In this issue...
Also available in pdf.
1997 Santa Fe Highlights
Joint Genome Institute (JGI) Comes of Age
JGI and Bermuda Quality Sequence
Grants Awarded for JGI Collaboration
JGI Sequencing Clones
Sequencing at NIH NHGRI
Data Surge Challenges Informaticists
Genome Annotation: Informatics Advances Needed for Age of Functional Genomics
ELSI: Rapid Progress Accelerates Societal Impact of Genome Research
1999 DOE HGP Meeting Set for California
Human Genome Project Administration
New 5-Year Goals, Project Midpoint
DOE, NIH Discuss Informatics
JASON Group Review
BER Genome Instrumentation Research
In the News
Private-Sector Sequencing Plan
Bang for the Buck: Government-Backed Research Underpins Potentially High Payoff Ventures
Palmisano Joins DOE OBER
DNA Files series to be on NPR
HUGO Addresses Sample Collection
Sickle Cell Mice May Lead to New Treatments
TIGR Sequencing 6 More Microbes
Tuberculosis Microbe Sequenced
C. Elegans Sequencing Nears Finish
HGMIS Website Restructured
cDNA Cloning Workshop Identifies Critical Issues
Survey Identifies Growing Need for Synchrotron Analyses
Report on Functional Consequences of Gene Expression
Book on Tuskegee Conference
Book Focuses on Biomarker Implications, Conference Proceedings
Genome Analysis Protocol Handbook
Software and the Internet
Mouse Genome Informatics Release 2.0
New System Identifies Polymorphisms
DOE Supports Web Site for 1997 AAAS Genome Symposium
Expressed Human Genome Database
NHGRI Initiates Mailing List
U.S. Genome Research Funding
Meeting Calendars & Acronyms
Genome and Biotechnology Meetings
Training Courses and Workshops
HGN archives and subscriptions
HGP Information home
HUGO Ethics Committee Statement Addresses Sample Collection, Sharing
In its February Statement on DNA Sampling: Control and Access, the international Human Genome Organisation's Ethics Committee addressed several ethical issues pertinent to sample collection and sharing in genetic research. The committee, which is made up of scientists, ethicists, and lawyers from ten countries, also confirmed its commitment to the principles of its March 1996 Statement on the Principled Conduct of Genetic Research.
Chaired by Bartha Knoppers (University of Montreal), the ethics group made the following recommendations regarding DNA sampling:
- Choices offered in the consent process should reflect the potential uses of the DNA sample and its information.
- Routine samples obtained during medical care may be used for research if there is general notification of such a policy, the patient has not objected, and the sample has been coded or anonymized.
- Research samples obtained with consent may be used for other research if the conditions in the statement above are met.
- Security mechanisms must be initiated to ensure respect for the choices made and the desired level of confidentiality.
- Special considerations should be made for immediate relatives, who should have access if there is a high risk of having or transmitting a serious disorder and if prevention or treatment is available.
- Stored samples may be destroyed at the request of the person if immediate relatives do not need access.
- Except as authorized by law, no disclosure of research participation or results should be made to institutional third parties without appropriate consent.
- International standardization of ethical requirements for control and access of DNA samples and information is essential.
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The electronic form of the newsletter may be cited in the following
Human Genome Program, U.S. Department of Energy,
Human Genome News (v9n3).