University of Minnesota

Human Genome Organisation; Ethical, Legal, and Social Issues Committee; Statement on the Principled Conduct of Genetics Research (1996).


HUGO Ethical, Legal, and Social Issues Committee Report to HUGO Council

Based on the Discussion Paper, "Ethical Issues in International Collaborative Research on the Human Genome: The HGP and the HGDP,"
Bartha Maria Knoppers, LL.D., Member HUGO-ELSI Committee; Marie Hirtle, LL.M. and Sébastien Lormeau, B.Sc., 1995.

The Human Genome Project (HGP), proposed in the 1980s and formally initiated in 1990, has as its specific goals identification of all human genes and sequencing of the entire genome. Completion of the HGP in the projected 15 years will provide a source book for biology and medicine. Yet, in this time frame, the function of all genes, singly and in concert, will not be known, nor will the worldwide variation in the genes have been defined.

The Human Genome Diversity Project (HGDP) is an international scientific endeavor that complements the HGP by examining the genomic variation of the human species, through analysis of DNA from populations, families, and individuals worldwide. The HGDP promises to help us understand the fundamental unity of humankind, human biological history, population movements, and susceptibility or resistance to various human diseases.

The HGP, the HGDP, and other genetic research have given rise to a number of concerns:

The Council of the Human Genome Organisation (HUGO) asked its Ethical, Legal and Social Issues Committee (HUGO-ELSI), comprising experts from a number of countries and disciplines, to provide guidance and procedures which would address these concerns and ensure that ethical standards are met as the HGP and the HGDP proceed.

The HUGO-ELSI Committee has based its recommendations on the following four principles:

  1. Recognition that the human genome is part of the common heritage of humanity;
  2. Adherence to international norms of human rights;
  3. Respect for the values, traditions, culture, and integrity of participants; and
  4. Acceptance and upholding of human dignity and freedom.
The HUGO-ELSI Committee recommends:

HUGO-ELSI Committee Members (March 1996)
Professor Kåre Berg
Professor Alex Capron
Professor Ruth F. Chadwick
The Honorable Justice Michael Kirby
Professor Bartha Maria Knoppers, Chairperson
Dr. Darryl R.J. Macer
Dr. Victor A. McKusick
Professor Benno Müller-Hill
Dr. Thomas H. Murray
Professor M.F. Niermeijer, Cochairperson
Professor Alain Pompidou
Professor Stefano Rodotà
Dr. Hiraku Takebe, Cochairperson
Dr. Nancy S. Wexler

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