Consent, commodification and benefit-sharing in genetic research

Dev World Bioeth. 2004 Dec;4(2):109-24. doi: 10.1111/j.1471-8731.2004.00087.x.

Abstract

The global value of the biotechnology industry is now estimated at 17 billion dollars, with over 1300 firms involved as of the year 2000.(2) It has been said that 'What we are witnessing is nothing less than a new kind of gold rush, and the territory is the body.' As in previous gold rushes, prospectors are flooding into unexplored and 'wide open' territories from all over the world, with possible ramifications for exploitation of Third World populations. These territories are also the Wild West of bioethics insofar as the law has very little hold on them: existing medical and patent law, such as the Moore and Chakrabarty cases, exert little control over powerful economic interests in both the United States and Europe. In the absence of a unified and consistent law on property in the body, the focus is increasingly on refining the consent approach to rights in human tissue and the human genome, with sensitive and promising developments from the Human Genetics Commission and the Department for International Development consultation on intellectual property. These developments incorporate the views of vulnerable genetic communities such as Native Americans or some Third World populations, and should be welcomed because they recognise the power imbalance between such groups and First World researchers or firms. However, they also highlight the continued tension about what is really wrong with commodifying human tissue or the human genome. Where's the injustice, and can it be solved by a more sophisticated consent procedure?

MeSH terms

  • Coercion
  • Commodification*
  • Developed Countries
  • Developing Countries*
  • Ethnic Groups / genetics*
  • Genetic Research / ethics*
  • Human Body*
  • Humans
  • Informed Consent / ethics*
  • Ownership
  • Patents as Topic / ethics
  • Research Subjects / economics
  • Social Justice
  • Tissue Donors
  • Vulnerable Populations*