Human Genome Project Information Archive
1990–2003

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).