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List of works by Yann Joly

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

scientific article

A proposal for an inclusive working definition of genetic discrimination to promote a more coherent debate

scientific article published on 24 June 2024

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

scientific article (publication date: March 2014)

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

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

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

scientific article published on 10 July 2018

Addressing Privacy Concerns in Sharing Viral Sequences and Minimum Contextual Data in a Public Repository During the COVID-19 Pandemic

scientific article published in 2022

Addressing cancer family history at the end of life: How frequent, relevant, and feasible is it? A survey of palliative care providers

scientific article published on 26 April 2019

An ethical and legal overview of pharmacogenomics: perspectives and issues.

scientific article published on December 2008

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

scientific article

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 on January 1, 2012

Benefits and barriers in the design of harmonized access agreements for international data sharing

scientific article published on 02 December 2019

Breast Cancer Risk Estimation and Personal Insurance: A Qualitative Study Presenting Perspectives from Canadian Patients and Decision Makers

scientific article published on 21 September 2017

Clinical exome sequencing in France and Quebec: what are the challenges? What does the future hold?

article

Commercial Opportunities and Ethical Pitfalls in Personalized Medicine: A Myriad of Reasons to Revisit the Myriad Genetics Saga ⬇️

scientific article published on June 1, 2013

Commercialization versus open science: Making sense of the message(s) in the bottle

scientific article published in 2012

Communicating science: epigenetics in the spotlight

scientific article published on 18 November 2020

Comparative Approaches to Genetic Discrimination: Chasing Shadows?

scientific article published on 29 March 2017

Controlled Access under Review: Improving the Governance of Genomic Data Access

scientific article

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

Country Reports

scientific article published on 01 December 2019

Currents in Contemporary Bioethics: Open Access as Benefit Sharing? The Example of Publicly Funded Large-Scale Genomic Databases ⬇️

scientific article published on January 1, 2012

Currents in contemporary ethics. The tuberculosis scare in retrospect

scientific article published on 01 January 2007

DNA Testing for Family Reunification in Canada: Points to Consider

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)

Diagnostic testing for vaccinomics: is the regulatory approval framework adequate? A comparison of Canada, the United States, and Europe

scientific article published on 05 July 2011

Disease Resistance and the Definition of Genetic Enhancement

scientific article published on 10 April 2017

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

scientific article published on 01 December 2020

Epigenetic Discrimination: Emerging Applications of Epigenetics Pointing to the Limitations of Policies Against Genetic Discrimination.

scientific article published on 8 June 2018

Epigenetics ELSI: Darker Than You Think?

scientific article

Epigenetics, ethics, law and society: A multidisciplinary review of descriptive, instrumental, dialectical and reflexive analyses

scientific article published on 01 August 2019

Epigenome data release: a participant-centered approach to privacy protection

scientific article

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

scientific article published on 27 February 2018

Establishing the International Genetic Discrimination Observatory

scientific article published on 23 March 2020

Ethical issues of CRISPR technology and gene editing through the lens of solidarity

scientific article published on 23 February 2017

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

Evolving data access policy: The Canadian context

scientific article

Fair Shares and Sharing Fairly: A Survey of Public Views on Open Science, Informed Consent and Participatory Research in Biobanking

scientific article

Falling giants and the rise of gene editing: ethics, private interests and the public good

scientific article published on 29 August 2017

Forward Look: Tenth Anniversary of the Human Genome Sequence and 21 Century Postgenomics Global Health - A Close Up on Africa and Women's Health

scientific article published on September 2011

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

scientific article published on 10 November 2021

Genetic discrimination and life insurance: a systematic review of the evidence

scientific article

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

scientific article

Genetics and Personal Insurance: the Perspectives of Canadian Cancer Genetic Counselors

scientific article

Genomic cloud computing: legal and ethical points to consider

scientific article

Genomic databases access agreements: legal validity and possible sanctions ⬇️

scientific article published on June 25, 2011

Genomics for All: International Open Science Genomics Projects and Capacity Building in the Developing World

Genomics: data sharing needs an international code of conduct

scientific article published on 01 February 2020

Harm, hype and evidence: ELSI research and policy guidance

scientific article published on 26 March 2013

Improved understanding of genetic and genomic influences on drug disposition and action : implications for children

scientific article published on January 2008

Incidental Findings in Data-Intensive Postgenomics Science and Legal Liability of Clinician–Researchers: Ready for Vaccinomics? ⬇️

scientific article published on July 5, 2011

Integrating artificial intelligence into health care through data access: can the GDPR act as a beacon for policymakers?

scientific article published on 16 September 2019

Integrating hereditary breast and ovarian cancer genetic counselling and testing into mainstream clinical practice: Legal and ethical challenges

scientific article published in 2022

Integrating precision cancer medicine into healthcare-policy, practice, and research challenges

scientific article published on 24 October 2016

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

scientific article published on 01 April 2011

International network of cancer genome projects

scientific article

Introduction: the why and whither of genomic data sharing

Is it research or is it clinical? Revisiting an old frontier through the lens of next-generation sequencing technologies

scientific article published on 25 April 2018

Issues related to family history of cancer at the end of life: a palliative care providers' survey.

scientific article

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

scientific article published on 01 December 2019

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

scientific article published on July 2012

Life insurance: genomic stratification and risk classification

scientific article published on 16 October 2013

Locating Biobanks in the Canadian Privacy Maze

scientific article published on March 2016

Looking Beyond GINA: Policy Approaches to Address Genetic Discrimination

scientific article published on 21 January 2020

Measuring the performance of international genomics research projects in fostering genomic capacity in the developing world ⬇️

journal article from 'New Genetics and Society' published in 2017

Modeling consent in the time of COVID-19

scientific article published on 01 January 2020

Non-invasive Prenatal Testing and the Unveiling of an Impaired Translation Process

scientific article published on 17 October 2016

Open biotechnology: licenses needed

scientific article published on 01 May 2010

Open science and community norms ⬇️

scientific article published in June 2012

Open science versus commercialization: a modern research conflict? ⬇️

scientific article published on February 27, 2012

Opportunities and challenges provided by cloud repositories for bioinformatics-enabled drug discovery

scientific article published on September 2014

Our social genome?

scientific article published on 30 April 2007

Overcoming Biases Together: Normative Stakes of Interdisciplinarity in Bioethics

scientific article published on 01 January 2020

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

scientific article

Physicians, genetics and life insurance

scientific article published on April 2004

Points-to-consider on the return of results in epigenetic research

Policy recommendations for addressing privacy challenges associated with cell-based research and interventions

scientific article published on 03 February 2014

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

scientific article (publication date: 29 May 2012)

Prepublication data sharing

scientific article

Privacy and Biobanking in China: A Case of Policy in Transition

scientific article published on December 2015

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

scientific article published on 20 January 2017

Reflections on the cost of "low-cost" whole genome sequencing: framing the health policy debate

scientific article (publication date: November 2013)

Regulatory approval for new pharmacogenomic tests: a comparative overview

scientific article published on January 2011

Researcher perspectives on ethics considerations in epigenetics: an international survey

scientific article published in 2022

Return of research results: general principles and international perspectives

scientific article

Risk of re-identification of epigenetic methylation data: a more nuanced response is needed

scientific article

Selling direct-to-consumer epigenetic tests: are we ready?

scientific article published on 28 January 2020

Sharing genetic information online: an exploration of GINA's 2.0 frontier

scientific article published in January 2014

South Korea: in the midst of a privacy reform centered on data sharing

scientific article published on 18 August 2018

Statement on bioinformatics and capturing the benefits of genome sequencing for society

scientific article published on 29 May 2019

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

scientific article

Streamlining ethics review for international health research

scientific article published in 2022

Survey of palliative care providers' needs, perceived roles, and ethical concerns about addressing cancer family history at the end of life

scientific article published on 25 August 2020

The European Union's Adequacy Approach to Privacy and International Data Sharing in Health Research

scientific article

The International Cancer Genome Consortium's evolving data-protection policies

scientific article published in June 2014

The Role of Whole Genome and Whole Exome Sequencing in Preventive Genomic Sequencing Programs

scientific article published in January 2015

The commercialization of genomic research in Canada

scientific article (publication date: November 2010)

The communication of pharmacogenetic research results: participants weigh in on their informational needs in a pilot study

scientific article published on March 21, 2011

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 stem cell research environment: a patchwork of patchworks

scientific article published on 27 May 2009

Towards an Ecology of Collective Innovation: Human Variome Project (HVP), Rare Disease Consortium for Autosomal Loci (RaDiCAL) and Data-Enabled Life Sciences Alliance (DELSA)

scientific article (publication date: December 2011)

Trade-secret model: legal limitations

scientific article

Unsolved challenges of clinical whole-exome sequencing: a systematic literature review of end-users' views

scientific article

What do cancer patients' relatives think about addressing cancer family history and performing genetic testing in palliative care?

scientific article published on 16 September 2019

[Open source biotechnology: synopsis of a meeting of two revolutions]

scientific article published on 01 November 2009

[Personalized medicine: equity and access]

scientific article published on 17 November 2014

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