785


Author(s) Burton P., Fortier I., Knoppers B.M.
Title The Global Emergence of Epidemiological Biobanks: Opportunities and Challenges
Reference Human Genetic Epidemiology: Building the Evidence for Using Genetic Information to Improve Health and Prevent Disease (U.S.: Oxford University Press, 2010)

Author(s) Caulfield T., Knoppers B.M.
Title Introduction: The Age of Personal Genomics?
Reference (2010) 13:5 Public Health Genomics, 320

Author(s) Caulfield T., Knoppers B.M.
Title Consent, Privacy & Research Biobanks
Reference

(2010) 1 Genome Canada, 1

http://www.genomecanada.ca/medias/pdf/en/GPS-Policy-Directions-Brief.pdf

Author(s) Fortier I., Burton P.R., Robson P.J., Ferretti V., Little J., L'Heureux F., Deschênes M., Knoppers B.M., et al.
Title Quality, quantity and harmony: The DataSHaPER approach to integrating data across bioclinical studies
Reference (2010) 39:5 International Journal of Epidemiology, 1383

Author(s) Howard H.C., Knoppers B.M., Borry P.
Title Blurring Lines. The Research Activities of Direct-to-Consumer Genetic Testing Companies Raise Questions about Consumers as Research Subjects
Reference

(2010) 11:8 EMBO reports, 579

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2920435/

Author(s) Isasi R., Knoppers B.M.
Title Beyond the Embryo: Translational, Transdisciplinary and Translational Perspectives on Stem Cell Research
Reference

(2010) 7:2 SCRIPTed, 242

http://www.law.ed.ac.uk/ahrc/script-ed/vol7-2/isasi.asp

Author(s) Joly Y., Caulfield T., Knoppers B.M., Harmsen E., Pastinen T.
Title The Commercialization of Genomic Research in Canada
Reference (2010) 6:2 Healthcare Policy, 24

Author(s) Joly Y., McClellan K.A., Knoppers B.M.
Title Personalized Vaccines and Public Health Genomics: Anticipating and Monitoring the ELSIs
Reference

(2010) 8 Current Pharmacogenomics and Personalized Medicine, 4


Author(s) Knoppers B.M.
Title Consent to 'personal' genomics and privacy. Direct-to-consumer genetic tests and population genome research challenge traditional notions of privacy and consent
Reference (2010) 11:6 EMBO reports, 416

Author(s) Knoppers B.M.
Title Des enjeux éthiques à l'évaluation éthique
Reference La malréglementation : Une éthique de la recherche est-elle possible et à quelles conditions? (Montréal: Les Presses de l'Université de Montréal, 2010)

Author(s) Knoppers B.M.
Title Return of Individual Research Results: Why the fuss?
Reference

(2010) 43:4 GRAVITAS (The Association of Faculties of Medicine of Canada), 17


Author(s) Knoppers B.M. & Isasi R.
Title Stem Cell Banking: Between Traceability and Identifiability
Reference

(2010) 2:10 Genome Medicine, 73


Author(s) Knoppers B.M., Avard D., Howard H.C.
Title Direct-to-consumer genetic testing: driving choice?
Reference

(2010) 10:8 Expert Rev. Mol. Diagn., 965

http://www.expert-reviews.com/loi/erm

Author(s) Knoppers B.M., Ho W.C.
Title Biomedical Law and Ethics - Introduction
Reference

(2010) 22 (Special Issue) Singapore Academy of Law Journal, 759


Author(s) Knoppers B.M., Isasi R., Willemse L.
Title Stem Cell Charter
Reference

(2010) 5:1 Regen. Med., 5


Author(s) Knoppers B.M., Joly Y.
Title General Problems Related to the Collection and Processing of Health Related Information for Insurance Purposes Including those which are Specific to Predictive Health Data
Reference (Council of Europe, CDBI-CO-GT4 (2010) 6REV)

Author(s) Knoppers B.M., Kirby E., Isasi R.
Title Genetics and Stem Cell Research: Models of International Policy
Reference Bioethics in Singapore: The Ethical Microcosm (Singapore: World Scientific Publishing Co. Pte. Ltd, 2010)

Author(s) Knoppers B.M., Leroux T., Doucet H., Godard B., Laberge C., Stanton-Jean M., Fortin S., Cousineau J., Monardes C., Girard N., Lévesque L., Durand C., Farmer Y., Dion-Labrie M., Bouthillier M.-E., Avard D.
Title Framing Genomics, Public Health Research and Policy: Points to Consider
Reference

(2010) 13:4 Public Health Genomics, 224


Author(s) Lévesque E., Leclerc D., Puymirat J., Knoppers B.M.
Title Developing Registries of Volunteers: Key Principles to Manage Issues Regarding Personal Information Protection
Reference

(2010) 36:11 J. Med. Ethics, 712

http://jme.bmj.com/content/early/2010/09/29/jme.2010.036715.full.pdf

Author(s) Naukkarinen J., Surakka I., Pietiläinen K.H., Rissanen A., Salomaa V., Ripatti S., Yki-Järvinen H., van Duijn C.M., Wichmann H.E., Kaprio J., Taskinen M.R., Peltonen L., ENGAGE Consortium (Knoppers B.M.)
Title Use of Genome-Wide Expression Data to Mine
Reference (2010) 6:6 PLoS Genetics, 1

Author(s) Ozdemir V., Armengaud J., Dubé L., Aziz R.K., Knoppers B.M.
Title Nutriproteomics and Proteogenomics: Cultivating Two Novel Hybrid Fields of Personalized Medicine with Added Societal Value
Reference

(2010) 8:4 Current Pharmacogenomics and Personalized Medicine, 240

http://docserver.ingentaconnect.com/deliver/connect/ben/18756921/v8n4/s1.pdf?expires=1314405786&id=64129995&titleid=99000213&accname=Guest+User&checksum=F1C35F80EBD920C502C7C3D75B6D6D59

Author(s) Ozdemir V., Knoppers B.M.
Title One Size Does Not Fit All: Toward "Upstream Ethics"?
Reference

(2010) 10:6 American Journal of Bioethics, 42

http://www.informaworld.com/smpp/content~db=all?content=10.1080/15265161.2010.482639

Author(s) Tassé A.M., Budin-Ljøsne I., Knoppers B.M., Harris J.R.
Title Retrospective access to data: The ENGAGE consent experience
Reference

(2010) 18 EJHG, 741

http://www.nature.com/ejhg/journal/v18/n7/full/ejhg201030a.html

Author(s) Tassé A.M., Letendre M., Knoppers B.M.
Title Investigación y Personas Fallecidas: Uso Secundario de la Información Médica y los Materiales Biológicos
Reference

(2010) 8:1 GenEdit 1-9

http://www.humgen.org/int/GE/es/2010-1.pdf

Author(s) Tassé A.M., Sénécal K., Samuël J., Avard D., Knoppers B.M.
Title Énoncé de principes sur l’utilisation secondaire de données et de matériel biologique recueillis dans un contexte de soins ou de recherche
Reference (Montréal, RMGA, 2010)
http://www.rmga.qc.ca/files/attachments/0000/0130/RMGA-Enonce_de_principes_sur_utilisation_secondaire_2.pdf

Author(s) Thorgeirsson T.E., Gudbjartsson D.F., [...] The ENGAGE Consortium (Knoppers B.M.), et al
Title Sequence Variants at CHRNB3-CHRNA6 and CYP2A6 Affect Smoking Behavior
Reference

(2010) 42:5 Nature Genetics, 448


Author(s) Wolfson M., Wallace S.E., Masca N., Rowe G., Sheehan N.A., Ferretti V., LaFlamme P., Tobin M.D., Macleod J., Little J., Fortier I., Knoppers B.M., Burton P.R.
Title DataSHIELD: Resolving a Conflict in Contemporary Bioscience-Performing a Pooled Analysis of Individual-Level Data Without Sharing the Data
Reference

(2010) Int. J. Epidemiol., 1372


Top Top

2009

Author(s) Avard D., Knoppers B.M.
Title Genomic Medicine: Considerations for Health Professionals and the Public
Reference (2009) 1:2 Genome Medicine, 25.1

Author(s) Avard D., Samuël J., Knoppers B.M. (eds.)
Title Paediatric Research in Canada
Reference Paediatric Research in Canada (Montreal: Les Éditions Thémis, 2009) 270pp

Author(s) Bédard K., Wallace S., Lazor S., Knoppers B.M.
Title Potential Conflicts in Governance Mechanisms used in Population Biobanks
Reference in Kaye J. & Stranger M. (eds.) Principles and Practice in Biobank Governance (United Kingdom: Ashgate, 2009)

Author(s) Birney E., Hudson T.J., [...] Knoppers B.M., et al
Title Prepublication Data Sharing
Reference

(2009) 461:7261 Nature, 168


Author(s) Bordet S., Knoppers B.M.
Title L'humain, l'humanité et les biotechnologies
Reference L'humain, l'humanité et le progrès scientifique (eds. Hervé C, Jean MS, Molinari PA, Grimaud M-A , Laforêt E) (France: Dalloz, 2009)

Author(s) Bouffard C., Viville S., Knoppers B.M.
Title Genetic diagnosis of embryos: Clear explanation, not rhetoric, is needed
Reference

Author(s) Costea I., Isasi R., Knoppers B.M., Lillicrap D.
Title Haemophilia gene therapy: the patients' perspective
Reference (2009) 15:5 Haemophilia, 1159

Author(s) Fortin S., Knoppers B.M.
Title Secondary Uses of Personal Data for Population Research
Reference (2009) 5:1 Genomics, Society and Policy, 60

Author(s) Geransar R.M., Einsiedel E.F. , Galipeau J., Isasi R. , Sheremeta L., Knoppers B.M.
Title Catalyzing Umbilical Cord Blood Research in Canada: A Survey of Current Needs and Practices of Principal Investigators
Reference (2009) 31:1 J. Obstet. Gynaecol. Can, 63

Author(s) Gold E.R., Knoppers B.M.
Title Biotechnology IP & Ethics
Reference LexisNexis Canada Inc., 2009, 305 p.

Author(s) Gurwitz D., Fortier I., Lunshof J.E., Knoppers B.M.
Title Children and population biobanks
Reference (2009) 325 Science, 818-819
http://www.sciencemag.org/cgi/content/short/325/5942/818

Author(s) Isasi R.M., Knoppers B.M.
Title Governing stem cell banks and registries: Emerging issues
Reference (2009) 3:2-3 Stem Cell Res., 96
http://www.ncbi.nlm.nih.gov/pubmed/19586808

Author(s) Isasi R.M., Knoppers B.M.
Title Towards Commonality? Policy Approaches to Human Embryonic Stem Cell Research in Europe
Reference in Plomer A. & Torremans P. (eds.) Embryonic Stem Cell Patents: European Law and Ethics (London: Oxford University Press, 2010)

Author(s) Knoppers B.M.
Title Genetics: From Fate to Fortune-Telling
Reference (Fall 2009) WOA Alumni Magazine, 15
http://issuu.com/faculty_of_arts/docs/work_20of_20arts_fall_202009_online

Author(s) Knoppers B.M.
Title Challenges to Ethics Review in Health Research
Reference

(2009) 17:2-3 Health Law Review, 47


Author(s) Knoppers B.M.
Title Genomics and Policymaking: From Static Models to Complex Systems?
Reference (2009) 125 Hum Genet, 375 

Author(s) Knoppers B.M.
Title Biotechnology & Ethics
Reference Biotechnology IP & Ethics (Canada: LexisNexis Canada Inc., 2009)

Author(s) Knoppers B.M., Abdul-Rahman (Zawati) M.H.
Title Health Privacy in Genetic Research: Populations and Persons
Reference (2009) 28:2 Politics and the Life Sciences, 99

Author(s) Knoppers B.M., Avard D.
Title 'Principled' personalized medicine?
Reference (2009) 6:6 Personalized Medicine, 663

Author(s) Knoppers B.M., Bordet S., Isasi R.
Title The Human Embryo: Ethical and Legal Aspects
Reference Human Embryogenesis: Methods and Protocols (New York: Humana Press, 2009)

Author(s) Knoppers B.M., Joly Y.
Title General Problems Related to the Collection and Processing of Health Related Information for Insurance Purposes Including those which are Specific to predictive Health Data
Reference (Council of Europe, 2009)

Author(s) Knoppers B.M., Kharaboyan L.
Title "Deconstructing" Biobank Communication of Results
Reference (2009) 6:3 SCRIPTed, 677

Author(s) Knoppers B.M., Laberge C.
Title Return of Accurate and Actionable Results: Yes
Reference (2009) 9:6-7: AJOB, 107

Author(s) Levesque E., Fraser W., Knoppers B.M.
Title Consentimiento para la Investigación: Situaciones Excepcionales
Reference (2009) 7:3 GenEdit 1-12
http://www.humgen.org/int/GE/es/2009-3.pdf

Author(s) Lévesque E., Fraser W., Knoppers B.M.
Title Le consentement à la recherche: les situations d'exception
Reference

(2009) 7:3 GenEdit 1-13

http://www.humgen.org/int/GE/fr/2009-3.pdf

Author(s) Lévesque E., Fraser W., Knoppers B.M.
Title Consent to Research: Exceptional Situations
Reference

(2009) 7:3 GenEdit 1-12

http://www.humgen.org/int/GE/en/2009-3.pdf

Author(s) Nycum G., Avard D., Knoppers B.M.
Title Factors Influencing Intrafamilial Communication of Hereditary Breast and Ovarian Cancer Genetic Information
Reference (2009) European Journal of Human Genetics, Advance online publication, 25 March 2009; doi:10.1038/ejhg.2009.33

Author(s) Nycum G., Knoppers B.M., Avard D.
Title Intra-familial Obligations to Communicate Genetic Risk Information: What Foundations? What Forms?
Reference (2009) 3 McGill Journal of Law and Health, 21

Author(s) P3G Consortium (Knoppers B.M.), Church G., Heeney C., Hawkins N., de Vries J., Boddington P., Kaye J., Bobrow M., Weir B.
Title Public Access to Genome-Wide Data: Five Views on Balancing Research with Privacy and Protection
Reference

(2009) 5:10 PLoS Genetics, 1


Author(s) Samuël J., Knoppers B.M., Avard D.
Title Research Involving Children: An Analysis of International and Canadian Norms
Reference Paediatric Research in Canada (Montreal: Les Éditions Thémis, 2009), pp. 1-32.

Author(s) Samuël J., Ries N.M., Malkin D., Knoppers B.M.
Title Biobanks and Children: Comparative International Policies
Reference Paediatric Research in Canada (Montreal: Les Éditions Thémis, 2009), pp. 103-127

Author(s) Silverstein T., Joly Y., Harmsen E., Knoppers B.M. for the GRID (Gene Regulators in Disease) Project
Title The Commercialization of Genomic Academic Research: Conflicting Interests?
Reference Biotechnology IP & Ethics (Canada: LexisNexis Canada Inc., 2009)

Author(s) Taupitz J., Bader M., Knoppers B.M., et al
Title Summary, Conclusions and Recommendations
Reference Chimbrids-Chimeras and Hybrids in Comparative European and International Research (Berlin: Springer, 2009)

Author(s) Wallace S., Lazor S., Knoppers B.M.
Title Consent and Population Genomics: The Creation of Generic Tools
Reference (2009) 31:2 IRB: Ethics & Human Research, 15

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2008

Author(s) Caulfield T., McGuire A.L., Cho M., Buchanan J.A., Burgess M.M., Danilczyk U., Diaz C.M., Fryer-Edwards K., Green S.K., Hodosh E.T., Kaye J., Kedes L., Knoppers B.M., Lemmens T., Meslin E.M., Murphy J., Nussbaum R.L., Otlowski M., Pullman D., Ray P.N., Sugarman J., Timmons M.
Title Research Ethics Recommendations for Whole-Genome Research: Consensus Statement
Reference

(2008) 6:3 PloS Biology, 0430


Author(s) Cohen C.B., Brandhorst B., Nagy A., Leader A., Dickens B., Isasi R.M., Evans D., Knoppers B.M.
Title The use of fresh embryos in stem cell research: ethical and policy issues
Reference (2008) 2:5 Cell Stem Cell, 416

Author(s) Dorval M., Bouchard K., Maunsell E., Plante M., Chiquette J., Camden S., Dugas M.J., Simard J., INHERIT BRCAs (Knoppers B.M., et al)
Title Health Behaviors and Psychological Distress in Women Initiating BRC1/2 Genetic Testing: Comparison with Control Population
Reference

(2008) 17:4 Journal of Genetic Counseling, 314


Author(s) Julie Samuël J., Ries N.M.,Malkin D., Knoppers B.M.
Title Biobanques et études longitudinales: Où sont les enfants?
Reference

(2008) 6:3 GenEdit, 1-9

http://www.humgen.org/int/GE/fr/2008-3.pdf

Author(s) Knoppers B.M.
Title Of biobanks: medical data and population genetics: whither identifiability?
Reference La protection des données médicales. Les défis du XXIe siècle/The protection of medical data. Challenges of the 21st century, L.G.D.J., France, 2008, 79-88

Author(s) Knoppers B.M. et Joly Y., dir.
Title La santé et le bien commun
Reference (Montréal: Les Éditions Thémis - Collection Droit, biotechnologie et société, 2008) 

Author(s) Knoppers B.M., Abdul-Rahman (Zawati) M.H.
Title Biobanks in the Literature
Reference in Elger B., Capron A., et al (eds), Ethical Issues in Governing Biobanks: Global Perspectives, Ch. 2 (UK: Ashgate Publishing Ltd, 2008)

Author(s) Knoppers B.M., Brand A.M.
Title From Community Genetics to Public Health Genomics - What's in a Name?
Reference (2008) 12 Public Health Genomics, 1-3

Author(s) Knoppers B.M., Joly Y.
Title La connaissance du génome : un instrument au service de l'humanité?
Reference dans B.M. Knoppers et Y. Joly, dir., La santé et le bien commun, (Montréal: Les Éditions Thémis - Collection Droit, biotechnologie et société, 2008) 249

Author(s) Knoppers B.M., Saginur M.
Title Bio-Banking
Reference in The Cambridge Textbook of Bioethics (Cambridge: Cambridge University Press, 2008)

Author(s) Lacroix M., Nycum G., Godard B., Knoppers B.M.
Title Should Physicians Warn Patients' Relatives of Genetic Risks?
Reference

(2008) 178:5 CMAJ, 593


Author(s) Nycum G., Avard D., Knoppers B.M.
Title Familial communication of genetic information: experiences and complexities
Reference

(2008) 12:2 Network News, 18-20


Author(s) Samuël J., Ries N., Malkin D., Knoppers B.M.
Title Biobancos Y Estudios Longitudinales: ¿Dónde Están Los Niños?
Reference (2008) 6:3 GenEdit, 1-10
http://www.humgen.org/int/GE/es/2008-3.pdf

Author(s) Samuël J., Ries N.M., Malkin D., Knoppers B.M.
Title Biobanks and Longitudinal Studies: Where Are the Children?
Reference

(2008) 6:3 GenEdit, 1-8

http://www.humgen.org/int/GE/en/2008-3.pdf

Author(s) Wallace S., Bédard K., Kent A. and Knoppers B.M.
Title Governance Mechanisms and Population Biobanks: Building a Framework for Trust
Reference (2008) 6:2 GenEdit, 1-11
http://www.humgen.org/int/GE/en/2008-2.pdf

Author(s) Wallace S., Bédard K., Kent A. et Knoppers B.M.
Title Les mécanismes de gouvernance et les biobanques populationnelles : Établir un cadre de confiance
Reference (2008) 6:2 GenEdit, 1-11
http://www.humgen.org/int/GE/fr/2008-2.pdf

Author(s) Wallace S., Bédard K., Kent A., Knoppers B.M.
Title Mecanismos de Gobernabiliad Y Biobancos Poblacionales: Desarrollando Un Marco de Confianza
Reference (2008) 6:2 GenEdit, 1-12
http://www.humgen.org/int/GE/es/2008-2.pdf

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2007

Author(s) Bordet S., Feldman S., Knoppers B.M.
Title Legal aspects of animal-human combinations in Canada
Reference (2007) 1:1 McGill Health Law Publication, 83
http://healthlaw.mcgill.ca/

Author(s) Bucci L.M., Knoppers B.M.
Title Toward a Canadian Policy Framework on Nanomedicine: Lessons from Reproductive Technologies
Reference

(2007) Diritto pubblico comparato ed Europeo, 2007 - IV, 1676


Author(s) Cambon-Thomsen A., Rial-Sebbag E., Knoppers B.M.
Title Trends in Ethical and Legal Frameworks for the Use of Human Biobanks
Reference

(2007) 30:2 Eur Resp J, 373


Author(s) Caulfield T., Ogbogu O., Knoppers B.M., Isasi R.M., et. al.
Title Stem Cell Research Ethics: Consensus Statement on Emerging Issues
Reference (2007) 29:10 J. Obstet. Gynaecol. Can. 2007, 843

Author(s) Day B., Langlois R., Tremblay M., Knoppers B.M.
Title Canadian Health Measures Survey: Ethical, Legal and Social Issues
Reference (2007) 18 Statistics Canada, Supplement to Health Reports, 37

Author(s) For the International Stem Cell Forum Ethics Working Party: Knoppers B.M., Revel M., Richardson G., Kure J., Lotjonen S., Isasi R., Mauron A., Wahlstrom J., Rager B., Peng P.L.H.
Title Oocyte Donation for Stem Cell Research
Reference (2007) Science 316, 368-369

Author(s) Isasi R.M., Knoppers B.M.
Title Monetary Payments for the Procurement of Oocytes for Stem Cell Research: In Search of Ethical and Political Consistency
Reference (2007) 1 Stem Cell Research, 37

Author(s) Joly Y., Wahnon F., Knoppers B.M.
Title Impact of the Commercialization of Biotechnology Research on the Communication of Research Results: North American Perspective
Reference (2007) 8:1 Harvard Health Policy Review, 71

Author(s) Kharaboyan L., Knoppers B.M., Avard D., Nisker J.
Title Understanding Umbilical Cord Blood Banking: What Women Need to Know Before Deciding
Reference (2007) 17:5 Women’s Health Issues, 277

Author(s) Knoppers B.M., Abdul-Rahman (Zawati) M., Bédard K.
Title Genomic Databases and International Collaboration
Reference (2007) 18:2 King's Law Journal, 291

Author(s) Knoppers B.M., Joly Y.
Title Our Social Genome?
Reference (2007) 25:7 Trends in Biotechnology, 284
http://www.sciencedirect.com

Author(s) Sheremeta L., Knoppers B.M.
Title Beyond the Rhetoric: Population Genetics and Benefit-Sharing
Reference

Accessing and Sharing the Benefits of the Genomics Revolution (Germany: Springer, 2007)


Author(s) Simard J., Dumont D., Moisan A.M., Gaborieau V., Vezina H., Durocher F., Chiquette J., Plante M., Avard D., Bessette P., Brousseau C., Dorval M., Godard B., Houde L., Joly Y., Lajoie M.A., Leblanc G., Lepine J., Lespernace B., et al., Knoppers B.M.
Title Evaluation of BRCA1 and BRCA2 Mutation Prevalence, Risk Prediction Models and a Multi-Step Testing Approach in French-Canadian High-Risk Breast and Ovarian Cancer Families
Reference

(2007) 44:2 J. Med. Genet., 107

http://jmg.bmjjournals.com/cgi/rapidpdf/jmg.2006.044388v1

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2006

Author(s) Avard D., Bridge P., Bucci L.M., Chiquette J., Dorval M., Durocher F., Easton D., Godard B., Goldgar D., Knoppers B.M., Laframboise R., Lesperance B., Plante M., Tavtigian S.V., Vezina H., Wilson B., Simard J., INHERIT BRCAs
Title Partnering in Oncogenetic Research - The INHERIT BRCAs Experience: Opportunities and Challenges
Reference (2006) 5:1 Familial Cancer, 3-13

Author(s) Avard D., Kharaboyan L., Knoppers B.M.
Title Newborn Screening for Sickle Cell Disease: Socio-Ethical Implications
Reference First Do No Harm: Law, Ethics and Healthcare (Aldershot:  Ashgate Publishing Limited, 2006)

Author(s) Chassigneux C., Trudel P., Knoppers B.M.
Title The Legal Framing of Computerized Processing of Health Data: A European and Canadian Perspective
Reference (2006) 4:1 GenEdit, 1-8 
http://www.humgen.org/int/GE/en/2006-1.pdf

Author(s) Chassigneux C., Trudel P., Knoppers B.M.
Title L'encadrement juridique du traitement informatisé des données relatives à la santé : perspective europeo-canadienne
Reference (2006) 4:1 GenEdit, 1-8
http://www.humgen.org/int/GE/fr/2006-1.pdf

Author(s) Godard B., Knoppers B.M.
Title Emerging Duties Re: Professional Disclosure
Reference in Sharpe N.F. and Carter R.F. (eds), Genetic Testing - Care, Consent, and Liability (Hoboken: Wiley-Liss, 2006), 409

Author(s) Grimaud M.A., Knoppers B.M.
Title Introduction générale
Reference Éthique de la recherché et santé publique (Paris: Éditions Dalloz, 2006)

Author(s) Hervé C., Knoppers B.M., Molinari P.A., Grimaud M.A.
Title Systèmes de santé et circulation de l'information : encadrement éthique et juridique
Reference (Paris: Dalloz, 2006)

Author(s) Hervé C., Knoppers B.M., Molinari P.A., Moutel G., Grimaud M.-A.
Title Éthique de la recherche et santé publique: où en est-on ?
Reference (Paris: Dalloz, 2006)

Author(s) Isasi R., Knoppers B.M.
Title Mind the Gap: Policy Approaches to Embryonic Stem Cell and Cloning Research in 50 Countries
Reference (2006) 13 European Journal of Health Law, 9

Author(s) Isasi R.M., Knoppers B.M.
Title Beyond the Permissibility of Embryonic and Stem Cell Research: Substantive Requirements and Procedural Safeguards
Reference (2006) 21: 10 Human Reproduction, 2474
http://humrep.oxfordjournals.org/cgi/content/abstract/del235v1

Author(s) Joly Y., Knoppers B.M.
Title Pharmacogenomic Data Sample Collection and Storage: Ethical issues and Policy Approaches
Reference (2006) 7:2 Pharmacogenomics, 219

Author(s) Joly Y., Sillon G., Knoppers B.M.
Title La pharmacogénomique : nouveaux médicaments, nouvelles responsabilités?
Reference 1er congrès international interdisciplinaire sur la Chaîne du Médicament, "Le médicament : conception, production et consommation"; Actes du congrès (Montréal : Groupe d'étude sur l'interdisciplinarité et les représentations sociales, 2006), 265
http://www.geirsomedicaments.uqam.ca/congres2005/ActesCongres2005.pdf

Author(s) Knoppers B.M.
Title Introduction: Of Genomics and Public Health: Building Public Goods?
Reference in Knoppers B.M. (ed.), Genomics and Public Health: Legal and Socio-Ethical Perspectives (Leiden/Boston: Brill/Martinus Nijhoff, 2006)

Author(s) Knoppers B.M.
Title Biobanks: New Challenges for Bioethics and Biolaw
Reference (2006) Iustitia, 47

Author(s) Knoppers B.M. (ed.)
Title Genomics and Public Health: Legal and Socio-Ethical Perspectives
Reference (Leiden/Boston: Martinus Nijhoff Publishers, 2006)

Author(s) Knoppers B.M., Bordet S., Isasi R.M.
Title Preimplantation Genetic Diagnosis: An Overview of Socio-Ethical and Legal Considerations
Reference (2006) 7 Annu. Rev. Genomics Hum. Genet., 201

Author(s) Knoppers B.M., Hervé C.
Title Matériel biologique et informatisation : beaucoup de bruit pour rien?/Biological Material and Electronic Data: Much Ado About Nothing?
Reference (France: Les Études Hospitalières, 2006)

Author(s) Knoppers B.M., Joly Y., Simard J., Durocher F.
Title The Emergence of an Ethical Duty to Disclose Genetic Research Results: International Perspectives
Reference (2006) 14:11 European Journal of Human Genetics, 1170 (2006) 14:12 European Journal of Human Genetics, 1322 (corrected)
http://www.nature.com/uidfinder/10.1038/sj.ejhg.5201690

Author(s) Knoppers B.M., Kent A.
Title Tool-Sharing Issues in Coherent Population-Based Research
Reference

(2006) 7:2 Nature Reviews/Genetics, 84


Author(s) Knoppers B.M., Saginur M., Cash H.
Title Ethical Issues in Secondary Uses of Human Biological Materials from Mass Disasters
Reference (2006) 34:2, Journal of Law, Medicine & Ethics, 352

Author(s) Lacroix M., Knoppers B.M.
Title La recherche en génomique : de la protection des individus à l'intérêt commun
Reference Éthique de la recherche et santé publique : où en est-on? (France: Éditions Dalloz, 2006)

Author(s) Lévesque E., Knoppers B.M., Avard D.
Title La protection de l'information génétique dans le domaine médical au Québec: principe général de confidentialité et questions soulevées par les dispositions d'exception
Reference (2005-2006) 36:1-2 Revue de droit de l'Université de Sherbrooke, 101 

Author(s) Poitras S., Petit E., Knoppers B.M., Godard B.
Title L'industrie montréalaise des biosciences : une évaluation empirique des besoins en matières réglementaire et éthique
Reference Bio-ingénierie et responsabilité sociale (Montréal : Les Éditions Thémis, 2006)

Author(s) Sallée C., Knoppers B.M.
Title Secondary Research Use of Biological Samples and Data in Quebec
Reference (2006) 85 The Canadian Bar Review, 137

Author(s) Samuël J., Alemdjrodo, R., Knoppers B.M.
Title Les droits de l'enfant et la thérapie génique : les enjeux éthiques et les particularités de l'article 21 du Code civil du Québec
Reference (2006) 66: Printemps, Revue du Barreau, 181-210
http://www.barreau.qc.ca/pdf/publications/revue/2006-tome-66.pdf

Author(s) Sheremeta L., Plant M., Knoppers B.M.
Title The Future of Cord Blood Banking in Canada
Reference (2006) 14:3 Health Law Review, 51

Author(s) The International Stem Cell Forum Ethics Working Party: Knoppers B.M., Richardson G., Lee E.H., Kure J., de Wert G., Ameisen J.C., Lötjönen L., Breen K., Isasi R., Mauron A., Murray T., Wahlström J.
Title Ethics Issues in Stem Cell Research
Reference (2006) 312:5772 Science, 366

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2005

Author(s) Cambon-Thomsen A., Sallée C., Rial-Sebbag E. and Knoppers B.M.
Title Populational Genetic Databases : Is a Specific Ethical and Legal Framework Necessary?
Reference (2005) 3:1 GenEdit, 1-13 
http://www.humgen.org/int/GE/en/2005-1.pdf

Author(s) Cambon-Thomsen A., Sallée C., Rial-Sebbag E. et Knoppers B.M.
Title Les bases de données génétiques populationnelles : un encadrement éthique et juridique spécifique nécessaire?
Reference (2005) 3:1 GenEdit, 1-13 
http://www.humgen.org/int/GE/fr/2005-1.pdf

Author(s) Cotton R., Sallée C., Knoppers B.M.
Title Locus-Specific Databases: From Ethical Principles to Practice
Reference

(2005) 26:5 Human Mutation, 484


Author(s) Finegold D.L., Bensimon C.M., Daar A.S., Eaton M.L., Godard B., Knoppers B.M., Mackie J.E., Singer P.A.
Title BioIndustry Ethics
Reference (New York: Elsevier Academy Press, 2005)

Author(s) Hervé C., Knoppers B.M., Molinari P.A., Moutel G.
Title Place de la bioéthique en recherche et dans les services cliniques
Reference (Paris: Éditions Dalloz, Collection Thèmes & commentaires, 2005)

Author(s) Knoppers B.M.
Title Of genomics and public health: Building public goods
Reference

(2005) 173:10 CMAJ, 1185


Author(s) Knoppers B.M.
Title Overview of Law and Policy Challenges
Reference

(2005) 66 Louisiana Law Review, 21


Author(s) Knoppers B.M.
Title Biobanking: international norms
Reference

(2005) 33:1 The Journal of Law, Medicine and Ethics, 7


Author(s) Knoppers B.M., Saginur M.
Title The Babel of Genetic Data Terminology
Reference (2005) 23:8 Nature Biotechnology, 925
http://www.nature.com/nbt/journal/v23/n8/pdf/nbt0805-925.pdf

Author(s) Lacroix M., Godard B., Knoppers B.M.
Title Warning Patients' Relatives of Genetic Risks: Policy Approaches
Reference (2005) 3:3 GenEdit, 1-8
http://www.humgen.org/int/GE/en/2005-3.pdf

Author(s) Lacroix M., Godard B., Knoppers B.M.
Title Le devoir de confidentialité, les risques génétiques et les intérêts de la famille : approches normatives
Reference (2005) 3:3 GenEdit, 1-8 
http://www.humgen.org/int/GE/fr/2005-3.pdf

Author(s) Malinowski M.J., Knoppers B.M., Bouchard C.
Title Introduction
Reference

(2005) 66 Louisiana Law Review, 1


Author(s) Plant M., Knoppers B.M.
Title Umbilical cord blood banking in Canada: socio-ethical and legal issues
Reference

(2005) 13 Health Law Journal, 187


Author(s) Simard .J, Joly Y., Durocher F., Knoppers B.M.
Title Les enjeux éthiques du partage des résultats de recherche: l'expérience d'INHERIT BRCAs
Reference Les enjeux éthiquesdu partage des résultats de recherche: l'expérience d'INHERIT BRCAs (Montréal: Éditions Thémis, 2005)

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2004

Author(s) Isasi R.M., Knoppers B.M., Singer P.A., Daar A.S.
Title Legal and ethical approaches to stem cell and cloning research: a comparative analysis of policies in Latin America, Asia, and Africa
Reference J Law Med Ethics. 2004 Winter;32(4):626-40

Author(s) Kharaboyan L., Avard D., Knoppers B.M.
Title Storing Newborn Blood Spots: Modern Controversies
Reference (2004) 32:4 Journal of Law, Medicine and Ethics, 741

Author(s) Knoppers B.M., Godard B., Joly Y.
Title A Comparative International Overview
Reference Genetics and Life Insurance: Medical Underwriting and Social Policy (Cumberland: The MIT Press, 2004)

Author(s) Knoppers B.M., Isasi R.
Title Regulatory approaches to reproductive genetic testing
Reference (2004) 19:12 Human Reproduction, 2695

Author(s) Knoppers B.M., Joly Y.
Title Physicians, Genetics and Life Insurance
Reference (2004) 170:5 CMAJ, 1421

Author(s) Knoppers B.M., Scriver C.
Title Genomics, Health and Society: Emerging Issues for Public Policy
Reference (Alberta: Policy Research Initiative, 2004)

Author(s) Kosseim P., Letendre M., Knoppers B.M.
Title La protection de l'information génétique : une comparaison des approches normatives
Reference (2004) 2:1 GenEdit
http://www.humgen.org/int/GE/fr/2004-1.pdf

Author(s) Kosseim P., Letendre M., Knoppers B.M.
Title Protecting Genetic Information: A Comparison of Normative Approaches
Reference (2004) 2:1 GenEdit, 1-8 
http://www.humgen.org/int/GE/en/2004-1.pdf

Author(s) Lemmens T., Joly Y., Knoppers B.M.
Title Génétique et assurance vie : analyse comparative
Reference (2004) 2:2 GenEdit, 1-13
http://www.humgen.org/int/GE/fr/2004-2.pdf

Author(s) Lemmens T., Joly Y., Knoppers B.M.
Title Genetics and Life Insurance : A Comparative Analysis
Reference (2004) 2:2 GenEdit, 1-15
http://www.humgen.org/int/GE/en/2004-2.pdf

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2003

Author(s) Knoppers B.M. (editor)
Title Populations and Genetics: Legal and Socio-Ethical Perspectives
Reference

Author(s) Sheremeta L, Knoppers B.M.
Title Beyond the Rhetoric: Population Genetics and Benefit-Sharing
Reference (2003) 11 Health Law J, 89

Author(s) Wertz D.C., Régnier M., Knoppers B.M.
Title Stem cells in a pluralistic society: consequences of proposed legislation
Reference (2003) 1:1 GenEdit, 1-3 
http://www.humgen.org/int/GE/en/2003-1.pdf

Author(s) Wertz D.C., Régnier M.-H., Knoppers B.M.
Title La recherche sur les cellules souches dans une société pluraliste : Les conséquences du projet de loi canadien
Reference (2003) 1:1 GenEdit, 1-4 
http://www.humgen.org/int/GE/fr/2003-1.pdf

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2002

Author(s) Caufield T.A., Knoppers B.M.,Gold E.R., Sheremeta L.E., Bridge P.J.
Title Genetic Technologies, Health Care Policy and the Patent Bargain
Reference (2002) 63:1 Clinical Genetics, 15

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2001

Author(s) Deschênes M., Cardinal G., Knoppers B.M., Glass KC
Title Human Genetic Research, DNA Banking and Consent: A Question of 'Form'?
Reference (2001) 59:4 Clinical Genetics, 221

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1999

Author(s) Knoppers B.M.
Title Biotechnology and public policy
Reference (2000) 45:2 McGill Law J, 559

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1997

Author(s) Knoppers B.M., Grimaud M.-A., Busque L., Desmarais D.
Title L'apport des technologies de l'ADN en droit familial
Reference (1997) Congrès annuel du Barreau du Québec, 329

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