Bartha M Knoppers

Summary

Affiliation: McGill University
Country: Canada

Publications

  1. pmc A human rights approach to an international code of conduct for genomic and clinical data sharing
    Bartha M Knoppers
    Centre of Genomics and Policy, McGill University, 740 Dr Penfield Avenue, Suite 5200, Montreal, H3A 0G1, Canada
    Hum Genet 133:895-903. 2014
  2. pmc Genotype-driven recruitment: a strategy whose time has come?
    Isabelle Budin-Ljøsne
    Division of Epidemiology, Department of Genes and Environment, Norwegian Institute of Public Health, P, O, Box 4404, Nydalen, Oslo NO 0403, Norway
    BMC Med Genomics 6:19. 2013
  3. pmc Recruiting terminally ill patients into non-therapeutic oncology studies: views of health professionals
    Erika Kleiderman
    Centre of Genomics and Policy, Faculty of Medicine, Dept of Human Genetics, McGill University, 740 Dr, Penfield Avenue, 5th Floor, Suite 5200, Montreal, QC H3A 1A4, Canada
    BMC Med Ethics 13:33. 2012
  4. pmc Population studies: return of research results and incidental findings Policy Statement
    Bartha Maria Knoppers
    Public Population Project in Genomics and Society P G, Montreal, Quebec, Canada
    Eur J Hum Genet 21:245-7. 2013
  5. doi request reprint Sampling populations of humans across the world: ELSI issues
    Bartha Maria Knoppers
    Centre of Genomics and Policy, McGill University and Genome Quebec Innovation Centre, Montreal, Quebec H3A 1A4, Canada
    Annu Rev Genomics Hum Genet 13:395-413. 2012
  6. pmc Bridging consent: from toll bridges to lift bridges?
    Isabelle Budin-Ljøsne
    Norwegian Institute of Public Health, Division of Epidemiology, Department of Genes and Environment, PO Box 4404 Nydalen, NO 0403 Oslo, Norway
    BMC Med Genomics 4:69. 2011
  7. pmc Towards a data sharing Code of Conduct for international genomic research
    Bartha Maria Knoppers
    Department of Human Genetics, McGill University, 740 Dr Penfield Avenue, Montreal, Quebec H3A 1A4, Canada
    Genome Med 3:46. 2011
  8. doi request reprint From genomic databases to translation: a call to action
    Bartha Maria Knoppers
    Department of Human Genetics, McGill University, Montreal, Quebec, H3A 1A4, Canada
    J Med Ethics 37:515-6. 2011
  9. doi request reprint Framing genomics, public health research and policy: points to consider
    Bartha Maria Knoppers
    Centre of Genomics and Policy, Department of Human Genetics, McGill University, Montreal, Que, Canada
    Public Health Genomics 13:224-34. 2010
  10. pmc Stem cell banking: between traceability and identifiability
    Bartha M Knoppers
    Centre of Genomics and Policy, McGill University, 740 Dr Penfield Avenue, Suite 5206, Montreal, QC, H3A 1A4, Canada
    Genome Med 2:73. 2010

Detail Information

Publications40

  1. pmc A human rights approach to an international code of conduct for genomic and clinical data sharing
    Bartha M Knoppers
    Centre of Genomics and Policy, McGill University, 740 Dr Penfield Avenue, Suite 5200, Montreal, H3A 0G1, Canada
    Hum Genet 133:895-903. 2014
    ..It is time to apply these twin rights to internationally collaborative genomic and clinical data sharing. ..
  2. pmc Genotype-driven recruitment: a strategy whose time has come?
    Isabelle Budin-Ljøsne
    Division of Epidemiology, Department of Genes and Environment, Norwegian Institute of Public Health, P, O, Box 4404, Nydalen, Oslo NO 0403, Norway
    BMC Med Genomics 6:19. 2013
    ..These individuals may or may have not participated in research before and may or may not be aware that their genetic information is available for research...
  3. pmc Recruiting terminally ill patients into non-therapeutic oncology studies: views of health professionals
    Erika Kleiderman
    Centre of Genomics and Policy, Faculty of Medicine, Dept of Human Genetics, McGill University, 740 Dr, Penfield Avenue, 5th Floor, Suite 5200, Montreal, QC H3A 1A4, Canada
    BMC Med Ethics 13:33. 2012
    ..Our objective was to explore clinician-researcher attitudes and concerns when recruiting patients who are in advanced stages of cancer into non-therapeutic research...
  4. pmc Population studies: return of research results and incidental findings Policy Statement
    Bartha Maria Knoppers
    Public Population Project in Genomics and Society P G, Montreal, Quebec, Canada
    Eur J Hum Genet 21:245-7. 2013
    ....
  5. doi request reprint Sampling populations of humans across the world: ELSI issues
    Bartha Maria Knoppers
    Centre of Genomics and Policy, McGill University and Genome Quebec Innovation Centre, Montreal, Quebec H3A 1A4, Canada
    Annu Rev Genomics Hum Genet 13:395-413. 2012
    ..It remains to be seen whether current governance approaches will be adequate to handle the impact of next-generation sequencing technologies on communication with participants in population biobanking studies...
  6. pmc Bridging consent: from toll bridges to lift bridges?
    Isabelle Budin-Ljøsne
    Norwegian Institute of Public Health, Division of Epidemiology, Department of Genes and Environment, PO Box 4404 Nydalen, NO 0403 Oslo, Norway
    BMC Med Genomics 4:69. 2011
    ..Comparative analyses of 1) current ethical and legal frameworks governing consent and 2) informed consent models found in disease-specific and population-based research were conducted...
  7. pmc Towards a data sharing Code of Conduct for international genomic research
    Bartha Maria Knoppers
    Department of Human Genetics, McGill University, 740 Dr Penfield Avenue, Montreal, Quebec H3A 1A4, Canada
    Genome Med 3:46. 2011
    ..We propose seven different principles and a preliminary international data sharing Code of Conduct for ongoing discussion...
  8. doi request reprint From genomic databases to translation: a call to action
    Bartha Maria Knoppers
    Department of Human Genetics, McGill University, Montreal, Quebec, H3A 1A4, Canada
    J Med Ethics 37:515-6. 2011
    ....
  9. doi request reprint Framing genomics, public health research and policy: points to consider
    Bartha Maria Knoppers
    Centre of Genomics and Policy, Department of Human Genetics, McGill University, Montreal, Que, Canada
    Public Health Genomics 13:224-34. 2010
    ....
  10. pmc Stem cell banking: between traceability and identifiability
    Bartha M Knoppers
    Centre of Genomics and Policy, McGill University, 740 Dr Penfield Avenue, Suite 5206, Montreal, QC, H3A 1A4, Canada
    Genome Med 2:73. 2010
    ..This paper analyzes convergence and divergence in issues surrounding policy harmonization, transnational sharing, informed consent, traceability and return of results in the context of stem cell banks...
  11. pmc Is rigorous retrospective harmonization possible? Application of the DataSHaPER approach across 53 large studies
    Isabel Fortier
    Research Institute McGill University Health Centre, Montreal, Quebec, Canada
    Int J Epidemiol 40:1314-28. 2011
    ..datashaper.org) was developed to enable the rigorous assessment of the inferential equivalence, i.e. the potential for harmonization, of selected information from individual studies...
  12. pmc Emerging issues in paediatric health research consent forms in Canada: working towards best practices
    Edward S Dove
    Department of Human Genetics, Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, QC, H3A 0G1, Canada
    BMC Med Ethics 14:5. 2013
    ..Greater inclusion of children in research has led to questions about how paediatric consent operates in practice to accord with current and emerging legal and socio-ethical issues, norms, and requirements...
  13. pmc Exploring resources for intrafamilial communication of cancer genetic risk: we still need to talk
    Kelly A McClellan
    Department of Human Genetics, Faculty of Medicine, Centre for Genomics and Policy, McGill University, Montreal, QC, Canada
    Eur J Hum Genet 21:903-10. 2013
    ....
  14. doi request reprint Sustained interaction: the new normal for stem cell repositories?
    Rosario Isasi
    Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada
    Regen Med 6:783-92. 2011
    ..To guarantee the integrity of research while respecting donors' autonomy and preferences, stem cell repositories require a prospective approach to informed consent...
  15. doi request reprint Disclosure and management of research findings in stem cell research and banking: policy statement
    Rosario Isasi
    Center of Genomics and Policy, Faculty of Medicine, Department of Human Genetics, McGill University, Montreal, QC, Canada
    Regen Med 7:439-48. 2012
    ..We present the International Stem Forum Ethics Working Party's Policy Statement and trust that it will stimulate debate and meet the concerns of researchers and research participants alike...
  16. pmc Power to the people: a wiki-governance model for biobanks
    Edward S Dove
    Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, 740 Dr Penfield Avenue, Suite 5200, Montreal, Quebec, H3A 0G1, Canada
    Genome Biol 13:158. 2012
    ..We propose a wiki-governance model for biobanks that harnesses Web 2.0, and which gives citizens the ability to collaborate in biobank governance and policymaking...
  17. doi request reprint Paediatric biobanks: what makes them so unique?
    Julie Samuël
    FRSQ, Quebec, Canada
    J Paediatr Child Health 48:E1-3. 2012
    ....
  18. ncbi request reprint Preimplantation genetic diagnosis: an overview of socio-ethical and legal considerations
    Bartha M Knoppers
    Centre de recherche en droit public CRDP, Universite de Montreal, Montreal, Quebec, Canada
    Annu Rev Genomics Hum Genet 7:201-21. 2006
    ..We also present a brief survey of PGD-related regulatory schemes in several countries, including the United Kingdom and the United States...
  19. ncbi request reprint Genomic databases access agreements: legal validity and possible sanctions
    Yann Joly
    Deptartment of Human Genetics, Faculty of Medicine, Centre of Genomics and Policy, McGill University, 740 Dr Penfield Avenue, Suite 5101, Montreal, QC H3A 1A4, Canada
    Hum Genet 130:441-9. 2011
    ..This suggests the importance for researchers to undertake additional empirical studies on the clarity and accessibility of existing database access agreements and related policies in the near future...
  20. doi request reprint Policy and data-intensive scientific discovery in the beginning of the 21st century
    Vural Ozdemir
    Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, Montreal, QC, Canada
    OMICS 15:221-5. 2011
    ..This article outlines the key policy issues and gaps that emerged from the multidisciplinary discussions at the NSF-funded DIS workshop held at the Seattle Children's Research Institute in Seattle, on September 19-20, 2010...
  21. doi request reprint Steering vaccinomics innovations with anticipatory governance and participatory foresight
    Vural Ozdemir
    Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, Montreal, QC, Canada
    OMICS 15:637-46. 2011
    ..Ultimately, this serves to integrate scientific and social knowledge thereby steering innovations to coproduce results and outputs that are socially robust and context sensitive...
  22. ncbi request reprint Regulatory approaches to reproductive genetic testing
    Bartha M Knoppers
    Centre de recherche en droit public CRDP, Faculte de droit, Universite de Montreal, CP 6128 Succ, Centre Ville, Montreal, Quebec, Canada H3C3J7
    Hum Reprod 19:2695-701. 2004
    ..Nowhere is this more evident than in the substantive requirements...
  23. pmc Physicians, genetics and life insurance
    Bartha M Knoppers
    Genetics and Society Project, Universite de Montreal, Montreal, Quebec
    CMAJ 170:1421-3. 2004
  24. pmc Quality, quantity and harmony: the DataSHaPER approach to integrating data across bioclinical studies
    Isabel Fortier
    Public Population Project in Genomics P G, Montreal, QC, Canada
    Int J Epidemiol 39:1383-93. 2010
    ..This implies that the collection and recording of information and data must be done in a manner that is sufficiently similar in the different studies to allow valid synthesis to take place...
  25. pmc Publishing SNP genotypes of human embryonic stem cell lines: policy statement of the International Stem Cell Forum Ethics Working Party
    Bartha M Knoppers
    International Stem Cell Forum Ethics Working Party Centre of Genomics and Policy, Faculty of Medicine, Department of Human Genetics McGill University, 740 Dr Penfield Avenue, Rm 5214, Montreal, QC, H3A 1A4, Canada
    Stem Cell Rev 7:482-4. 2011
    ..It proposes a balanced approach between the goals of open science and data sharing with the respect for fundamental bioethical principles (autonomy, privacy, beneficence, justice and research merit and integrity)...
  26. ncbi request reprint Governing stem cell banks and registries: emerging issues
    Rosario M Isasi
    Centre de recherche en droit public, Universite de Montreal, C P 6128 Succ Centre Ville, Montreal, QC H3C 3J7, Canada
    Stem Cell Res 3:96-105. 2009
    ..g., SCNT, parthenogenesis, iPs) (IV)...
  27. pmc Personalized medicine and access to health care: potential for inequitable access?
    Kelly A McClellan
    Department of Human Genetics, Centre for Genomics and Policy, Faculty of Medicine, McGill University, Montreal, QC, Canada
    Eur J Hum Genet 21:143-7. 2013
    ..Only by anticipating and addressing the potential for inequitable access to health care occurring from using genetic information will we move closer to realizing the goal of personalized medicine: to improve the health of individuals...
  28. ncbi request reprint Our social genome?
    Bartha M Knoppers
    Centre de recherche en droit public, Universite de Montreal, C P 6128 Succ Centre Ville, Montreal, Quebec, H3T 1J7, Canada
    Trends Biotechnol 25:284-8. 2007
    ..It is only through an attachment to justice and solidarity that the dignity and well-being of persons, both as humans and as citizens, can truly be fostered...
  29. ncbi request reprint Whole-genome sequencing in newborn screening programs
    Bartha M Knoppers
    Department of Human Genetics, McGill University, Montreal, Quebec H3A OG1, Canada
    Sci Transl Med 6:229cm2. 2014
    ..Any change in the goals of NBS programs should be discussed carefully and should represent the best interests of the child. ..
  30. ncbi request reprint Fostering public cord blood banking and research in Canada
    Rosario Isasi
    Centre of Genomics and Society, McGill University, Montreal, Quebec, Canada
    Stem Cells Dev 22:29-34. 2013
    ..The Canadian approach represents an ideal model for comparison as it is a country in which the national public bank (and other regional/provincial public banks) coexists with private companies...
  31. pmc Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information
    Gillian Nycum
    Centre de recherche en droit public, Universite de Montreal, Montreal, Quebec, Canada
    Eur J Hum Genet 17:872-80. 2009
    ..This balancing represents an effort to reconcile conflicting approaches to protecting family members, and is a moral dilemma. This review sheds light on the factors that contribute to resolve this dilemma...
  32. ncbi request reprint Beyond the permissibility of embryonic and stem cell research: substantive requirements and procedural safeguards
    Rosario M Isasi
    Centre de recherche en droit public CRDP, Universite de Montreal, Montreal, Quebec, Canada
    Hum Reprod 21:2474-81. 2006
    ....
  33. ncbi request reprint Genetic information and life insurance: a 'real' risk?
    Yann Joly
    Centre de recherche en droit public, Faculty of Law, University of Montreal, Montreal, Canada
    Eur J Hum Genet 11:561-4. 2003
    ..However, the benefits to be gained by allowing insurers access to relevant genetic data could justify fostering a more active role in the use of genetic information by insurance companies...
  34. doi request reprint Monetary payments for the procurement of oocytes for stem cell research: In search of ethical and political consistency
    Rosario M Isasi
    Centre de recherche en droit public, Universite de Montreal, Centre Ville, QC, Canada
    Stem Cell Res 1:37-44. 2007
    ....
  35. ncbi request reprint Ethical dimensions of genetics in pediatric neurology: a look into the future
    Denise M Avard
    Centre de recherche en droit public, Universite de Montreal, Quebec, Canada
    Semin Pediatr Neurol 9:53-61. 2002
    ..In particular, physicians, policy-makers, and families should be knowledgeable about the guidelines and have a good understanding of the psychosocial and ethical issues associated with genetics in pediatric neurology...
  36. pmc The commercialization of genomic research in Canada
    Yann Joly
    Assistant Professor, Department of Human Genetics, Faculty of Medicine, McGill University, Montreal, QC
    Healthc Policy 6:24-32. 2010
    ..The full sets of recommendations are available upon request to the authors...
  37. pmc From banking to international governance: fostering innovation in stem cell research
    Rosario Isasi
    Centre of Genomics and Policy, McGill University, Montreal, QC, Canada H3A 1A1
    Stem Cells Int 2011:498132. 2011
    ..Moreover, the paper will shed light on the numerous international initiatives that have arisen to help harmonize and standardize stem cell banking and research processes to overcome such challenges...