HUMAN GENOME ORGANIZATION

The Human Genome Organization (HUGO) is an international society of elected members with an interest in the scientific, commercial, and societal impacts of research on the human genome. HUGO should not be confused with the Human Genome Project (HGP), a U.S. program founded in 1990 and funded by both the U.S. Department of Energy and the National Institutes of Health. HUGO serves as a vehicle for the international coordination of human genome research.

A group of forty-two scientists founded HUGO in September 1988 after a discussion spurred by molecular biologist and Nobel laureate Sydney Brenner (b. 1927) began in April of that year. In the same year the Department of Energy and the National Institutes of Health signed a memorandum of understanding to cooperate in support of human genomic research. An eighteen-member executive council leads the organization, but the complete membership forms a general assembly with ultimate control of the organization. Members of the organization also serve on a number of committees on particular topics, such as ethics and intellectual property rights. New members are elected annually after receiving nominations endorsed by at least five previous or current members.

The purposes of HUGO are to assist the international coordination of research on the human genome, coordinate and facilitate the exchange of data and bio-materials relevant to human genome research, and encourage public debate and provide information and advice on the scientific, ethical, social, legal, and commercial implications of human genome projects (McKusick 1989).

The HUGO Council and its committees have released a number of statements concerning societal impacts, including statements on patenting, cloning, gene therapy, and benefit sharing. In 1996 the HUGO Council approved the first of those statements: "Statement on the Principled Conduct of Genetics Research," which was written by the ethics committee the previous year (Human Genome Organization 1995). The statement includes a general set of recommendations to address concerns about genetic discrimination, information access, and genetic reductionism, among other issues. The recommendations broadly urge the scientific community to meet those concerns through self-oversight and better training.

In statements on patenting in 1995, 1997, and 2000 HUGO argued that expressed sequence tags (ESTs) and single nucleotide polymorphisms (SNPs) do not merit patent protection without detailed knowledge of the biological function of the sequence in question. This position contrasts with patent laws in the United States and Europe, which allow the patenting of those sequences. HUGO argues that the sequences can be found easily with modern genetics computing but that patent seekers cannot determine the utility of a sequence without doing much more research. HUGO believes that granting patents on ESTs or SNPs prematurely creates disincentives for genetics research.

With regard to cloning HUGO has suggested that no one should attempt reproductive cloning of a human by means of somatic cell nuclear transfer but that basic research using that technique or other cloning techniques and therapeutic cloning should be pursued (Human Genome Organization 1999). However, HUGO also has suggested that embryos should not be created for the purpose of genetic research.

HUGO's statement on gene therapy in 2001 supported the pursuit of somatic gene therapy with strong safeguards, including public oversight and review (HUGO Ethics Committee 2001). The appropriateness of germline therapy that would affect a patient's descendants should be discussed widely. The draft stresses the need for public involvement in setting the limits and ethical principles that should guide gene therapy.

HUGO provides an avenue for the scientific community to communicate its position on the ethical and societal implications of biotechnology research. The organization's international membership includes many preeminent researchers in the field. However, membership is voluntary and the organization has no ability to sanction members or enforce its policies. Its contributions to discussions of the ethical and societal implications of human genome research have been minimal. The organization has not made those issues an important part of its mission.

TIND SHEPPER RYEN

SEE ALSO Bioethics;Genethics.

BIBLIOGRAPHY

Human Genome Organization. (1995). "Statement on the Principled Conduct of Genetics Research." Eubios Journal of Asian and International Bioethics 6: 59–60.

Human Genome Organization. (1999). "Statement on Cloning." Eubios Journal of Asian and International Bioethics 9: 70.

Human Genome Organization Ethics Committee. (2001). "Statement on Gene Therapy Research." Eubios Journal of Asian and International Bioethics 11: 98–99.

McKusick, Victor A. (1989). "The Human Genome Organization: History, Purposes, and Membership." Genomics 5: 385–387.

INTERNET RESOURCES

Eubios Ethics Institute. Available from http://www.biol.tsukuba.ac.jp/3macer/index.html. This institute is run by one of the members of the HUGO Ethics Committee and contains many of the group's ethics statements.

Human Genome Organization. Available from http://www.hugo-international.org/. The official site of the organization.