P3G2 is:

A not-for-profit Corporation dedicated to developing and supporting policy, ethical and governance frameworks of biobanks, genomic research databases and other similar health and social research infrastructures so as to optimize cross-border access and use.

Charter of Fundamental Principles

PROMOTION OF THE COMMON GOOD

P3G2 will optimize the benefits of collaborative research for the benefit of all.

RESPONSIBILITY

Protection of the interests of all affected stakeholders including families, groups, populations, researchers and research sponsors is the highest priority. Every effort will be made to respond to the concerns of stakeholders in a timely and appropriate manner.

MUTUAL RESPECT

The development and sustainability of P3G2 is based on responsibility, collaboration, co-operation, trust and mutual respect for others, which includes recognition of cultural diversity and the scientific specificity of the projects involved.

ACCOUNTABILITY

All standards, processes and procedures will be transparent and clear, developed on the basis of consensus, and aim to create best practice in the networking of population genomics resources.

PROPORTIONALITY

All research materials (such as data and samples) must be protected to the highest standards of privacy and security, while at the same time allowing and promoting the free exchange of ideas, datasharing and openness for the benefit of all.

Adopted by P3G2 Board of Directors: March 23, 2007

History

Over the past ten years, the Public Population Project in Genomics and Society (“P3G”) has grown as a consortium. We have expanded our range of services and resources to adapt to the ever-evolving needs of the research community. From the outset—when P3G first tackled the building of biobanks as resources as well as data cataloguing and harmonization for data integration—to our new mission and vision, we have continually developed the tools for the conceptualization and design of population biobanks from their inception to their use to their closure. In so doing, P3G has become key in fostering research infrastructures to facilitate transition to the clinic. The consortium has become a crucial stakeholder in the international scientific, ethical, legal and social research communities.

Phase I (2004–2012): Fostering Interoperability of Large Population Cohorts

One of P3G’s first major achievements was the creation of the Observatory, which comprised a wide range of study descriptions and provided access to both standard and detailed information on population projects in genomics, facilitated by the selection of projects by specific criteria.

P3G then sought to harmonize such variables by developing tools that would ease the integration of data across biological studies. P3G became a much-sought-after resource for establishing ground rules and policies for the worldwide biobanking community, enabling P3G members to keep abreast of new developments. P3G subsequently engaged in the conceptualization and publication of statements. On the international scene, P3G quickly established itself as a major player able to address harmonization issues and needs.

Phase II (2012–): Promoting Access and use of Research and Clinical Databases

P3G prepared Phase II in 2012 and sought to address the needs arising from the usage of and access to Biobanks. The consortium changed its name to “Public Population Project in Genomics and Society” and broadened its mission to include social science databases, in parallel with incorporation into societal health systems and the creation of diverse research programs with distinct platforms, as well as a new suite of tools.

P3G supported activities revolving around the implementation of knowledge through support for innovation and knowledge development, valourization and implementation. The International Policy interoperability and data Access Clearinghouse (IPAC) was launched in 2013 to provide expertise services for ELSI screening and data access compliance. In addition, P3G embarked on collaborations with a wider range of projects, including the Global Alliance for Genomics and Health and CanSHARE.

As P3G endeavours to lead, catalyze, and coordinate international policy efforts and expertise, in 2017 it changed its name to Policy Partnerships Project for Genomic Governance (P3G2), in order to better reflect its evolving mission to serve the community.

For more information on the history of P3G2, see: Ouellette S, Tassé A.M. P(3)G – 10 years of toolbuilding: From the population biobank to the clinic. Appl Transl Genom. 2014;3(2):36-40.

Corporate

Board of Directors

  • Chair: Bartha Maria Knoppers (Canada)
  • Vice-Chair: Jennifer Harris (Norway)
  • Treasurer: Gert-Jan B. van Ommen (Netherlands)
  • Director: Jantina De Vries (South Africa)
  • Director: Martin Godbout (Canada)
  • Director: Claude Laberge (Canada)
  • Director: Klaus Lindpaintner (Austria)
  • Director: Andres Metspalu (Estonia)
  • Director: Geraldo Jimenez-Sanchez (Mexico)

P3G2 Publications

This page provides a list of P3G2 papers, reports and book chapters that have already been published.

2016

  • Anand SS, Tu JV, Awadalla P, Black S, Boileau C, Busseuil D & Jacquemont S (2016). Rationale, design, and methods for Canadian alliance for healthy hearts and minds cohort study (CAHHM) – a Pan Canadian cohort study. BMC Public Health 16(1), 650.
  • Bledsoe MJ, Henderson M, Tassé AM & Knoppers BM (2016). International Biobanking Summit V: Harmonizing Privacy Laws to Enable International Biobank Research. Biopreservation and Biobanking 14(5), 452.
  • Briceño Moraia L, Kaye J, et al. (including Tassé AM, Knoppers BM & Wallace SE) (2016). A comparative analysis of the requirements for the use of data in biobanks based in Finland, Germany, the Netherlands, Norway and the United Kingdom. Medical Law International 14(4), 187.
  • Cai Y, Zijlema WL, Doiron D, Blangiardo M, Burton PR, Fortier I, Gaye A, Gulliver J, de Hoogh K, Hveem K, Mbatchou S, Morley DW, Stolk RP, Elliott P, Hansell AL & Hodgson S (2016). Ambient air pollution, traffic noise and adult prevalent asthma: a BioSHaRE approach. European Respiratory Journal ERJ-02127. doi: 10.1183/13993003.02127-2015
  • Chalmers D, Nicol D, Kaye J, Bell J, Campbell AV, Ho CW & Molnár-Gábor F (2016). Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era. BMC Medical Ethics 17(1), 39.
  • Dalpé G, Kirby E, Ngueng Feze I, Tassé A-M, Knoppers BM, Hamet P, Tremblay J, Phillips MS, Joly Y (2016). The Gatekeeping Function in Personalized Medicine Initiatives. Current Pharmacogenomics and Personalized Medicine 14(1), 36.
  • Dyke SOM, Saulnier KM, Pastinen T, Bourque G & Joly Y (2016). Evolving data access policy: The Canadian context. FACETS 1(1), 138.
  • Dyke SOM, Dove ES & Knoppers BM (2016). Sharing health-related data: a privacy test? Genomic Medicine, doi:10.1038/npjgenmed.2016.24.
  • Dyke SOM, Kirby E, Shabani M, Thorogood A, Kato K, Knoppers BM (2016). Registered Access: A “Triple-A” Approach. European Journal of Human Genetics. doi:10.1038/ejhg.2016.115: 1.
  • Fortier I, Raina P, Van den Heuvel ER, Griffith LE, Craig C, Saliba M, Doiron D, Stolk RP, Knoppers BM, Ferretti V, Granda P & Burton P (2016). Maelstrom Research guidelines for rigorous retrospective data harmonization. International Journal of Epidemiology, doi:10.1093/ije/dyw075
  • Griffith L, van den Heuvel E, Raina P, Fortier I, Sohel N, Hofer S, Payette H, Wolfson C, Belleville S, Kenny M & Doiron D (2016). Comparison of standardization methods for the harmonization of phenotype data: an application to cognitive measures. American Journal of Epidemiology 184(10), 770.
  • Joly Y, de Vries-Seguin E, Chalmers D, Ouellette BFF, Yamada J, Bobrow M & Knoppers BM (2016). Analysis of five years of controlled access and data sharing compliance at the International Cancer Genome Consortium. Nature Genetics 48(3), 224.
  • Joly Y, Dyke SO, Knoppers BM, & Pastinen T (2016). Are Data Sharing and Privacy Protection Mutually Exclusive? Cell 167(5), 1150.
  • Joly Y, So D, Saulnier K & Dyke SO (2016). Epigenetics ELSI: Darker Than You Think?. Trends in Genetics, 32(10), 591.
  • Kaye J, Briceño Moraia L, Mitchell C, Bell J, Bovenberg JA, Tassé AM & Knoppers BM (2016). Access Governance for Biobanks: The Case of the BioSHaRE-EU Cohorts. Biopreservation and Biobanking 14(3), 201.
  • Knoppers BM, Sénécal K, Boisjoli J, Borry P, Cornel MC, Fernandez CV, Grewal J, Holm IA, Nelson E, Pinxten W, Shabani M, Tassé A-M, Zawati MH, Clayton EW on behalf of the P3G International Paediatric Research Platform (2016). Recontacting Pediatric Research Participants for Consent When They Reach the Age of Majority. IRB: Ethics & Human Research 38(6), 1 .
  • Knoppers BM, Nguyen MT, Sénécal K, Tassé AM, Zawati M (2016). Next-Generation Sequencing and the Return of Results. Cold Spring Harb Perspect Med. 6:a026724.
  • Morrison M, Dickenson D, & Lee SSJ (2016). Introduction to the article collection ‘Translation in healthcare: ethical, legal, and social implications’. BMC Medical Ethics 17(1), 74.
  • Pang C, van Enckevort D, de Haan M, Kelpin F, Jetten J, Hendriksen D, de Boer T, Charbon B, Winder E, van der Velde KJ, Doiron D, Fortier I, Hillege H & Swertz MA (2016). MOLGENIS/connect: a system for semi-automatic integration of heterogeneous phenotype data with applications in biobanks. Bioinformatics 32(14), 2176.
  • Rahimzadeh V, Dyke SOM & Knoppers BM (2016). An International Framework for Data Sharing: Moving Forward with the Global Alliance for Genomics and Health. Biopreservation and Biobanking 14(3), 256.
  • Shabani, M, Thorogood A & Borry, P (2016). Who should have access to genomic data and how should they be held accountable? Perspectives of Data Access Committee members and experts. European Journal of Human Genetics 24, 1671.
  • Rothstein MA, Knoppers BM, Harrell HL (2016). Comparative Approaches to Biobanks and Privacy. Journal of Law, Medicine & Ethics 44(1), 161.
  • Siu LL, Lawler M, Haussler D, Knoppers BM, Lewin J, Vis DJ & Caldas C (2016). Facilitating a culture of responsible and effective sharing of cancer genome data. Nature Medicine 22(5), 464.
  • Strom BL, Buyse ME, Hughes J & Knoppers BM 92016). Data Sharing - Is the Juice Worth the Squeeze? The New England Journal of Medicine 375(17), 1608.
  • Stunnenberg HG, Hirst M & International Human Epigenome Consortium (2016). The International Human Epigenome Consortium: A Blueprint for Scientific Collaboration and Discovery. Cell 167(5), 1145.
  • Tassé AM, Bledsoe M, Giepman L, Rahimzadeh V (2016). Guest Editorial - Legal and Ethical Implications of Data Sharing in International Biobanking Research: Towards a Global Response. Biopreservation and Biobanking 14(3), 1.
  • Tassé AM (2016). A Comparative Analysis of the Legal and Bioethical Frameworks Governing the Secondary Use of Data for Research Purposes. Biopreservation and Biobanking Special 14(3), 207.
  • Tassé AM, Kirby E, Fortier I (2016). Developing an ethical and legal interoperability assessment filter for retrospective studies. Biopreservation and Biobanking 14(3), 249.
  • Thorogood A, Cook-Deegan R & Knoppers BM (2016). Public variant databases: liability? Genetics in Medicine, doi:10.1038/gim.2016.189.
  • Zijlema W, Cai Y, Doiron D, Mbatchou S, Fortier I, Gulliver J & Key T (2016). Road traffic noise, blood pressure and heart rate: Pooled analyses of harmonized data from 88,336 participants. Environmental Research 151, 804.

2015

  • Dove, E., Joly, Y., Tassé, A.M., Public Population Project in Genomics and Society (P3G) International Steering Committee, International Cancer Genome Consortium (ICGC) Ethics and Policy Committee and Knoppers, B.M., Genomic cloud computing: legal and ethical points to consider, European Journal of Human Genetics (2015) 23, 1271–1278
  • Burton PR, Murtagh MJ, Boyd A, Williams JB, Dove ES, Wallace SE, Tassé AM, […] Knoppers BM. Data Safe Havens in health research and healthcare. Bioinformatics. 2015; 31(20): 3241-3248
  • Howard HC, Knoppers BM, Cornel MC, Clayton EW, Sénécal K and Borry B, endorsed by the European Society of Human Genetics; the P3G International Paediatric Platform; the Human Genome Organisation; and the PHG Foundation. Whole-genome sequencing in newborn screening? A statement on the continued importance of targeted approaches in newborn screening programmes, European Journal of Human Genetics2015; 23(12):1593-600. doi: 10.1038/ejhg.2014.289
  • Sariyar M, Schluender I, Smee C, Suhr S. Sharing and Reuse of Sensitive Data and Samples: Supporting Researchers in Identifying Ethical and Legal Requirements. Biopreservation and Biobanking. 2015;13(4):263-270. doi:10.1089/bio.2015.0014
  • Sénécal K, Rahimzadeh V, Knoppers BM, Fernandez CV, Avard D, Sinnett D Statement of principles on the return of research results and incidental findings in paediatric research: a multi-site consultative process. Genome. 2015; 58: 541–548. dx.doi.org/10.1139/gen-2015-0092
  • Shabani M, Knoppers BM, Borry P. From the principles of genomic data sharing to the practices of data access committees. EMBO Molecular Medicine. 2015; doi 10.15252/emmm.201405002, 1-3

2014

  • Knoppers B.M., Harris J.R., Budin-Ljøsne I., Dove E.S. A Human Rights Approach to an International Code of Conduct for Genomic and Clinical Data Sharing, Human Genetics (2014), 133(7): 895.
  • Knoppers B.M. International Ethics Harmonization and the Global Alliance for Genomics and Health, Genome Medicine(2014), doi:10.11186/gm530.
  • Kosseim P., Dove E.S., Baggaley C., Meslin E.M., Cate F.H., Kaye J., Harris J.R., Knoppers B.M. Building a Data Sharing Model for Global Genomic Research Genome Biology (2014) 15(8): 1.
  • Ouellette, S., Tassé, A.M. P3G – 10 Years of Toolbuilding: From the Biobank to the Clinic, Applied & Translational Genomics (2014); doi:10.1016/j.atg.2014.04.004
  • Vasiliki Rahimzadeh, Anne Marie Tassé, Sylvie Ouellette, Bartha Maria Knoppers, Isabel Fortier, “P3G: Towards an International Policy Platform for Population Genomics”, Book chapter for Biobanking of Human Biospecimens, Springer Publications, ed. Pierre Hainaut, Jim Vaught, Markus Pasterk, and Kurt Zatloukal (2014)
  • Sijtsma, A., Smidt, N., van den Heuvel, E.R., Members of the Steering Committee, Burton, P., Fortier, I., Stolk, R.P., Tassé, A.M., Knoppers, B.M. Methods and tools for standardization and harmonization of individual participant data meta-analysis: the BioSHaRE initiative, Journal of the American Medical Association (2014)

2013

  • 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., P3G International Steering Committee. A P3G generic access agreement for population genomic studies. Nat Biotechnol. (2013), 5:384–385.
  • Knoppers B.M., Avard D., Sénécal K., Zawati M.H. along with the along with the P3G International Paediatrics Platform members. Return of whole-genome sequencing in paediatric research: a statement of the P3G International Paediatrics Platform. European Journal of Human Genetics (2013), 22: 3-5
  • Knoppers, B.M., Deschênes, M., Zawati, M.H., Tassé, A.M. Population studies: return of research results and incidental findings policy statement. European Journal of Human Genetics (2013), 21: 245-247.

2012

  • Dove, E.S., Joly, Y., Knoppers, B.M. Power to the people: a wiki-governance model for biobanks. Genome Biology (2012), 13: 158.
  • 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. Toward a Roadmap in Global Biobanking for Health. European Journal of Human Genetics (2012), 20(11): 1105.
  • Susan Wallace and Bartha M. Knoppers. “The Role of P3G in Encouraging Public Trust in Biobanks”, in Trust in Biobanking (Berlin: Springer-Verlag, 2012)
  • Zielhuis, G.A. Biobanking for epidemiology. Public Health (2012), 126(3): 214-216.

2011

  • Knoppers B.M., Harris J.R., Tassé A.M., Budin-Ljøsne I., Kaye J., Deschênes M., Zawati M. Towards a data sharing Code of Conduct for international genomic research. Genome Medicine (2011), 3:7.
  • Fortier I, Doiron D, Burton P, Raina P. "Invited Commentary: Consolidating Data Harmonization-How to Obtain Quality and Applicability?" American Journal of Epidemiology (2011) 174(3): 261-264.

2010

  • Wolfson M, Wallace SE, Masca N, Rowe G, Sheehan NA, Ferretti V, LaFlamme P, Tobin MD, Macleod J, Little J, Fortier I, Knoppers BM, Burton PR. DataSHIELD: resolving a conflict in contemporary bioscience--performing a pooled analysis of individual-level data without sharing the data. Int J Epidemiol. (2010) Oct; 39(5):1372-82. Epub 2010 Jul 14. [PMID: 20630989]
  • Fortier I, Burton PR, Robson PJ, Ferretti V, Little J, L'heureux F, Deschênes M, Knoppers BM, Doiron D, Keers JC, Linksted P, Harris JR, Lachance G, Boileau C, Pedersen NL, Hamilton CM, Hveem K, Borugian MJ, Gallagher RP, McLaughlin J, Parker L, Potter JD, Gallacher J, Kaaks R, Liu B, Sprosen T, Vilain A, Atkinson SA, Rengifo A, Morton R, Metspalu A, Wichmann HE, Tremblay M, Chisholm RL, Garcia-Montero A, Hillege H, Litton JE, Palmer LJ, Perola M, Wolffenbuttel BH, Peltonen L, Hudson TJ. Quality, quantity and harmony: the DataSHaPER approach to integrating data across bioclinical studies. Int J Epidemiol. (2010) Sep 2, Epub ahead of print. [PMID: 20813861]

2009

  • Gurwitz D, Fortier I, Lunshof J, Knoppers BM. Research ethics. Children and Population Biobanks. Science (2009) Aug 14;325(5942):818-9. [PMID: 19679798]
  • Khoury M, Bertram L, Boffetta P, Butterworth AS, Chanock SJ, Dolan SM, Fortier I, Garcia-Closas M, Gwinn M, Higgins JPT, Janssens CJW, Ostell J, Owen RP, Pagon RA, Rebbeck TR, Rothman N, Bernstein JL, Burton PR, Campbell H, Chockalingam A, Furberg H, Little J, O'Brien TR, Seminara D, Vineis P, Winn DM, Yu W, Ioannidis JPA. Genome Wide Association Studies, Field Synopses and the Development of the Knowledge Base on Genetic Variation and Human Diseases. Am J Epidemiol. (2009) Aug 1;170(3):269-79. Epub 2009 Jun 4. [PMID: 19498075]
  • Burton PR, Hansell AL, Fortier I, Manolio TA, Khoury MJ, Little J, Elliot P. Size matters: just how big is BIG?: Quantifying realistic sample size requirements for human genome epidemiology. Int J Epidemiol. (2009) Feb;38(1):263-73. Epub 2008 Aug 1. [PMID : 18676414]
  • Little J, Higgins JP, Ioannidis JP, Moher D, Gagnon F, von Elm E, Khoury MJ, Cohen B, Davey-Smith G, Grimshaw J, Scheet P, Gwinn M, Williamson RE, Zou GY, Hutchings K, Johnson CY, Tait V, Wiens M, Golding J, van Duijn C, McLaughlin J, Paterson A, Wells G, Fortier I, Freedman M, Zecevic M, King R, Infante-Rivard C, Stewart A, Birkett N. STrengthening the REporting of Genetic Association Studies (STREGA)- An Extension of the STROBE Statement. Ann Intern Med. (2009) Feb 3;150(3):206-15. [PMID: 19189911]. Eur J Clin Invest. (2009) Apr;39(4):247-66. [PMID: 19297801]. Eur J Epidemiol. (2009) ;24(1):37-55. Epub 2009 Feb 3. [PMID: 19189221]. Genet Epidemiol. 2009 Mar 10. [Epub ahead of print] [PMID: 19278015]. Hum Genet. 2009 Mar;125(2):131-51. Epub 2009 Feb 1. [PMID: 19184668]. J Clin Epidemiol. 2009 Jun;62(6):597-608.e4. Epub 2009 Feb 12. [PMID: 19217256]. PLoS Med. 2009 Feb 3;6(2):e22. [PMID: 19192942]
  • Palmer TM, Thompson JR, Tobin MD, Sheehan NA, Burton PR. Adjusting for bias and unmeasured confounding in Mendelian randomization studies with binary responses., Int J Epidemiol. (2008) Oct;37(5):1161-8. Epub 2008 May 7. [PMID: 18463132]

2008

  • Sheehan NA, Didelez V, Burton PR, Tobin MD. Mendelian randomisation and causal inference in observational epidemiology. PLoS Med. (2008) Aug 26;5(8):e177. [PMID: 18752343]
  • Knoppers BM, Abdul-Rahman MH, Chapter 2: Biobanks in the Literature, Elger B, Biller-Andorno N, Mauron A, and Capron AM, editors. Ethical Issues in Governing Biobanks. Ashgate Publishing (2008)
  • Knoppers BM, Fortier I, Legault D, Burton P, The Public Population Project in Genomics (P3G): a proof of concept? European journal of human genetics (2008) Jun;16(6):664-5. Epub 2008 Apr 2. [PMID: 18382478]
  • Wallace S, Bédard K, Knoppers BM, Building a model framework for the governance of biobanks, 2008, Ethics and Policymaking Core, Centre de recherche en droit public (CRDP), Université de Montréal.

2007

  • International Working Group (IWG) Ethics Governance and Public Participation, P3G Charter of Fundamental Principles, March 23, 2007 [PMID none]

Core Team

Anne-Marie Tassé

Executive Director
+1-514-398-1618
atasse@p3g.org

Anne-Marie Tassé (LL.B., LL.M., M.A., LL.D.) is a lawyer specialized in health law and bioethics. She holds a Doctorate in Law (Université de Montréal), Master’s degrees in Health Law (Université de Sherbrooke), and in Bioethics (Université de Montréal), and a Certificate in Health and Social Services Management (Université du Québec).  Her work looks primarily at interactions between law and ethics, in the areas of international biomedical and genetic research.

Charles Hart Rivard

Operations Director
+1-514-398-1626
crivard@p3g.org

Charles Hart Rivard is a professional accountant (CPA).  He started at P3G in January 2009 as an accountant for the organization. In 2012, P3G went through a restructuring phase, and Charles was promoted to Operations Director, a position that he still holds. In addition to working for P3G, Charles also works as a Financial Analyst for the CARTaGENE project.

Emily Kirby

IPAC Coordinator
+1-514-398-1648
ekirby@p3g.org

Emily is a lawyer and IPAC Coordinator at the Policy Partnerships Project for Genomic Governance (P3G2). As IPAC Coordinator, she assists in the coordination and development of ethical and legal documents and tools used to facilitate policy interoperability and data access authorization in the context of international genomic research. She has degree in biology (B.Sc. McGill University) and a Master’s in Environmental Project Management (M. Env., Université de Sherbrooke). After completing her Civil Law degree (LL. B.) at Université de Montréal, she articled at a Canadian national law firm, specializing in business law, and worked as a research lawyer at the Centre of Genomics and Policy at McGill University. She has been a member of the Québec Bar since 2011.

Isabel Garriga

Archivist
+1-514-398-8291
igarriga@p3g.org

Isabel is the assistant to the Data Access Officer of the International Cancer Genome Consortium (ICGC). She processes data access requests and takes part in weekly Data Access Committee meetings wherein research projects are evaluated for their conformity with the goals and policies of ICGC. Isabel completed a Bachelor’s degree in Linguistics and French at the University of Toronto and is currently completing a Master’s degree in French-to-English Translation part-time at Concordia University.

Sylvie Ouellette

Communication Officer
+1-514-398-1648
souellette@p3g.org

Sylvie holds a B.A. in Journalism and a B.Sc. in Molecular and Cell Biology, both from Concordia University in Montreal. She combines the two in her work as communication officer at P3G, where she oversees the production of internal and external documents such as annual reports and newsletters, in addition to currently pursuing M.Sc. studies in chemistry/biochemistry at Concordia.

P3G2 relies on in-house expertise, as well as collaboration with experts from the Centre of Genomics and Policy (McGill University).

  • Anand SS, Tu JV, Awadalla P, Black S, Boileau C, Busseuil D & Jacquemont S (2016). Rationale, design, and methods for Canadian alliance for healthy hearts and minds cohort study (CAHHM) – a Pan Canadian cohort study. BMC Public Health 16(1), 650.
  • Bledsoe MJ, Henderson M, Tassé AM & Knoppers BM (2016). International Biobanking Summit V: Harmonizing Privacy Laws to Enable International Biobank Research. Biopreservation and Biobanking 14(5), 452.
  • Briceño Moraia L, Kaye J, et al. (including Tassé AM, Knoppers BM & Wallace SE) (2016). A comparative analysis of the requirements for the use of data in biobanks based in Finland, Germany, the Netherlands, Norway and the United Kingdom. Medical Law International 14(4), 187.
  • Cai Y, Zijlema WL, Doiron D, Blangiardo M, Burton PR, Fortier I, Gaye A, Gulliver J, de Hoogh K, Hveem K, Mbatchou S, Morley DW, Stolk RP, Elliott P, Hansell AL & Hodgson S (2016). Ambient air pollution, traffic noise and adult prevalent asthma: a BioSHaRE approach. European Respiratory Journal ERJ-02127. doi: 10.1183/13993003.02127-2015
  • Chalmers D, Nicol D, Kaye J, Bell J, Campbell AV, Ho CW & Molnár-Gábor F (2016). Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era. BMC Medical Ethics 17(1), 39.
  • Dalpé G, Kirby E, Ngueng Feze I, Tassé A-M, Knoppers BM, Hamet P, Tremblay J, Phillips MS, Joly Y (2016). The Gatekeeping Function in Personalized Medicine Initiatives. Current Pharmacogenomics and Personalized Medicine 14(1), 36.
  • Dyke SOM, Saulnier KM, Pastinen T, Bourque G & Joly Y (2016). Evolving data access policy: The Canadian context. FACETS 1(1), 138.
  • Dyke SOM, Dove ES & Knoppers BM (2016). Sharing health-related data: a privacy test? Genomic Medicine, doi:10.1038/npjgenmed.2016.24.
  • Dyke SOM, Kirby E, Shabani M, Thorogood A, Kato K, Knoppers BM (2016). Registered Access: A “Triple-A” Approach. European Journal of Human Genetics. doi:10.1038/ejhg.2016.115: 1.
  • Fortier I, Raina P, Van den Heuvel ER, Griffith LE, Craig C, Saliba M, Doiron D, Stolk RP, Knoppers BM, Ferretti V, Granda P & Burton P (2016). Maelstrom Research guidelines for rigorous retrospective data harmonization. International Journal of Epidemiology, doi:10.1093/ije/dyw075
  • Griffith L, van den Heuvel E, Raina P, Fortier I, Sohel N, Hofer S, Payette H, Wolfson C, Belleville S, Kenny M & Doiron D (2016). Comparison of standardization methods for the harmonization of phenotype data: an application to cognitive measures. American Journal of Epidemiology 184(10), 770.
  • Joly Y, de Vries-Seguin E, Chalmers D, Ouellette BFF, Yamada J, Bobrow M & Knoppers BM (2016). Analysis of five years of controlled access and data sharing compliance at the International Cancer Genome Consortium. Nature Genetics 48(3), 224.
  • Joly Y, Dyke SO, Knoppers BM, & Pastinen T (2016). Are Data Sharing and Privacy Protection Mutually Exclusive? Cell 167(5), 1150.
  • Joly Y, So D, Saulnier K & Dyke SO (2016). Epigenetics ELSI: Darker Than You Think?. Trends in Genetics, 32(10), 591.
  • Kaye J, Briceño Moraia L, Mitchell C, Bell J, Bovenberg JA, Tassé AM & Knoppers BM (2016). Access Governance for Biobanks: The Case of the BioSHaRE-EU Cohorts. Biopreservation and Biobanking 14(3), 201.
  • Knoppers BM, Sénécal K, Boisjoli J, Borry P, Cornel MC, Fernandez CV, Grewal J, Holm IA, Nelson E, Pinxten W, Shabani M, Tassé A-M, Zawati MH, Clayton EW on behalf of the P3G International Paediatric Research Platform (2016). Recontacting Pediatric Research Participants for Consent When They Reach the Age of Majority. IRB: Ethics & Human Research 38(6), 1 .
  • Knoppers BM, Nguyen MT, Sénécal K, Tassé AM, Zawati M (2016). Next-Generation Sequencing and the Return of Results. Cold Spring Harb Perspect Med. 6:a026724.
  • Morrison M, Dickenson D, & Lee SSJ (2016). Introduction to the article collection ‘Translation in healthcare: ethical, legal, and social implications’. BMC Medical Ethics 17(1), 74.
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  • Rahimzadeh V, Dyke SOM & Knoppers BM (2016). An International Framework for Data Sharing: Moving Forward with the Global Alliance for Genomics and Health. Biopreservation and Biobanking 14(3), 256.
  • Shabani, M, Thorogood A & Borry, P (2016). Who should have access to genomic data and how should they be held accountable? Perspectives of Data Access Committee members and experts. European Journal of Human Genetics 24, 1671.
  • Rothstein MA, Knoppers BM, Harrell HL (2016). Comparative Approaches to Biobanks and Privacy. Journal of Law, Medicine & Ethics 44(1), 161.
  • Siu LL, Lawler M, Haussler D, Knoppers BM, Lewin J, Vis DJ & Caldas C (2016). Facilitating a culture of responsible and effective sharing of cancer genome data. Nature Medicine 22(5), 464.
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