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

This paper considers the tensions created in genomic research by public and private for-profit ideals. Our intent is to strengthen the public good at a time when doing science is strongly motivated by market possibilities and opportunities. Focusing on the emergence of gene editing, and in particular CRISPR, we consider how commercialisation encourages hype and hope—a sense that ...

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

Joly 1 0 Université Toulouse III Paul Sabatier and Inserm UMR 102, 37 allées Jules Guesde , F-31000, Toulouse , France 1 Center of Genomics and Policy, McGill University , 740 Dr. Penfield Avenue

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

Genetic discrimination in the context of genetic testing has been identified as a concern for symptomatic and asymptomatic individuals for more than three decades. Genetic counselors are often the health care professionals who discuss risks and benefits of genetic testing with patients, thereby making them most appropriate to address patient concerns about genetics and personal ...

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

Context Biobanks are important resources which enable large-scale genomic research with human samples and data, raising significant ethical concerns about how participants’ information is managed and shared. Three previous studies of the Canadian public’s opinion about these topics have been conducted. Building on those results, an online survey representing the first study of ...

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

In this letter to the editor, we respond to the recent publication by Philibert et al. Methylation array data can simultaneously identify individuals and convey protected health information: an unrecognized ethical concern (Clinical Epigenetics 2014, 6:28). Further discussion of the issues raised by the risk of re-identification of epigenetic methylation data is needed, and a more ...

DNA Testing for Family Reunification in Canada: Points to Consider

Law, University of Toronto, for critically reading the manuscript and for his helpful comments. Compliance with Ethical Standards Funding Fonds de Recherche Societe et Culture. Yann Joly. 2015-AN-186368 ... Fondation du Barreau du Quebec. 2013–2014 Grant Yann Joly. L’encadrement juridique des tests d’ADN dans le context du processus de parrainage des membres de la famille des immigrants Canadiens Open Access

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

Background Since the late 1980s, genetic discrimination has remained one of the major concerns associated with genetic research and clinical genetics. Europe has adopted a plethora of laws and policies, both at the regional and national levels, to prevent insurers from having access to genetic information for underwriting. Legislators from the United States and the United Kingdom ...

Harm, hype and evidence: ELSI research and policy guidance

There has been much investment in research on the ethical, legal and social issues (ELSI) associated with genetic and genomic research. This research should inform the development of the relevant policy. So far, much of the relevant policy - such as in the areas of patents, genetic testing and genetic discrimination - seems to be informed more by speculation of harm and anecdote ...

Stem Cell Research Funding Policies and Dynamic Innovation: A Survey of Open Access and Commercialization Requirements

This article compares and contrasts the pressures of both open access data sharing and commercialization policies in the context of publicly funded embryonic stem cell research (SCR). First, normative guidelines of international SCR organizations were examined. We then examined SCR funding guidelines and the project evaluation criteria of major funding organizations in the EU, the ...

Open science versus commercialization: a modern research conflict?

Background Efforts to improve research outcomes have resulted in genomic researchers being confronted with complex and seemingly contradictory instructions about how to perform their tasks. Over the past decade, there has been increasing pressure on university researchers to commercialize their work. Concurrently, they are encouraged to collaborate, share data and disseminate new ...

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

Large-scale epigenome mapping by the NIH Roadmap Epigenomics Project, the ENCODE Consortium and the International Human Epigenome Consortium (IHEC) produces genome-wide DNA methylation data at one base-pair resolution. We examine how such data can be made open-access while balancing appropriate interpretation and genomic privacy. We propose guidelines for data release that both ...

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

Biobanks are adopting various modes of public engagement to close the agency gap between participants and biobank builders. 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.

Reflections on the Cost of "Low-Cost" Whole Genome Sequencing: Framing the Health Policy Debate

The future clinical applications of whole genome sequencing come with speculation and enthusiasm but require careful consideration of the true system costs and health benefits of the clinical uses of this exciting technology.