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| July-August 2010 |
Dear Readers,
For this month's GenInfo, we are delighted to announce the publication of our new editorial entitled: "Intrafamilial Disclosure of Genetic Risk Information for Hereditary Breast Cancer: A Communications Framework?"
Presently, there is little guidance for health care professionals regarding intrafamilial communication of risk to hereditary breast cancer. There is also a lack of harmonization between recommendations from different non-governmental organizations. This editorial provides an overview of national and international norms that address intrafamilial communication and underlines important issues that may serve to develop a framework for proper communication.
Happy Reading!
Thu Minh Nguyen & Ma'n H. Zawati
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Intrafamilial Disclosure of Genetic Risk Information for Hereditary Breast Cancer: A Communications Framework?
Black L., Glendon G., Avard D.
Abstract: There is currently little guidance for health professionals regarding intrafamilial communication of genetic risk for hereditary breast cancer caused by a mutation in the BRCA 1 or 2 genes. A number of national laws address risk communication, but virtually none address intrafamilial communication in a meaningful way. Non-governmental bodies have, to various extents, noted or addressed intrafamilial communication, but there is no harmonization. Importantly, basic considerations are not well-developed, including (i) who is the family, (ii) what is genetic information, and (iii) how is the obligation or responsibility to communicate genetic information characterized. If genetic risk information is to be viewed as something more than "individual", frameworks must be developed to aid health professionals and patients in ensuring that others in the family who need the information receive it.
(2010) 8:2 GenEdit, 1-6
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World Health Organization (WHO): Birth Defects (Sixty-Third World Health Assembly, Resolution WHA63.17)
Geneva - May 21, 2010
Link: URL
Key Words: Community/Population - Disability - Education - Genetic Testing - Governance - Minor/Child - Newborn - Prenatal - Professional - Public Health - Woman/Maternity
World Health Organization (WHO): Human organ and tissue transplantation (Sixty-Third World Assembly, Resolution WHA63.22)
Geneva - May 21, 2010
Link: URL
Key Words: Community/Population - Compensation for Participation - Deceased - Dignity - Donor - Governance - Professional - Tissue
European Medicines Agency: Guideline on the use of pharmacogenetic methodologies in the pharmacokinetic evaluation of medicinal products (Draft)
London - April 22, 2010
Link: URL
Key Words: Pharmacogenomics
Australia/Government - National Health and Medical Research Council (NHMRC): Medical Genetic Testing: Information for Health Professionals
Canberra -
April 1, 2010
Link: URL
Key Words: Carrier Status - Communication of Results - Confidentiality - Counseling (general) - Data - DNA - Employer/Employment - Family - Genetic Screening - Genetic Testing - Insurer/Insurance - Multiplex Testing - Patient/Participant/Individual - Professional - Standard of Care - State
Health Canada and the Public Health Agency of Canada's Research Ethics Board: Appendix H - Consent form for genetic testing
Ottawa -
January 1, 2009
Link: URL
Key Words: Adult - Commercialization - Communication of Results - Confidentiality - Consent - Data - DNA - Ethics Review Board - Genetic Screening - Genetic Testing - Recruitment - Research - Storage
Health Canada and the Public Health Agency of Canada's Research Ethics Board: Appendix G - Child's Assent (Consent form for participants under 16 years of age, 18 years of age in Quebec)
Ottawa -
March 1, 2010
Link: URL
Key Words: Access Info/Material - Assent/Dissent - Compensation for Participation - Confidentiality - Consent - Ethics Review Board - Minor/Child - Research
Health Canada and the Public Health Agency of Canada's Research Ethics Board: Appendix E - Template to obtain informed consent of individuals over 18 years of age
Ottawa -
March 1, 2010
Link: URL
Key Words: Access Info/Material - Adult - Assent/Dissent - Compensation for Participation - Confidentiality - Consent - Ethics Review Board - Minor/Child - Recruitment - Research - Right of Withdrawal
Health Canada and the Public Health Agency of Canada's Research Ethics Board: Annexe E - Modèle de consentement éclairé des personnes de plus de 18 ans
Ottawa -
March 1, 2010
Link: URL
Key Words: Access Info/Material - Adult - Assent/Dissent - Compensation for Participation - Confidentiality - Consent - Ethics Review Board - Minor/Child - Recruitment - Research - Right of Withdrawal
Health Canada and the Public Health Agency of Canada's Research Ethics Board: Future Research Studies Participant Information and Consent Form
Ottawa -
March 1, 2010
Link: URL
Key Words: Adult - Assent/Dissent - Confidentiality - Consent - Minor/Child - Recruitment - Research
National Academy of Sciences (NAS): Final Report of the National Academies’ Human Embryonic Stem Cell Research Advisory Committee and 2010 Amendments to the National Academies’ Guidelines for Human Embryonic Stem Cell Research
Washington -
May 26, 2010
Link: URL
Key Words: Autonomy - Biobank - Confidentiality - Consent - Databases - DNA - Donor - Education - Embryo - Embryos (created for research) - Ethical Review - Ethics Review Board - Foetus - Gamete - Governance - Liability - Privacy - Professional - Reproductive Cloning - Research - Researcher - Right of Withdrawal - Stem Cell - Storage - Surplus Embryos - Therapeutic Cloning - Tissue
National Society of Genetic Counselors (NSGC): Statement from the National Society of Genetic Counselors Regarding Personal Genetic Testing Kits Available Through Retail Pharmacies
Wallingford -
May 11, 2010
Link: URL
Key Words: Commercialization - Communication of Results - Consumer - Counseling (general) - Counseling (Post-test) - Counseling (Pre-test) - DNA - Education - Follow-up - Genetic Testing - Psychosocial Aspects
National Society of Genetic Counselors (NSGC): Position Statement - Reproductive Freedom
Wallingford -
January 1, 2010
Link: URL
Key Words: Autonomy - Consent - Counseling (general) - Discrimination - Foetus - Genetic Screening - Genetic Testing - Man/Paternity - Prenatal - Professional - Woman/Maternity
Personalized Medicine Coalition (PMC): Comments on Development of Companion Diagnostics and the April 2005 Food and Drug Administration (“FDA”) Drug-Diagnostic Co-Development Concept Paper
Washington DC - December 9, 2009
Link: URL
Key Words: Pharmacogenomics
PHG Foundation: Genomic Medicine - An Independent Response to the House of Lords Science and Technology Committee Report
Cambridge -
May 1, 2010
Link: URL
Key Words: Access Info/Material - Consumer - Databases - Genetic Testing - Governance - Research - Researcher - Storage
United Kingdom Government/The House of Commons Science & Technology Committee: Bioengineering (Seventh Report of Session 2009-10)
London - March 25, 2010
Link: URL
Key Words: Embryo - Ethical Review - Ethics Review Board - Gene Therapy - Genetic Engineering - Germline Therapy - Governance - Patient/Participant/Individual - Research - Somatic Therapy - Stem Cell
United States/Senate: Genomics and Personalized Medicine Act of 2010
Washington DC - May 27, 2010
Link: URL
Key Words: Pharmacogenomics
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Science Communication Workshop
Organized by: European Science Communication Network
Date:
July 12-August 15, 2010
Location: Dubrovnik, Croatia
Information: http://www.esconet.org/Visitors/Welcome.html
Summer Institute 2010 Personalized Medicine: Friend or Foe of Cancer Health Disparities?
Organized by: Morehouse School of Medicine/Tuskeegee University/UAB Cancer Partnership
Date:
July 21-22, 2010
Location: Atlanta, Georgia USA
Tiny Babies, Large Questions: Ethical Issues in Prenatal and Neonatal Care - Sixth Annual Pediatric Bioethics Conference
Organized by: Treuman Katz Center for Pediatric Bioethics
Date:
July 23-24, 2010
Location: Seattle, Washington, United States
Information: http://www.seattlechildrens.org/research/initiatives/bioethics/events/pediatric-bioethics-conference/
Institut d'été en éthique clinique 2010
Organized by: Association québécoise en éthique clinique (AQEC)
Date:
August 26-27, 2010
Location: Quebec, Quebec, Canada
Information: http://www.aqec.ca/institut2010.htm
International Data Sharing Conference
Organized by: Center for Health, Law and Emerging Technologies (HeLEX)
Date:
September 20-22, 2010
Location: Oxford, United Kingdom
Information: http://helex.medsci.ox.ac.uk/data-sharing-international-conference-1
4th National Conference on Genomics and Public Health: Using Genomic Information to Improve Health Now and in the Future
Organized by: Center for Disease Control and Prevention
Date:
December 8-10, 2010
Location: Bethesda, Maryland, United States
Information: https://www.cmpinc.net/2010PHGConference/savethedate.aspx
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Knoppers B.M., "Consent to 'personal' genomics and privacy", (2010) 11:6 EMBO reports, 416
Abstract: [None Available]
Knoppers B.M., "Des enjeux éthiques à l'évaluation éthique", La malréglementation : Une éthique de la recherche est-elle possible et à quelles conditions? (Montréal: Les Presses de l'Université de Montréal, 2010)
Abstract: [None Available]
Knoppers B.M., Leroux T., Doucet H., Godard B., Laberge C., Stanton-Jean M., Fortin S., Cousineau J., Monardes C., Girard N., Levesque L., Durand C., Farmer Y., Dion-Labrie M., Bouthillier M.-E., Avard D., "Framing Genomics, Public Health Research and Policy: Points to Consider", (2010) 13:4 Public Health Genomics, 224
Abstract: Genetic information can be used to target interventions that
improve health and prevent disease. Indeed, the results of
population genomics research could be useful for public
health and national pandemic plans. Yet, firm scientific evidence originating from such research and the indicators of the role of health determinants, gene-gene and gene-environment interaction remain to be assessed and validated before being integrated into pandemic plans or public health
programmes. It is not clear what is the role of the State in research on the elucidation of the determinants of gene-gene and gene-environment interactions and how, when, and if
such data can be accessed and used for such planning. Over
a period of 3 years, we sought to address these questions by
gathering data and literature relevant to research in public
health genomics, preparing issues papers and, finally, consulting with stakeholders on a provisional ‘points to consider’ document at various times. Examining in turn the issues of privacy, State powers, stakeholder perceptions, and public participation, we propose in this article, for each of these themes, a series of recommendations aiming to provide guidance on the role of the State in the use of genomic information for public health research, prevention and planning.
Ozdemir V., Knoppers B.M., "One Size Does Not Fit All: Toward "Upstream Ethics"?", (2010) 10:6 AJOB, 42
Abstract: [None Available]
Tazzite A., Roky R., Avard D., "Les implications éthiques de la conservation des échantillons biologiques", (2009) 20:3 Journal international de bioéthique, 87
Abstract: [None Available]
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