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| July-August 2009 |
Dear Readers,
We are proud to announce that, as of June, our team has moved and will now be called the Centre of Genomics and Policy (CGP). Our Centre is affiliated with McGill University’s Faculty of Medicine, Department of Human Genetics. Because of our move, please note that the HumGen website has the following address: www.humgen.org. Also note that this change will not affect the content of the website. We will continue to provide you with the most up-to-date information regarding policies or legislation in the field of human genetics research. We are excited about this opportunity and look forward to the many new projects this will hold for us!
Co-Editors in Chief,
Karine Sénécal & Thu Minh Nguyen
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Direct to Consumer Genetic Tests. An Overview of Guidelines and Position Papers
Karine Sénécal, Pascal Borry, Heidi C. Howard, Denise Avard
Abstract: A growing number of private companies are offering, via the Internet, genetic tests "directly to consumers". These types of genetic "services" raise a number of ethical concerns, in particular, the validity and clinical utility of these tests and the fact that they are conducted without a system in place to ensure that consumers understand the scope, limits and the basic meaning of the results. This GenEdit analyzes existing normative documents which address genetic tests offered directly to consumers. It identifies three broad approaches regarding the normative framework that should govern such testing. The first approach generally advocates for the ban of these services, while the second appears to allow them, provided that certain conditions are met. The third approach falls somewhere in the middle. These normative documents were also studied for specific information related to the roles and responsibilities of healthcare professionals, pre-test information, consent and communication of results, as well as the importance of educating the public and healthcare professionals. It concludes by stressing the scientific, social and moral necessity for a consistent and adapted normative framework, and the need to initiate activities for public education and public consultation.
(2009) 7:1 GenEdit, 1-14
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United Nations (UN) - General Asssembly: Resolution 63/237 - Recognition of Sickle-Cell Anaemia as a Public Health Problem
New York -
December 22, 2008
Link: URL
Key Words: Access Info/Material - Beneficence - Community/Population - Education - Family - Public Health
United Nations (UN) - General Asssembly: Résolution 63/237 - La drépanocytose, problème de santé publique
New York -
December 18, 2008
Link: URL
Key Words: Access Info/Material - Beneficence - Community/Population - Education - Family - Public Health
European Society of Human Genetics (ESHG): Genetic Testing and Common Disorders - Proposed Recommendations of the European Society of Human Genetics
Seville -
May 18, 2009
Link: URL
Key Words: Access Info/Material - Biobank - Cancer - Carrier Status - Commercialization - Communication of Results - Consumer - Counseling (general) - Developing Country - Discrimination - Education - Employer/Employment - Family - Genetic Screening - Genetic Testing - Insurer/Insurance - Pharmacogenomics - Privacy - Professional - Psychosocial Aspects - Research - Storage
American College of Medical Genetics (ACMG): Position Statement on Importance of Residual Newborn Screening Dried Blood Spots
Bethesda -
April 29, 2009
Link: URL
Key Words: Beneficence - Community/Population - Confidentiality - Consent - Data - DNA - Genetic Screening - Minor/Child - Newborn - Privacy - Public Health - Storage
Australia/Government - National Health and Medical Research Council (NHMRC): Ethics and the Exchange, Sale of and Profit From Products Derived From Human Tissue: An Issues Paper - Public Consultation Draft
Canberra -
April 1, 2009
Link: URL
Key Words: Access Info/Material - Biobank - Commercialization - Confidentiality - DNA - Equity - Research - Tissue
French National Authority for Health: Le dépistage néonatal systématique de la mucoviscidose en France : États des lieux et perspectives après 5 ans de fonctionnement
St-Denis La Plaine -
January 1, 2009
Link: URL
Key Words: Access Info/Material - Beneficence - Carrier Status - Consent - Genetic Screening - Newborn - Socio-Economic Aspects - Waiver of Consent
Medical Technology Association of Australia: Inquiry Into Gene Patents
North Sydney -
March 1, 2009
Link: URL
Key Words: Commercialization - Genetic Testing - Intellectual Property - Patents
United States - Department of Health and Human Services (DHHS) - Office for Human Research Protections (OHRP): Guidance on the Genetic Information Nondiscrimination Act: Implications for Investigators and Institutional Review Boards
Rockville -
March 24, 2009
Link: URL
Key Words: Discrimination - Employer/Employment - Ethical Review - Ethics Review Board - Genetic Information - Insurer/Insurance - Researcher
United States - Department of Health and Human Services (DHHS) - Office for Human Research Protections (OHRP): Guidance on Research Involving Coded Private Information or Biological Specimens
Rockville -
October 16, 2008
Link: URL
Key Words: Biobank - Confidentiality - Consent - Data - Patient/Participant/Individual - Privacy - Research - Tissue - Waiver of Consent
Inclusión International: Declaración de Klaus Lachwitz- Presidente del Grupo de Trabajo de Derechos Humanos de Inclusion International- ante la audiencia pública- sobre la Revisión del Resumen de la Declaración Internacional sobre Datos Genéticos Humanos
Monaco - Febrero 28, 2003
Link: URL
Key Words:
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Biobank Summer School
Organized by: The Wellcome Trust and Public Population Project in Genomics (P3G)
Date:
July 1-5, 2009
Location: Hinxton, Cambridge
European Summer University - Technology and Health: Law and Ethics
Organized by: Faculté de droit de Namur
Date:
July 6-8, 2009
Location: Namur, Belgium
Information: http://www.crid.be/uee2009/home.html, Jean Herveg, jean.herveg@fundp.ac.be
The Age of Personalized Medicine: 5th International DNA Sampling Conference
Organized by: Health Law Institute, University of Alberta & CRDP Université de Montréal
Date:
September 16-18, 2009
Location: Banff (Alberta), Canada
Information: http://www.genomealberta.ca/APG/
Mapping the Genomic Era: Measurements and Meanings
Organized by: Cesagen on behalf of the ESRC Genomics Network
Date:
October 7-9, 2009
Location: Cardiff, United Kingdom
Beyond the Embryo: Transnational, Transdisciplinary and Translational Perspectives on Stem Cell Research
Organized by: Brocher foundation workshop
Date:
November 14-15, 2009
Location: Hermance (Lake of Geneva), Switzerland
Information: http://www.humgen.org/conference/en/
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Avard D., Bucci L.M., Burgess M.M., Kaye J., Heeney C., Farmer Y., Cambon-Thomsen A., "Public Health Genomics (PHG) and Public Participation: Points to Consider", (2009) 5:1 Journal of Public Deliberation, 1
Abstract: Large-scale population biobanks, which aim to collect biological tissues, personal health information,
and genomic data, are being introduced worldwide with the promise of increasing
knowledge on chronic diseases such as diabetes and heart disease. Experts recognize the need
for public participation to address the many social, legal and ethical complexities raised by the
introduction of biobanks for public health research. However many researchers and decision makers
struggle with how to promote public participation. This paper presents six issues that public
participation must address. These issues are then applied to three large scale genetic biobank
projects: CARTaGENE, Generation Scotland, and the United Kingdom Biobank. Finally, the efforts
of these biobanks will be compared to the British Columbia Biobank deliberation project,
which implemented a deliberative public participation experiment on biobanking.
Avard D., Stanton-Jean M., Woodgate R.L., Pullman D., Saginur R., "Research Ethics Boards and Challenges for Public Participation", (2009) 17:2-3 Health Law Review, 66
Abstract: [Not available]
Gold E.R., Knoppers B.M., "Biotechnology IP & Ethics", LexisNexis Canada Inc., 2009, 416 p.
Abstract: [Not available]
Joly Y., "Genetic Research Tools: Recent Trends and Future Outlook", Biotechnology IP & Ethics (Canada: LexisNexis Canada Inc., 2009)
Abstract: [Not available]
Knoppers B.M., "Biotechnology & Ethics", Biotechnology IP & Ethics (Canada: LexisNexis Canada Inc., 2009)
Abstract: [Not available]
Knoppers B.M., "Genomics and Policymaking: From Static Models to Complex Systems?", (2009) 125 Hum Genet, 375
Abstract: In the 20 years following the launching of the Human Genome Project, socio-ethical and legal responses to the policy issues raised have varied across jurisdictions. There seems, however, to be a move away from the more static, classical responses that characterized the first decade to a more epigenetic and complex one. The latter policy approach better reflects the dynamic nature of the science itself.
Knoppers B.M., "Challenges to Ethics Review in Health Research", (2009) 17:2 Health Law Review, 47
Abstract: [Not available]
Silverstein T., Joly Y., Harmsen E., Knoppers B.M. for the GRID (Gene Regulators in Disease) Project, "The Commercialization of Genomic Academic Research: Conflicting Interests?", Biotechnology IP & Ethics (Canada: LexisNexis Canada Inc., 2009)
Abstract: [Not available]
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