List of works by Bartha Knoppers

"CRISPR babies": What does this mean for science and Canada?

scientific article published on 01 January 2019

"Matching" consent to purpose: The example of the Matchmaker Exchange.

scientific article published on 14 June 2017

"Well-bear and well-rear" in China?

scientific article published on September 1998

'Principled' personalized medicine?

scientific article published on 01 November 2009

'Serious' factor-a relevant starting point for further debate: a response

scientific article published on 06 November 2019

A P3G generic access agreement for population genomic studies

scientific article (publication date: May 2013)

A Tale of Two Capacities: Including Children and Decisionally Vulnerable Adults in Biomedical Research

A decision tool to guide the ethics review of a challenging breed of emerging genomic projects

scientific article

A human rights approach to an international code of conduct for genomic and clinical data sharing

scientific article (publication date: July 2014)

A marathon, not a sprint – neuroimaging, Open Science and ethics

scientific article published in 2021

A new twist on an old problem: primary care physicians and results from direct-to-consumer genetic testing

scientific article published on 01 November 2013

A policy Delphi study to validate the key implications of data sharing (KIDS) framework for pediatric genomics in Canada

scientific article

A response to "Personalised medicine and population health: breast and ovarian cancer"

scientific article published on 27 February 2019

A review of the key issues associated with the commercialization of biobanks

scientific article (publication date: March 2014)

A roadmap for restoring trust in Big Data

article by Mark Lawler et al published August 2018 in Lancet Oncology Commission

A second generation human haplotype map of over 3.1 million SNPs

scientific article

A step forward for data protection and biomedical research

scientific article published in April 2016

ACCE, Pharmacogenomics, and Stopping Clinical Trials: Time to Extend the CONSORT Statement?

journal article; published in The American Journal of Bioethics in 2011

Abortion law in Francophone countries

scientific article published in January 1990

Accelerating evidence gathering and approval of precision medicine therapies: the FDA takes aim at rare mutations

scientific article published on 10 July 2018

Access Governance for Biobanks: The Case of the BioSHaRE-EU Cohorts

scientific article published on 16 May 2016

An International Framework for Data Sharing: Moving Forward with the Global Alliance for Genomics and Health

scientific article

An ethics safe harbor for international genomics research?

scientific article

An implementation framework for the feedback of individual research results and incidental findings in research

scientific article

An integrated map of genetic variation from 1,092 human genomes

scientific article

An international effort towards developing standards for best practices in analysis, interpretation and reporting of clinical genome sequencing results in the CLARITY Challenge.

scientific article

Anonymity 2.0: direct-to-consumer genetic testing and donor conception

scientific article published on 02 January 2014

Are Data Sharing and Privacy Protection Mutually Exclusive?

scientific article

Are we asking the right ethics questions on drug shortages? Suggestions for a global and anticipatory ethics framework

scientific article published in January 2012

Attitudes of Canadian researchers toward the return to participants of incidental and targeted genomic findings obtained in a pediatric research setting

scientific article (publication date: July 2013)

Attitudes of Researchers to the Return of Incidental and Targeted Genomic Findings Obtained in a Research Setting to Participants

scientific article

Attitudes of parents toward the return of targeted and incidental genomic research findings in children

Attitudes to the return of incidental and targeted genomic findings obtained in a high-risk pediatric cancer versus an inherited genetic condition research setting

BRCA Challenge: BRCA Exchange as a global resource for variants in BRCA1 and BRCA2

scientific article published on 26 December 2018

Beyond public health genomics: proposals from an international working group

scientific article

Beyond the permissibility of embryonic and stem cell research: substantive requirements and procedural safeguards

scientific article published on 27 July 2006

Beyond the rhetoric: population genetics and benefit-sharing.

scientific article published in January 2003

Biobanking for Genomic and Personalized Health Research: Participant Perceptions and Preferences

scientific article published on 17 April 2020

Biobanking: international norms

scientific article

Biobanks: simplifying consent

scientific article published on 01 July 2004

Bioethics for clinicians: 14. Ethics and genetics in medicine

scientific article

Biotechnologies nibbling at the legal "human"

scientific article published on 01 December 2019

Blurring lines. The research activities of direct-to-consumer genetic testing companies raise questions about consumers as research subjects

scientific article published on 16 July 2010

Bridging consent: from toll bridges to lift bridges?

scientific article

Bridging stem cell research and medicine: a learning health system

scientific article published on 25 July 2018

Bridging the European Data Sharing Divide in Genomic Science (Preprint)

scientific article published in 2022

Bringing Code to Data: Don't Forget Governance

scientific article published on 11 June 2020

Broaden human-rights focus for health data under GDPR

scientific article published in Nature

Building a data sharing model for global genomic research

scientific article

COVID-19 and beyond: a call for action and audacious solidarity to all the citizens and nations, it is humanity’s fight

scientific article published in 2020

CRISPR germline engineering--the community speaks

scientific article published on May 2015

Can I be sued for that? Liability risk and the disclosure of clinically significant genetic research findings

scientific article

Canada's Assisted Human Reproduction Act: Pragmatic Reforms in Support of Research

scientific article published on 10 July 2019

Catalyzing umbilical cord blood research in Canada: a survey of current needs and practices of principal investigators

scientific article published on 01 January 2009

Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine

scientific article

Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine

article

Clinical trial data sharing: here's the challenge

scientific article published on 21 August 2019

Cohort profile of the CARTaGENE study: Quebec's population-based biobank for public health and personalized genomics

scientific article

Comparative Approaches to Biobanks and Privacy.

scientific article

Comparative Approaches to Genetic Discrimination: Chasing Shadows?

scientific article published on 29 March 2017

Connective tissue: Cancer patients’ attitudes towards medical research using excised (tumour) tissue

scientific article published on 8 August 2011

Consent Codes: Upholding Standard Data Use Conditions

scientific article

Consent and population genomics: the creation of generic tools.

scientific article published in March 2009

Consent recommendations for research and international data sharing involving persons with dementia

scholarly article by Adrian Thorogood et al published October 2018 in Alzheimer's and Dementia

Consent revisited: points to consider

scientific article published on 01 January 2005

Consent to 'personal' genomics and privacy. Direct-to-consumer genetic tests and population genome research challenge traditional notions of privacy and consent

scientific article published on 7 May 2010

Control of DNA samples and information.

scientific article published in June 1998

Correction to: Accelerating evidence gathering and approval of precision medicine therapies: the FDA takes aim at rare mutations

scientific article published on 01 August 2019

Correction to: Pandemics, privacy, and public health research

scientific article published on 13 July 2020

Creating a data resource: what will it take to build a medical information commons?

scientific article published on 22 September 2017

Criminal Prohibition of Wrongful Re‑identification: Legal Solution or Minefield for Big Data?

scientific article published on 14 September 2017

Current trends in biobanking for rare diseases: a review [Corrigendum]

scientific article published in March 2015

Currents in contemporary bioethics. Open access as benefit sharing? The example of publicly funded large-scale genomic databases

scientific article

DNA sampling and informed consent

scientific article published on May 1989

DNA sampling and informed consent

scientific article published on January 1991

Data Safe Havens in health research and healthcare

scientific article

Data Sharing - Is the Juice Worth the Squeeze?

scientific article

Data analysis: Create a cloud commons

scientific article

Data protection and consent to biomedical research: a step forward?

scientific article published in September 2014

Data sharing in large research consortia: experiences and recommendations from ENGAGE

scientific article (publication date: March 2014)

Data sharing in stem cell translational science: policy statement by the International Stem Cell Forum Ethics Working Party

scientific article

Data sharing in the post-genomic world: the experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO)

scientific article (publication date: 2012)

Data sharing, year 1--access to data from industry-sponsored clinical trials

scientific article

DataSHIELD: resolving a conflict in contemporary bioscience--performing a pooled analysis of individual-level data without sharing the data

scientific article (publication date: October 2010)

DataSHIELD: taking the analysis to the data, not the data to the analysis

scientific article

Demystifying biobanks

scientific article published in September 2013

Developing Educational Resources to Advance Umbilical Cord Blood Banking and Research: A Canadian Perspective

scientific article published in May 2015

Developing registries of volunteers: key principles to manage issues regarding personal information protection: Figure 1 ⬇️

scientific article published on September 29, 2010

Development of a consent resource for genomic data sharing in the clinical setting

article

Direct-to-consumer genetic testing: driving choice? ⬇️

scientific article published on 01 November 2010

Disclosure and management of research findings in stem cell research and banking: policy statement.

scientific article published in May 2012

Do It Yourself Newborn Screening

scientific article published on 01 June 2016

Does policy grow on trees?

scientific article published on 22 December 2014

Don Chalmers: His Contributions to Legal Research and Education, Health Law, and Research Ethics, Locally and Globally

scientific article published on 01 December 2020

Don't Take It Personal: European Union Legal Aspects of Procuring and Protecting Environmental Exposure Data in Population Biobanks Through the Use of a Geo-Information-Systems Toolkit

scientific article

Donor insemination: children as in concreto or in abstracto subjects of rights?

scientific article published on 01 August 1993

Duty to recontact: a legal harbinger?

scientific article published in November 2001

Editorial (An Idea Whose Time Has Come? An African Foresight Observatory on Genomics Medicine and Data-Intensive Global Science)

Emerging issues in paediatric health research consent forms in Canada: working towards best practices

scientific article

Enabling pharmacogenomic clinical trials through sampling.

scientific article published in December 2010

Envisioning Implementation of a Personalized Approach in Breast Cancer Screening Programs: Stakeholder Perspectives

scientific article published on 01 November 2019

Epigenome-based cancer risk prediction: rationale, opportunities and challenges.

scientific article published on 27 February 2018

Ethical and Analytic Challenges With Genomic Sequencing of Relapsed Hematologic Malignancies Following Allogeneic Hematopoietic Stem-Cell Transplantation

Ethical and legal concerns: reproductive technologies 1990-1993.

scientific article published in October 1993

Ethical challenges and innovations in the dissemination of genomic data: the experience of the PERSPECTIVE project

scientific article published in 2015

Ethical challenges of precision cancer medicine

scientific article published on 09 October 2020

Ethical decision-making by hospital committees.

scientific article published on October 1984

Ethical dimensions of genetics in pediatric neurology: a look into the future

scientific article

Ethical guideposts for allelic variation databases

scientific article

Ethical issues in international collaborative research on the human genome: the HGP and the HGDP.

scientific article

Ethical issues in secondary uses of human biological materials from mass disasters

scientific article published on January 2006

Ethical issues involved in establishing a registry for familial Alzheimer's disease

scientific article published on January 1994

Ethical, Legal, and Regulatory Issues for the Implementation of Omics-Based Risk Prediction of Women's Cancer: Points to Consider

scientific article published on 17 September 2018

Ethical, Legal, and Social Issues (ELSI) of Responsible Data Sharing Involving Children in Genomics: A Systematic Literature Review of Reasons

scientific article published on 25 September 2020

Ethics and Big Data in health

scientific article published on 08 July 2017

Ethics approval in applications for open-access clinical trial data: An analysis of researcher statements to clinicalstudydatarequest.com

scientific article published on 8 September 2017

Ethics, big data and computing in epidemiology and public health

scientific article

Evaluation of BRCA1 and BRCA2 mutation prevalence, risk prediction models and a multistep testing approach in French-Canadian families with high risk of breast and ovarian cancer

scientific article published on 11 August 2006

Exploring resources for intrafamilial communication of cancer genetic risk: we still need to talk

scientific article published on 23 January 2013

Exposing participants? Population biobanks go geo.

scientific article published on 25 March 2015

Extending the reach of public health genomics: what should be the agenda for public health in an era of genome-based and “personalized” medicine?

scientific article published in December 2010

FORGE Canada Consortium: outcomes of a 2-year national rare-disease gene-discovery project

scientific article

Facilitating a culture of responsible and effective sharing of cancer genome data

scientific article

Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information

scientific article

Failure to replicate the association of rare loss-of-function variants in type I IFN immunity genes with severe COVID-19

scientific article published on 21 December 2020

Fostering public cord blood banking and research in Canada.

scientific article

Framework for responsible sharing of genomic and health-related data

scientific article

Framing genomics, public health research and policy: points to consider

scientific article

From Poetry to Policy: An Interview with Bartha Maria Knoppers

scientific article published on 01 October 2019

From banking to international governance: fostering innovation in stem cell research

scientific article

From genomic databases to translation: a call to action

scientific article

From the principles of genomic data sharing to the practices of data access committees

scientific article

From tissues to genomes

scientific article published on 7 August 2013

GA4GH: International policies and standards for data sharing across genomic research and healthcare

scientific article published on 10 November 2021

Genetic choices: a paradigm for prospective international ethics?

scientific article published in August 1994

Genetic database software as medical devices

Genetic diagnosis of embryos: clear explanation, not rhetoric, is needed

scientific article published on 17 August 2009

Genetic information and life insurance: a 'real' risk?

scientific article

Genetic information and the family: are we our brother's keeper?

scientific article published in February 2002

Genetic information and the law: constraints, liability and rights

scientific article

Genetic predisposition to cancer--issues to consider

scientific article published on February 1996

Genetic testing, legal capacity and adolescents.

scientific article published in January 1998

Genetic testing, physicians and the law: will the tortoise ever catch up with the hare?

scientific article published on 01 January 2010

Genetic testing: a comparative view

scientific article published on 01 January 1993

Genetically Enhanced Minors: Whose Responsibility?

journal article; published in The American Journal of Bioethics in 2018

Geneticism and Germ Line: Between Courage and Caution ⬇️

journal article from 'Politics and the Life Sciences' published in 1998

Genome-based newborn screening: a conceptual analysis of the best interests of the child standard

scientific article published on 03 September 2015

Genome-wide detection and characterization of positive selection in human populations

scientific article

Genome-wide sequencing in acutely ill infants: genomic medicine's critical application?

scientific article published on 12 June 2018

Genomic Sequencing Capacity, Data Retention, and Personal Access to Raw Data in Europe

scientific article published on 06 May 2020

Genomic cloud computing: legal and ethical points to consider

scientific article

Genomic databases access agreements: legal validity and possible sanctions

scientific article published on 25 June 2011

Genomic medicine: considerations for health professionals and the public

scientific article

Genomics and policymaking: from static models to complex systems?

scientific article published on 28 February 2009

Genomics: data sharing needs an international code of conduct

scientific article published on 01 February 2020

Genomics: from persons to populations and back again

scientific article published on 01 October 2013

Genotype-driven recruitment: a strategy whose time has come?

scientific article

Geolocalisation of athletes for out-of-competition drug testing: ethical considerations. Position statement by the WADA Ethics Panel.

scientific article

Governing stem cell banks and registries: emerging issues.

scientific article published on 25 May 2009

Harmonised consent in international research consortia: an impossible dream?

scientific article published on 15 December 2011

Health privacy in genetic research

scientific article published on 01 September 2009

Health professionals' perspectives on breast cancer risk stratification: understanding evaluation of risk versus screening for disease

article

Heritable Genome Editing: Who Speaks for "Future" Children?

scientific article published on 01 October 2019

How Can We Not Waste Legacy Genomic Research Data?

scientific article published on 08 May 2020

How mutually recognizable is mutual recognition? An international terminology index of research ethics review policies in the USA, Canada, UK and Australia

article

How to ensure the Human Cell Atlas benefits humanity

scientific article published on 3 May 2022

How to fix the GDPR's frustration of global biomedical research

scientific article published on 01 October 2020

Human gene editing: revisiting Canadian policy.

scientific article published on 5 January 2017

Human genetic research, DNA banking and consent: a question of 'form'?

scientific article

Human genetic research: emerging trends in ethics

scientific article

Human genomic databases: a global public good?

scientific article

INTRODUCTION: From the Right to Know to the Right Not to Know

scientific article published in March 2014

INTRODUCTION: Harmonizing Privacy Laws to Enable International Biobank Research

scientific article published on December 2015

Identifiability and privacy in pluripotent stem cell research

scientific article

Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons

scientific article published on 01 March 2019

Improving clinical trial sampling for future research - an international approach: outcomes and next steps from the DIA future use sampling workshop 2011.

scientific article published in January 2013

Informed Consent in Genetics

article

Intellectual property rights in publicly funded biobanks: much ado about nothing?

scientific article published on 01 April 2011

International Biobanking Summit V: Harmonizing Privacy Laws to Enable International Biobank Research.

scientific article

International Charter of principles for sharing bio-specimens and data

scientific article

International Charter of principles for sharing bio-specimens and data.

scientific article

International Cooperation to Enable the Diagnosis of All Rare Genetic Diseases

scientific article published on May 2017

International ethics harmonization and the global alliance for genomics and health

scientific article published on 27 February 2014

International initiatives

scientific article published on 01 January 2002

International mHealth Research: Old Tools and New Challenges

scientific article published on 01 March 2020

International network of cancer genome projects

scientific article

International normative perspectives on the return of individual research results and incidental findings in genomic biobanks

scientific article published on 16 February 2012

Intrafamilial disclosure of risk for hereditary breast and ovarian cancer: points to consider

scientific article published on 29 December 2012

Introduction: return of research results: how should research results be handled?

scientific article published on 01 January 2011

Is rigorous retrospective harmonization possible? Application of the DataSHaPER approach across 53 large studies

scientific article

Key Implications of Data Sharing in Pediatric Genomics

article by Vasiliki Rahimzadeh et al published 1 May 2018 in JAMA Pediatrics

Legal and Ethical Challenges of International Direct-to-Participant Genomic Research: Conclusions and Recommendations

scientific article published on 01 December 2019

Legal and ethical approaches to stem cell and cloning research: a comparative analysis of policies in Latin America, Asia, and Africa

scientific article

Legal approaches regarding health-care decisions involving minors: implications for next-generation sequencing

scientific article published on 15 June 2016

Legal approaches regarding health-care decisions involving minors: implications for next-generation sequencing

scientific article published on May 2017

Legal aspects of genetic databases for international biomedical research: the example of the International Cancer Genome Consortium (ICGC).

scientific article published on July 2012

Legal aspects of genetics, work and insurance in North America and Europe.

scientific article published in June 1996

Legal regulation of cancer surveillance: Canadian and international perspectives

scientific article

Letter: Relearning the 3 R's? Reinterpretation, recontact, and return of genetic variants

scientific article published on 11 April 2019

Life insurance: genomic stratification and risk classification

scientific article published on 16 October 2013

Locus-specific databases: from ethical principles to practice

scientific article

Longitudinal Health Studies: Secondary Uses Serving the Future

Maelstrom Research guidelines for rigorous retrospective data harmonization

scientific article

Managing incidental findings and research results in genomic research involving biobanks and archived data sets

scientific article

Mind the gap: policy approaches to embryonic stem cell and cloning research in 50 countries.

scientific article published in April 2006

Mitochondrial Replacement Therapy: The Road to the Clinic in Canada

scientific article

Model consent clauses for rare disease research

scientific article published on 01 August 2019

Modeling consent in the time of COVID-19

scientific article published on 01 January 2020

Monetary payments for the procurement of oocytes for stem cell research: In search of ethical and political consistency

scientific article published on 18 September 2007

Nature, nurture and exposure: Connecting biobank data with geographic data could yield public and individual health benefits, but risks to human rights need to be assessed

scientific article

Neuroethics, new ethics?

scientific article published in March 2005

Newborn genetic screening: ethical and social considerations for the nineties.

scientific article published in January 1991

Next-Generation Sequencing and the Return of Results

scientific article published on 6 September 2016

Nutriproteomics and Proteogenomics: Cultivating Two Novel Hybrid Fields of Personalized Medicine with Added Societal Value

scientific article published on December 2010

Of Screening, Stratification, and Scores

Of biotechnology and man.

scientific article published in January 2004

Of genomics and public health: Building public "goods"?

scientific article published on November 2005

Of the Rights and Best Interests of Future Generations

scientific article published on 01 August 2020

One size does not fit all: toward "upstream ethics"?

scientific article published in June 2010

Oocyte donation for stem cell research.

scientific article published in April 2007

Open science and community norms ⬇️

scientific article published in June 2012

Our social genome?

scientific article published on 30 April 2007

Overcoming barriers to facilitate the regulation of multi-centre regenerative medicine clinical trials

scientific article published on 8 November 2018

Oversight of Genomic Data Sharing: What Roles for Ethics and Data Access Committees?

scientific article

Oversight of human inheritable genome modification

scientific article published on 01 May 2015

Paediatric biobanks: what makes them so unique?

Paediatric research and the communication of not-so incidental findings

scientific article

Pandemics, privacy, and public health research

scientific article published on 26 June 2020

Parental Access to Children's Raw Genomic Data in Canada: Legal Rights and Professional Responsibility

publication published on 31 March 2021

Partnering in oncogenetic research--the INHERIT BRCAs experience: opportunities and challenges

scientific article

Pediatric research 'personalized'? International perspectives on the return of results

scientific article published on 01 January 2013

Personalized medicine and access to health care: potential for inequitable access?

scientific article published on 11 July 2012

Pharmacogenomic data sample collection and storage: ethical issues and policy approaches

scientific article

Physician recruitment of patients to non-therapeutic oncology clinical trials: ethics revisited

scientific article published on 11 March 2013

Physicians, genetics and life insurance

scientific article published on April 2004

Picard Lecture in Health Law--1992. Human genetics: parental, professional and political responsibility.

scientific article

Point-of-Care Genetic Tests for Infectious Disease: Legal Considerations

scholarly article by Adrian Thorogood et al published 12 June 2014 in Current Pharmacogenomics and Personalized Medicine: the international journal for expert reviews in pharmacogenomics

Policies and strategies to facilitate secondary use of research data in the health sciences

scientific article

Policy and data-intensive scientific discovery in the beginning of the 21st century

scientific article

Policy forum: genetic technologies. Commercialization of genetic research and public policy.

scientific article published in December 1999

Population biobanking and international collaboration

scientific article published on January 2014

Population genetic testing for cancer susceptibility: founder mutations to genomes

scientific article

Population studies: return of research results and incidental findings Policy Statement

scientific article published on 11 July 2012

Power to the people: a wiki-governance model for biobanks

scientific article (publication date: 29 May 2012)

Pre-implantation Genetic Diagnosis: The Road Forward in Canada

article

Precision medicine: a matter of regulation or collaboration?

scientific article published on 22 October 2016

Preconception care and genetic risk: ethical issues

scientific article

Preimplantation genetic diagnosis: an overview of socio-ethical and legal considerations

scientific article

Prepublication data sharing

scientific article

Privacy-Preserving Linkage of Genomic and Clinical Data Sets

scientific article published on 30 July 2018

Public variant databases: liability?

scientific article published on 15 December 2016

Public-Private Partnerships in Cloud-Computing Services in the Context of Genomic Research

scientific article published on 20 January 2017

Publishing SNP genotypes of human embryonic stem cell lines: policy statement of the International Stem Cell Forum Ethics Working Party

scientific article (publication date: September 2011)

Quality, quantity and harmony: the DataSHaPER approach to integrating data across bioclinical studies

scientific article

Questioning the limits of genomic privacy

scientific article published on September 2012

RESEARCH ETHICS. Ethics review for international data-intensive research

scientific article

RMGA Statement of Principles on the Return of Research Results and Incidental Findings

Raising standards for global data-sharing-Response

scientific article published on 01 January 2021

Rare diseases and now rare data?

scientific article

Rare loss-of-function variants in type I IFN immunity genes are not associated with severe COVID-19

scientific article

Rationale for an integrated approach to genetic epidemiology.

scientific article

Rationale, design, and methods for Canadian alliance for healthy hearts and minds cohort study (CAHHM) - a Pan Canadian cohort study

scientific article

Recent advances in medically assisted conception: legal, ethical and social issues

scientific article published on January 1, 1991

Reciprocity and the Quest for Meaningful Disclosure

scientific article published on 01 May 2019

Recommendations for returning genomic incidental findings? We need to talk!

scientific article

Reconciling the biomedical data commons and the GDPR: three lessons from the EUCAN ELSI collaboratory

Reconsidering reproductive benefit through newborn screening: a systematic review of guidelines on preconception, prenatal and newborn screening

scientific article

Recontacting Pediatric Research Participants for Consent When They Reach the Age of Majority

Recruiting terminally ill patients into non-therapeutic oncology studies: views of health professionals

scientific article

Registered access: a 'Triple-A' approach

scientific article

Registered access: authorizing data access

scientific article published on 2 August 2018

Regulation of International Direct-to-Participant Genomic Research: Symposium Introduction

scientific article published on 01 December 2019

Regulation of stem cell-based therapies in Canada: current issues and concerns

scientific article published on 01 September 2012

Regulatory Landscape of International Direct-to-Participant (DTP) Genomic Research: Time to Untie the Gordian Knot?

scientific article published on 01 June 2019

Regulatory approaches to reproductive genetic testing

scientific article published on 23 September 2004

Reply to C Harling

scientific article published on 31 May 2017

Reporting results from whole-genome and whole-exome sequencing in clinical practice: a proposal for Canada?

scientific article published on 27 September 2013

Reproductive genetics: Canadian and European perspectives

scientific article

Reproductive technology and international mechanisms of protection of the human person.

scientific article published in March 1987

Research ethics and stem cells: Is it time to re-think current approaches to oversight?

scientific article

Research ethics recommendations for whole-genome research: consensus statement

scientific article

Research ethics. Children and population biobanks

scientific article published in August 2009

Research on Human Embryos and Reproductive Materials: Revisiting Canadian Law and Policy.

scientific article

Research priorities. ELSI 2.0 for genomics and society

scientific article

Responsible sharing of biomedical data and biospecimens via the "Automatable Discovery and Access Matrix" (ADA-M)

Retrospective access to data: the ENGAGE consent experience

scientific article

Return of "accurate" and "actionable" results: yes!

scientific article published in January 2009

Return of genetic testing results in the era of whole-genome sequencing

scientific article published on 04 August 2015

Return of individual genomic research results: are laws and policies keeping step?

scientific article published on 08 January 2019

Return of results: towards a lexicon?

scientific article published in January 2011

Return of whole-genome sequencing results in paediatric research: a statement of the P3G international paediatrics platform

scientific article published on 07 August 2013

Return of whole-genome sequencing results in paediatric research: a statement of the PG international paediatrics platform

Returning incidental findings from genetic research to children: views of parents of children affected by rare diseases

scientific article

Sampling populations of humans across the world: ELSI issues

scientific article published on 08 March 2012

Science and society: children and incompetent adults in genetic research: consent and safeguards

scientific article

Secondary Uses of Personal Data for Population Research.

scientific article published on 15 April 2009

Serious genetic disorders: can or should they be defined?

scientific article published on February 2002

Sharing Clinical and Genomic Data on Cancer - The Need for Global Solutions

scientific article

Sharing and Safeguarding Pediatric Data

scientific article published on 20 June 2022

Sharing health-related data: a privacy test?

scientific article

Should physicians warn patients' relatives of genetic risks?

scientific article

Special Issue - From Biobanks to the Clinic

scientific article

Stability of Attitudes to the Ethical Issues Raised by the Return of Incidental Genomic Research Findings in Children: A Follow-Up Study

scientific article published on 10 September 2015

Statement of principles on the return of research results and incidental findings in paediatric research: a multi-site consultative process

Steering vaccinomics innovations with anticipatory governance and participatory foresight

scientific article published on 17 August 2011

Stem cell banking: between traceability and identifiability ⬇️

scientific article published on October 5, 2010

Stem cell charter

scientific article published in January 2010

Stem cell research ethics: consensus statement on emerging issues

scientific article published on October 2007

Stem cell research funding policies and dynamic innovation: a survey of open access and commercialization requirements

scientific article

Storing newborn blood spots: modern controversies

scientific article published on 01 January 2004

Streamlining ethical review of data intensive research

scientific article (publication date: 2 August 2016)

Streamlining ethics review for international health research

scientific article published in 2022

Streamlining review of research involving humans: Canadian models

scientific article published on 3 June 2015

Substitute consent to data sharing: a way forward for international dementia research?

scientific article published on 10 January 2017

Sustained interaction: the new normal for stem cell repositories?

scientific article

The "legitimization" of artificial insemination: promise or problem?

scientific article published on 01 April 1978

The 'serious' factor in germline modification

scientific article published on 20 July 2019

The Adoption of Cloud Computing in the Field of Genomics Research: The Influence of Ethical and Legal Issues

scientific article

The Babel of genetic data terminology.

scientific article published in August 2005

The Canadian Partnership for Tomorrow Project: a pan-Canadian platform for research on chronic disease prevention.

scientific article published in June 2018

The Canadian Partnership for Tomorrow Project: building a pan-Canadian research platform for disease prevention

scientific article

The Genetic Family as Patient?

scientific article published on 01 June 2020

The Genomic Commons

scientific article published on 25 January 2018

The HUGO ethics committee: six innovative statements

scientific article published on 01 November 2003

The Human Cell Atlas White Paper ⬇️

journal article from 'arXiv:1810.05192 [q-bio]' published in 2018

The Human Genome Organisation: towards next-generation ethics

scientific article published on 29 April 2013

The Human Genome Project: under an international ethical microscope

scientific article

The Human Right to Science and the Regulation of Human Germline Engineering

scientific article published on 01 June 2019

The Provision of Genetic Testing and Related Services in Quebec, Canada

scientific article published on 04 March 2020

The art and science of biobanking

scientific article published on 21 July 2011

The best interests of the child and the return of results in genetic research: international comparative perspectives

scientific article

The challenge of informed consent and return of results in translational genomics: empirical analysis and recommendations

scientific article

The changing landscape of human-animal chimera research: A Canadian regulatory perspective

scientific article published on 14 October 2009

The clinical application of genome-wide sequencing for monogenic diseases in Canada: Position Statement of the Canadian College of Medical Geneticists

scientific article published on 7 May 2015

The commercialization of genomic research in Canada

scientific article (publication date: November 2010)

The discombobulation of de-identification.

scientific article

The emergence of an ethical duty to disclose genetic research results: international perspectives

scientific article published on 26 July 2006

The ethical framing of personalized medicine

scientific article

The ethics weathervane

scientific article

The expansion of newborn screening: is reproductive benefit an appropriate pursuit?

The globalized gene.

scientific article published in January 2006

The human embryo: ethical and legal aspects.

scientific article

The impact of reporting magnetic resonance imaging incidental findings in the Canadian alliance for healthy hearts and minds cohort

The sIRB System: A Single Beacon of Progress in the Revised Common Rule?

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The use of fresh embryos in stem cell research: ethical and policy issues

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To disclose, or not to disclose? Context matters

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Toward a roadmap in global biobanking for health

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Toward better governance of human genomic data

scientific article published on 01 January 2021

Towards a data sharing Code of Conduct for international genomic research

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Towards a reconstruction of the "genetic family": new principles?

scientific article published in January 1998

Towards an ethics safe harbor for global biomedical research

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Trade-secret model: legal limitations

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Umbilical cord blood banking in Canada: socio-ethical and legal issues

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Umbilical cord blood stem cells: issues with private and public banks

scientific article published on 01 January 2004

Understanding umbilical cord blood banking: what women need to know before deciding

scientific article published on 29 May 2007

Unesco and population genetics

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Use of umbilical cord blood for stem cell research

Vaccines of the 21st century and vaccinomics: data-enabled science meets global health to spark collective action for vaccine innovation.

scientific article published on 17 August 2011

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?

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What are the most oppressing legal and ethical issues facing biorepositories and what are some strategies to address them?

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When information is the treatment? Precision medicine in healthcare

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Where Next for Genetics and Genomics?

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Whole genome sequencing resource identifies 18 new candidate genes for autism spectrum disorder

scientific article published on 6 March 2017

Whole-genome sequencing in health care. Recommendations of the European Society of Human Genetics

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Whole-genome sequencing in health care: recommendations of the European Society of Human Genetics

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Whole-genome sequencing in newborn screening programs

scientific article published on 01 March 2014

Whole-genome sequencing in newborn screening? A statement on the continued importance of targeted approaches in newborn screening programmes

scientific article published on 28 January 2015

Whose Commons? Data Protection as a Legal Limit of Open Science

scientific article published on 01 March 2019

Women’s Views on Multifactorial Breast Cancer Risk Assessment and Risk-Stratified Screening: A Population-Based Survey from Four Provinces in Canada

[Personalized medicine: equity and access]

scientific article published on 17 November 2014

noncc de principes du RMGA sur la communication des rrsultats de recherche et des ddcouvertes fortuites (RMGA Statement of Principles on the Return of Research Results and Incidental Findings)

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