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

Sharing genomic research data through controlled-access databases has increased in recent years. Policymakers and funding organizations endorse genomic data sharing in order to optimize the use of public funds and to increase the statistical power of databases. Well-established data access arrangements and data access committees (DACs)responsible for reviewing and managing requests for access to genomic databasesare therefore central for implementing the policies and principles of data sharing. This article aims to investigate the functionality of DACs through the perspective of existing practices

Les notions d'autorisation et de consentement dans le contrat médical

While the terms « authorization » and « consent » are commonly used in juridical language, their definition end precise meaning are not acknowledged by the Quebec legislator. In fact the two terms are often used interchangeably. Both the legislative history of the first paragraph of article 20 of the Civil Code, an article which provides protective measures for the discerning minor entering into a medical contract, and the reforms suggested by the Civil Code Revision Office, demonstrate this confusion as to the proper juridical terms and as to the role of the parental and judicial sanction. The author maintains that the term « consent » is not applicable to the juridical role of the parent of judge

Human Dignity: In Danger of Banality - (The Case of Cloning)

Presented on February 11, 2003 at the Franklin Thomas Backus School of Law, Case Western Reserve University; sponsored by the Frederick K. Cox International Law Cente

Stem cell banking: between traceability and identifiability

Stem cell banks are increasingly seen as an essential resource of biological materials for both basic and translational research. Stem cell banks support transnational access to quality-controlled and ethically sourced stem cell lines from different origins and of varying grades. According to the Organisation for Economic Co-operation and Development, advances in regenerative medicine are leading to the development of a bioeconomy, 'a world where biotechnology contributes to a significant share of economic output'. Consequently, stem cell banks are destined to constitute a pillar of the bioeconomy in many countries. While certain ethical and legal concerns are specific to the nature of stem cells, stem cell banking could do well to examine the approaches fostered by tissue banking generally. Indeed, the past decade has seen a move to simplify and harmonize biological tissue and data banking so as to foster international interoperability. In particular, the issues of consent and of traceability illustrate not only commonalities but the opportunity for stem cell banking to appreciate the lessons learned in biobanking generally. 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

Genomic medicine: considerations for health professionals and the public

Advances in human genomics are ushering in a new era of predictive, preventative and personalized approaches to medicine. However, as the integration of genomic medicine progresses, the health community has a responsibility to communicate to the public the risks and challenges of genetic information. A possible knowledge transfer framework is outlined as a means to bridge the practical uses of genetics within various ethical, social and economic contexts. Tools and resources are needed to help clinicians understand genetic risks and help them inform the public appropriately and effectively

From Banking to International Governance: Fostering Innovation in Stem Cell Research

Stem cell banks are increasingly recognized as an essential resource of biological materials for both basic and translational stem cell research. By providing transnational access to quality controlled and ethically sourced stem cell lines, stem cell banks seek to foster international collaboration and innovation. However, given that national stem cell banks operate under different policy, regulatory and commercial frameworks, the transnational sharing of stem cell materials and data can be complicating. This paper will provide an overview of the most pressing challenges regarding the governance of stem cell banks, and the difficulties in designing regulatory and commercial frameworks that foster stem cell research. 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

Mind the Gap : Policy Approaches to Embryonic Stem Cell and Cloning Research in 50 Countries

[À l'origine dans / Was originally part of : CRDP - Droit, biotechnologie et rapport au milieu

Warning Patients’ Relatives of Genetic Risks: Policy Approaches

[À l'origine dans / Was originally part of : CRDP - Droit, biotechnologie et rapport au milieu]As an increasing number of genetic tests for specific early- and late-onset disorders move from research to the clinical setting, health care professionals are faced with new challenges or, alternatively, with novel twists on age-old ethical dilemmas. A finding that an individual carries a deleterious mutation can indicate that his or her relatives are at an increased risk of being affected by the same genetic disorder

The Legal Framing of Computerized Processing of Health Data : A European and Canadian Perspective

[À l'origine dans / Was originally part of : CRDP - Droit, biotechnologie et rapport au milieu]The use of information and communication technologies in the health and social service sectors, and the development of multi-centred and international research networks present many benefits for society: for example, better follow-up on an individual’s states of health, better quality of care, better control of expenses, and better communication between healthcare professionals. However, this approach raises issues relative to the protection of privacy: more specifically, to the processing of individual health information