In this issue... 

1997 Santa Fe Highlights 
Patrinos Address 
Joint Genome Institute (JGI) Comes of Age 
JGI Sequencing 
JGI Informatics 
JGI and Bermuda Quality Sequence 
Grants Awarded for JGI Collaboration 
JGI Sequencing Clones 
Sequencing Strategies,Tools 
Gene-Discovery Resources 
Sequencing at NIH NHGRI 
Functional Genomics 
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 
NCGR Announcements 

Publications 
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 

Funding 
DOE ELSI 
NIH NHGRI 
NHGRI Initiates Mailing List 
U.S. Genome Research Funding 

Meeting Calendars & Acronyms 
Genome and Biotechnology Meetings 
Training Courses and Workshops 
Acronyms 

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.

The electronic form of the newsletter may be cited in the following style:
Human Genome Program, U.S. Department of Energy, Human Genome News (v9n3).