The Human Genome Diversity Project: Ethical Problems and Solutions

The goal of the Human Genome Diversity Project (HGDP) is to provide a comprehensive study of genetic diversity across different human populations. Scientists working on the HGDP plan to collect samples from all 400 to 500 geographically isolated or culturally unique human populations that desire to participate in the project. Few people have questioned the scientific merits of the HGDP and its potential contribution to our understanding of human genetics, but the project has created a storm of moral, cultural, and political controversy during its brief existence. Opponents have argued that the HGDP smacks of racism, commercialism, exploitation, and cultural imperialism. Critics have also found fault with the informed consent process proposed by organizers of the HGDP. Opposition to the HGDP has succeeded in impeding (but not derailing) this project. The essay explores some of the key moral, political, and cultural issues raised by the HGDP and argues that the project should be implemented and should be funded, provided that researchers and organizers take steps to address the issues it raises.

[1]  I. Varekamp,et al.  The Ethics of Biomedical Research. An International Perspective , 2000 .

[2]  F. Collins,et al.  New goals for the U.S. Human Genome Project: 1998-2003. , 1998, Science.

[3]  D. Resnik.  The ethics of HIV research in developing nations. , 1998, Bioethics.

[4]  D. Murphey,et al.  The Biotech Century , 1998 .

[5]  D. Nelkin,et al.  Homo economicus: commercialization of body tissue in the age of biotechnology. , 1998, The Hastings Center report.

[6]  E. Juengst.  Groups as Gatekeepers to Genomic Research: Conceptually Confusing, Morally Hazardous, and Practically Useless , 1998, Kennedy Institute of Ethics journal.

[7]  F. Jackson.  Scientific limitations and ethical ramifications of a non-representative Human Genome Project: African American response , 1998, Science and engineering ethics.

[8]  Harding Rosalind M.,et al.  Human genome diversity—a Project? , 1998, Nature Genetics.

[9]  E. Pennisi.  NRC OKs Long-Delayed Survey of Human Genome Diversity , 1997, Science.

[10]  D. Resnik.  The Morality of Human Gene Patents , 1997, Kennedy Institute of Ethics journal.

[11]  B J Crigger,et al.  The "vampire project". , 1995, The Hastings Center report.

[12]  P. Kahn.  Genetic diversity project tries again. , 1994, Science.

[13]  M. Lock.  Interrogating the Human Diversity Genome Project. , 1994, Social science & medicine.

[14]  Claire Gilbert Foster,et al.  International ethical guidelines for biomedical research involving human subjects , 1994 .

[15]  G. K. Bhattacharyya,et al.  Statistics: Principles and Methods , 1994 .

[16]  W. T. Osborne.  The Ethical Symbiosis between Anthropologists and the Peoples They Study , 1993 .

[17]  E. Marshall.  NIH told to reconsider crime meeting. , 1993, Science.

[18]  K K Kidd,et al.  Human genome diversity initiative. , 1993, Human biology.

[19]  P. King.  Twenty years after. The legacy of the Tuskegee Syphilis Study. The dangers of difference. , 1992, The Hastings Center report.

[20]  C R Cantor,et al.  Call for a worldwide survey of human genetic diversity: a vanishing opportunity for the Human Genome Project. , 1991, Genomics.

[21]  R S Nicholson,et al.  On being a scientist. , 1989, Science.

[22]  Stephen Budiansky,et al.  Ethics in science , 1985, Nature.

[23]  A. Perl,et al.  Code of Ethics , 1963, Science.

[24]  R. Lewontin,et al.  Population and Evolutionary Genetics , 1999 .

[25]  Adam Novick.  Drumming in the Shadow of a Satellite Dish , 1997 .

[26]  R. Herrnstein,et al.  The Bell Curve , 1994 .

[27]  Robert F. Ladenson.  The dangers of difference , 1992 .

[28]  H. Richardson,et al.  President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. , 1982, United States code annotated. United States.

[29]  John R. Williams.  DECLARATION OF HELSINKI , 1964 .