Bartha M Knoppers

Summary

Affiliation: McGill University
Country: Canada

Publications

  1. ncbi 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
  2. ncbi 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
  3. ncbi 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
  4. ncbi 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
  5. ncbi 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
  6. ncbi 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
  7. ncbi 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
  8. ncbi 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
  9. ncbi 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
  10. ncbi 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

Detail Information

Publications29

  1. ncbi 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
    ....
  2. ncbi 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...
  3. ncbi 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...
  4. ncbi 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
    ....
  5. ncbi 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...
  6. ncbi 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...
  7. ncbi 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
    ....
  8. ncbi 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...
  9. ncbi 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...
  10. ncbi 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...
  11. ncbi 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...
  12. ncbi 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...
  13. ncbi 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...
  14. ncbi 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...
  15. ncbi Paediatric biobanks: what makes them so unique?
    Julie Samuël
    FRSQ, Quebec, Canada
    J Paediatr Child Health 48:E1-3. 2012
    ....
  16. ncbi 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)...
  17. ncbi 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...
  18. ncbi 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...
  19. ncbi 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...
  20. ncbi 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...
  21. ncbi 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...
  22. ncbi 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...
  23. ncbi 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
    ....
  24. ncbi 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...
  25. ncbi Ethical dimensions of genetics in pediatric neurology: a look into the future
    Denise M Avard
    Centre de recherche en droit public, , 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...
  26. ncbi 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
    ....
  27. ncbi 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)...
  28. ncbi 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...
  29. ncbi 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...