Bartha Maria Knoppers
Biographic Data
| ID | 1249269 |
|---|---|
| NAME | Bartha Maria Knoppers |
| GIVEN NAMES | Bartha Maria |
| FAMILY NAME | Knoppers |
| SIGNATURE | KNOPPERS B M |
| AFFILIATIONS | McGill University |
| ORCID | 0000-0001-7004-2722 |
| VERIFIED | Yes |
| TOTAL WORKS | 25 |
| TOTAL CITATIONS | 8 |
| AUTHOR COUNT | 25 |
| EDITOR COUNT | 0 |
| FIRST PUBLICATION YEAR | 1982 |
| LATEST PUBLICATION YEAR | 2023 |
| H-INDEX | 1 |
Recording the ethical provenance of data and automating data stewardship
Health organisations use numerous different mechanisms to collect biomedical data, to determine the applicable ethical, legal and institutional conditions of use, and to reutilise the data in accordance with the relevant rules. These methods and mechanisms differ from one organisation to another, and involve considerable specialised human labour, including record-keeping functions and decision-making committees. In reutilising data at scale, howe…
Whither Health Research
Under Article 24 of the Convention on the Rights of the Child ( crc ), children have the right to the highest attainable standard of health. One component of this right that has received little attention is the connection between children’s health and their participation in health-related research. This represents a missed opportunity in the full realisation of the right to health. This paper accordingly argues that Article 24 should obligate or …
Biomedical Data Identifiability in Canada and the European Union
Data identifiability standards in Canada and the European Union rely on the same concepts to distinguish personal data from non-personal data. However, courts have interpreted the substantive content of such metrics divergently. Interpretive ambiguities can create challenges in determining whether data has been successfully anonymised in one jurisdiction, and whether it would also be considered anonymised in another. These difficulties arise from…
The Right to Benefit from Science and Its Implications for Genomic Data Sharing
The right to benefit from science and its applications is one of the least studied, discussed and applied human rights. In the current time of globalization, characterized by the rapid advancement of science and its technological applications, as well as by increased flows of scientific data, there is a growing need to fully awaken the right of everyone to enjoy the benefits of science. This would enable science to better serve the humanitarian p…
Pandemics, privacy, and public health research
Sharing data expediently for pandemic response purposes exposes healthcare providers in Canada to significant regulatory uncertainty. Duplicative and contradictory ethical and legal duties flowing from overlapping sources can stifle flows of medical data among clinicians, researchers, and institutions. Authorities should support caregivers and accelerate research by providing clear guidance to the health sector. Institutions should foster robust …
La télésanté au Québec
Video consultation is increasingly being used to provide telehealth services to patients. However, while the supply of telehealth services is increasing, there are few legal and deontological standards aimed specifically at regulating it. The difficulty in identifying applicable standards may have been a barrier to the deployment of telehealth services. We have conducted an analysis that allows us to identify certain standards applicable to a vid…
Organizational challenges to equity in the delivery of services within a new personalized risk-based approach to breast cancer screening
Emerging evidence opens new possibilities to improve current breast cancer mammography screening programs. One promising avenue is to tailor mammography screening according to individual risk. However, some factors could challenge the implementation of such approach, specifically its potential impact on the equitable delivery of services. This study aims to identify the barriers and facilitators to the equitable delivery of services within a futu…
Broad Consent for Future Research
In the United States, final amendments to the Federal Policy for the Protection of Human Subjects (“the Common Rule”) were published on January 19, 2017, and they will take effect on January 21, 2019. One of the most widely discussed provisions is that for the first time, federal regulations governing research with humans authorize the use of broad consent for future, unspecified research on individually identifiable biospecimens and associated d…
Can research ethics committees enable clinical trial data sharing
Rationale, design, and methods for Canadian alliance for healthy hearts and minds cohort study (CAHHM) – a Pan Canadian cohort study
CAHHM is a prospective cohort study designed to investigate the impact of community level factors, individual health behaviours, and access to health services, on cognitive function, subclinical vascular disease, fat distribution, and the development of chronic diseases among adults living in Canada
Demystifying Biobanks
The second of two commentaries on “Respecting Donors to Biobank Research,” from the January-February 2013 issue
Intrafamilial disclosure of risk for hereditary breast and ovarian cancer
The primary goal of breast and ovarian cancer screening is to minimize the cases of advanced disease and therefore its mortality rate. For hereditary breast and ovarian cancer, one method to reach this goal is to disseminate genetic risk information among family members. However, experience tells us that this information does not always reach family members in a timely manner, if at all. There are many moving parts to a decision to disclose genet…
Connective tissue
Preconception care and genetic risk
Preconception care to address genetic risks in reproduction may be offered either individually to couples with a known or suspected increased risk of having a child with a genetic disorder, or systematically to couples or individuals of reproductive age. The identification of couples at risk of transmitting a (serious) genetic disorder allows those couples to refrain from having children or to adapt their reproductive plans (using prenatal or pre…
Health privacy in genetic research
An abstract is not available for this content so a preview has been provided. Please use the Get access link above for information on how to access this content
La protection de l'information génétique dans le domaine médical au Québec
La prestation de soins de santé mène parfois à la cueillette et la conservation d’informations génétiques sur les patients. Ces informations sont souvent perçues comme des informations intimes et personnelles dont la confidentialité devrait être assurée. Au Québec, aucun cadre législatif distinct ne protège spécifiquement ce type d’informations. Cet article porte sur la protection offerte par la législation québécoise aux informations génétiques …
La Protection De L’information Génétique Dans Le Domaine Médical Au Québec
LA PROTECTION DE L’INFORMATION GÉNÉTIQUE DANS LE DOMAINE MÉDICAL AU QUÉBEC : PRINCIPE GÉNÉRAL DE CONFIDENTIALITÉ ET QUESTIONS SOULEVÉES PAR LES DISPOSITIONS D’EXCEPTION. Un article de la revue Revue de droit de l'Université de Sherbrooke (Volume 36, numéro 1-2, 2005–2006, p. 1-399) diffusée par la plateforme Érudit
The International HapMap Project
The goal of the International HapMap Project is to determine the common patterns of DNA sequence variation in the human genome and to make this information freely available in the public domain. An international consortium is developing a map of these patterns across the genome by determining the genotypes of one million or more sequence variants, their frequencies and the degree of association between them, in DNA samples from populations with a…
Geneticism and Germ Line
An abstract is not available for this content so a preview has been provided. Please use the Get access link above for information on how to access this content
The Human Genome Organization (Hugo)
The Human Genome Organisation (HUGO) is an international membership organization (with 965 current members in 50 countries) whose goal is to coordinate and enhance efforts in the Human Genome Project (HGP). Formally established in 1989 by a group of the world's leading scientists in order to promote genome activities internationally, HUGO operates as a global coordinating organization to create the networks and channels through which genome infor…
Genetic Choices
Symposium: Regulating Germ-Line Gene Therapy
Donor Insemination
An abstract is not available for this content so a preview has been provided. Please use the Get access link above for information on how to access this content
Abortion Law in Francophone Countries
Journal Article Abortion Law in Francophone Countries Get access Bartha Maria Knoppers, Bartha Maria Knoppers 1Bartha Maria Knoppers is Professor of Law, University of Montréal. Isabel Brault is member of Quebec Bar; Elizabeth Sloss IS LL.B., B.C.L., Ruby & Edwardh. Search for other works by this author on: Oxford Academic Google Scholar Isabel Brault, Isabel Brault 1Bartha Maria Knoppers is Professor of Law, University of Montréal. Isabel Brault…
Modern Birth Technology and Human Rights
http://dx.doi.org/10.2307/840116
Confidentiality and accessibility of medical information
Les difficultés relatives à la confidentialité et à l’accès du patient à l’information médicale ont fait l’objet d’études particulières aux niveaux provincial et fédéral. Cet article s’avère une discussion de solutions de la common law canadienne, de la législation québécoise de même que du droit fédéral en statu nascendi. Ainsi, notre analyse permet de constater que la confidentialité de l’information médicale est reconnu en common law canadienn…
Abortion Law in Francophone Countries
Journal Article Abortion Law in Francophone Countries Get access Bartha Maria Knoppers, Bartha Maria Knoppers 1Bartha Maria Knoppers is Professor of Law, University of Montréal. Isabel Brault is member of Quebec Bar; Elizabeth Sloss IS LL.B., B.C.L., Ruby & Edwardh. Search for other works by this author on: Oxford Academic Google Scholar Isabel Brault, Isabel Brault 1Bartha Maria Knoppers is Professor of Law, University of Montréal. Isabel Brault…
The Right to Benefit from Science and Its Implications for Genomic Data Sharing
The right to benefit from science and its applications is one of the least studied, discussed and applied human rights. In the current time of globalization, characterized by the rapid advancement of science and its technological applications, as well as by increased flows of scientific data, there is a growing need to fully awaken the right of everyone to enjoy the benefits of science. This would enable science to better serve the humanitarian p…
Pandemics, privacy, and public health research
Sharing data expediently for pandemic response purposes exposes healthcare providers in Canada to significant regulatory uncertainty. Duplicative and contradictory ethical and legal duties flowing from overlapping sources can stifle flows of medical data among clinicians, researchers, and institutions. Authorities should support caregivers and accelerate research by providing clear guidance to the health sector. Institutions should foster robust …
Donor Insemination
An abstract is not available for this content so a preview has been provided. Please use the Get access link above for information on how to access this content
Modern Birth Technology and Human Rights
http://dx.doi.org/10.2307/840116
Confidentiality and accessibility of medical information
Les difficultés relatives à la confidentialité et à l’accès du patient à l’information médicale ont fait l’objet d’études particulières aux niveaux provincial et fédéral. Cet article s’avère une discussion de solutions de la common law canadienne, de la législation québécoise de même que du droit fédéral en statu nascendi. Ainsi, notre analyse permet de constater que la confidentialité de l’information médicale est reconnu en common law canadienn…
Modern Birth Technology and Human Rights
http://dx.doi.org/10.2307/840116
Abortion Law in Francophone Countries
Journal Article Abortion Law in Francophone Countries Get access Bartha Maria Knoppers, Bartha Maria Knoppers 1Bartha Maria Knoppers is Professor of Law, University of Montréal. Isabel Brault is member of Quebec Bar; Elizabeth Sloss IS LL.B., B.C.L., Ruby & Edwardh. Search for other works by this author on: Oxford Academic Google Scholar Isabel Brault, Isabel Brault 1Bartha Maria Knoppers is Professor of Law, University of Montréal. Isabel Brault…
Donor Insemination
An abstract is not available for this content so a preview has been provided. Please use the Get access link above for information on how to access this content
Genetic Choices
Symposium: Regulating Germ-Line Gene Therapy
The Human Genome Organization (Hugo)
The Human Genome Organisation (HUGO) is an international membership organization (with 965 current members in 50 countries) whose goal is to coordinate and enhance efforts in the Human Genome Project (HGP). Formally established in 1989 by a group of the world's leading scientists in order to promote genome activities internationally, HUGO operates as a global coordinating organization to create the networks and channels through which genome infor…
Geneticism and Germ Line
An abstract is not available for this content so a preview has been provided. Please use the Get access link above for information on how to access this content
The International HapMap Project
The goal of the International HapMap Project is to determine the common patterns of DNA sequence variation in the human genome and to make this information freely available in the public domain. An international consortium is developing a map of these patterns across the genome by determining the genotypes of one million or more sequence variants, their frequencies and the degree of association between them, in DNA samples from populations with a…
La Protection De L’information Génétique Dans Le Domaine Médical Au Québec
LA PROTECTION DE L’INFORMATION GÉNÉTIQUE DANS LE DOMAINE MÉDICAL AU QUÉBEC : PRINCIPE GÉNÉRAL DE CONFIDENTIALITÉ ET QUESTIONS SOULEVÉES PAR LES DISPOSITIONS D’EXCEPTION. Un article de la revue Revue de droit de l'Université de Sherbrooke (Volume 36, numéro 1-2, 2005–2006, p. 1-399) diffusée par la plateforme Érudit
La protection de l'information génétique dans le domaine médical au Québec
La prestation de soins de santé mène parfois à la cueillette et la conservation d’informations génétiques sur les patients. Ces informations sont souvent perçues comme des informations intimes et personnelles dont la confidentialité devrait être assurée. Au Québec, aucun cadre législatif distinct ne protège spécifiquement ce type d’informations. Cet article porte sur la protection offerte par la législation québécoise aux informations génétiques …
Health privacy in genetic research
An abstract is not available for this content so a preview has been provided. Please use the Get access link above for information on how to access this content
Connective tissue
Preconception care and genetic risk
Preconception care to address genetic risks in reproduction may be offered either individually to couples with a known or suspected increased risk of having a child with a genetic disorder, or systematically to couples or individuals of reproductive age. The identification of couples at risk of transmitting a (serious) genetic disorder allows those couples to refrain from having children or to adapt their reproductive plans (using prenatal or pre…
Intrafamilial disclosure of risk for hereditary breast and ovarian cancer
The primary goal of breast and ovarian cancer screening is to minimize the cases of advanced disease and therefore its mortality rate. For hereditary breast and ovarian cancer, one method to reach this goal is to disseminate genetic risk information among family members. However, experience tells us that this information does not always reach family members in a timely manner, if at all. There are many moving parts to a decision to disclose genet…
Demystifying Biobanks
The second of two commentaries on “Respecting Donors to Biobank Research,” from the January-February 2013 issue
Rationale, design, and methods for Canadian alliance for healthy hearts and minds cohort study (CAHHM) – a Pan Canadian cohort study
CAHHM is a prospective cohort study designed to investigate the impact of community level factors, individual health behaviours, and access to health services, on cognitive function, subclinical vascular disease, fat distribution, and the development of chronic diseases among adults living in Canada
Can research ethics committees enable clinical trial data sharing
Organizational challenges to equity in the delivery of services within a new personalized risk-based approach to breast cancer screening
Emerging evidence opens new possibilities to improve current breast cancer mammography screening programs. One promising avenue is to tailor mammography screening according to individual risk. However, some factors could challenge the implementation of such approach, specifically its potential impact on the equitable delivery of services. This study aims to identify the barriers and facilitators to the equitable delivery of services within a futu…
Broad Consent for Future Research
In the United States, final amendments to the Federal Policy for the Protection of Human Subjects (“the Common Rule”) were published on January 19, 2017, and they will take effect on January 21, 2019. One of the most widely discussed provisions is that for the first time, federal regulations governing research with humans authorize the use of broad consent for future, unspecified research on individually identifiable biospecimens and associated d…
La télésanté au Québec
Video consultation is increasingly being used to provide telehealth services to patients. However, while the supply of telehealth services is increasing, there are few legal and deontological standards aimed specifically at regulating it. The difficulty in identifying applicable standards may have been a barrier to the deployment of telehealth services. We have conducted an analysis that allows us to identify certain standards applicable to a vid…
The Right to Benefit from Science and Its Implications for Genomic Data Sharing
The right to benefit from science and its applications is one of the least studied, discussed and applied human rights. In the current time of globalization, characterized by the rapid advancement of science and its technological applications, as well as by increased flows of scientific data, there is a growing need to fully awaken the right of everyone to enjoy the benefits of science. This would enable science to better serve the humanitarian p…
Pandemics, privacy, and public health research
Sharing data expediently for pandemic response purposes exposes healthcare providers in Canada to significant regulatory uncertainty. Duplicative and contradictory ethical and legal duties flowing from overlapping sources can stifle flows of medical data among clinicians, researchers, and institutions. Authorities should support caregivers and accelerate research by providing clear guidance to the health sector. Institutions should foster robust …
Biomedical Data Identifiability in Canada and the European Union
Data identifiability standards in Canada and the European Union rely on the same concepts to distinguish personal data from non-personal data. However, courts have interpreted the substantive content of such metrics divergently. Interpretive ambiguities can create challenges in determining whether data has been successfully anonymised in one jurisdiction, and whether it would also be considered anonymised in another. These difficulties arise from…
Recording the ethical provenance of data and automating data stewardship
Health organisations use numerous different mechanisms to collect biomedical data, to determine the applicable ethical, legal and institutional conditions of use, and to reutilise the data in accordance with the relevant rules. These methods and mechanisms differ from one organisation to another, and involve considerable specialised human labour, including record-keeping functions and decision-making committees. In reutilising data at scale, howe…
Whither Health Research
Under Article 24 of the Convention on the Rights of the Child ( crc ), children have the right to the highest attainable standard of health. One component of this right that has received little attention is the connection between children’s health and their participation in health-related research. This represents a missed opportunity in the full realisation of the right to health. This paper accordingly argues that Article 24 should obligate or …
Political science (19 works) · Ethics in Clinical Research (12 works) · Computer Science (10 works) · Medicine (10 works) · Business (9 works) · Law (8 works) · Biology (7 works) · Biomedical Ethics and Regulation (6 works) · Public relations (6 works) · Internet privacy (5 works)