Although scientific and commercial excitement about genomic biobanks has subsided since the biotech bust in 2000, they continue to fascinate life scientists, bioethicists, and politicians alike. Indeed, these assemblages of personal health information, human DNA, and heterogeneous capital have become and remain important events in the ethics and politics of the life sciences. For starters, they continue to reveal and produce the central scientific, technological, and economic paradigms so ascendant in biology today: genome, infotech, and market. Biobanks also illustrate what (...) might be called the new distributive politics of biomedical research. Within those politics, the commodification of persons – or at the very least, of their informational representations – has challenged the ontological, ethical, and political underpinnings of the social contract between researchers and their human research subjects. In brief, biobanks are unsettling relations between genes, tissue, medical records, and persons. But it is also clear that these relations are increasingly being restructured by new rights of control, access, exclusion, and use known as “property,” both material and intellectual. (shrink)

In this essay, the author focuses on an underlying theoretical issue which she believes seriously affects our collective response to the idea of group rights in the genetic-control context. That issue is to what extent are our responses to claims of group rights hampered by our bringing to the table a model which is structured to acknowledge only individual concerns? Put another way, to what extent are our objections to group rights in this context a product of our inability to (...) imagine the idea of group rights, rather than the product of truly substantive concerns? (shrink)

During the past 20 years, the importance of human genetic information has exploded. Whether sought for medical treatment, disease prediction studies, cultural studies, or the general study of human origins, human genetic information is now viewed as crucial for scientific research and general attempts at human understanding.With the importance of genetic information have come bitter battles over its control. The demonstrated power of human genetic information has moved the issue of its “ownership” from the realm of musty academic musings to (...) protracted political and legal battles among “source” individuals, researchers, commercial concerns, government agencies, and others. Whether collected through targeted scientific studies, “discarded” biological tissue, initial charitable bequest, or other means, genetic information and the biological materials in which it is contained have become the subject of protracted legal battles for control and intense social and ethical controversy. (shrink)

This article examines the intercultural context of issues related to genetic research on Native peoples. In particular, the article probes the disconnect between Western and indigenous concepts of property, ownership, and privacy, and examines the harms to Native peoples that may arise from unauthorized uses of blood and tissue samples or the information derived from such samples. The article concludes that existing legal and ethical frameworks are inadequate to address Native peoples' rights to their genetic resources and suggests an intercultural (...) framework for accommodation based on theories of intergroup equality and fundamental human rights. (shrink)

Our society currently faces many complex and perplexing issues related to biotechnology, including the need to define the outer boundaries of genetic research on human beings and the need to protect individual and group rights to human tissue and the knowledge gained from the study of that tissue. Scientists have increasingly become interested in studying so-called “population isolates” to discover the nature and location of genes that are unique to particular groups. Indigenous peoples are often targeted by scientists because “the (...) relative isolation of the communities ensures minimal gene flow.” Such studies raise a number of issues related to privacy rights, property rights, informed consent, and group rights versus individual rights. These issues recently came to light in a case brought by the Havasupai Tribe and its members over the use of blood samples, handprints, and genealogy information initially taken by researchers at Arizona State University for a diabetes project. These materials were then allegedly used by researchers at ASU and other institutions for a multitude of unauthorized purposes, including research into the frequency of mental health disorders and the origin of human populations. Consequently, the affected members sued for damages under several legal theories. However, underlying all of these claims was the allegation that this unauthorized use of genetic resources and data not only injured the individuals who gave samples, but also caused a collective harm to the Havasupai Tribe and the cultural and spiritual beliefs of its members. (shrink)

In his 21st-century explorer’s uniform, Nordiclooking Spencer Wells kneels alongside nearly naked, smaller, African hunters who sport bows and arrows. Featured on the National Geographic Web site, “Explorer-in-Residence” Wells hold a bachelor’s and doctorate degree in biology. He is also a filmmaker who both masterminded and hosted National Geographic’s 2002 documentary, The Journey of Man: A Genetic Odyssey, which explains to non-scientists a molecular anthropology narrative of how humans left Africa 60,000 years ago to populate the rest of the globe.In (...) his latest exploratory adventure, Wells is the project leader and spokesperson for the recently announced “Genographic Project,” a “landmark study of the human journey.” In April 2005, National Geographic and IBM, with funding from the Waitt Family Foundation, launched the Genographic Project as a five-year “research partnership” that aims to “trace the migratory history of the human species” and “map how the Earth was populated.”. (shrink)

In its quest to sample 100,000 “indigenous and traditional peoples,” the Genographic Project deploys five problematic narratives: that “we are all African”; that “genetic science can end racism”; that “indigenous peoples are vanishing”; that “we are all related”; and that Genographic “collaborates” with indigenous peoples. In so doing, Genographic perpetuates much critiqued, yet longstanding notions of race and colonial scientific practice.

This article compares three frameworks for legal regulation of the human body. Property law systematically favors those who use the body to create commercial products. Yet contract and privacy rights cannot compete with the property paradigm, which alone affords a complete bundle of rights enforceable against the whole world. In the face of researchers' property rights, the theoretical freedom to contract and the meager interest in privacy leave those who supply body parts vulnerable to exploitation.

The legal status of the human body is hotly contested, yet the law of the body remains in a state of confusion and chaos. Sometimes the body is treated as an object of property, sometimes it is dealt with under the rubric of contract, and sometimes it is not conceived as property at all, but rather as the subject of privacy rights. Which body of law should become the law of the body? This question is even more pressing in the (...) context of current biomedical research, which permits commodification and commercialization of the body by everyone except the person who provides the “raw materials.” The lack of property protection for tangible parts of the human body is in stark contrast to the extensive protection granted to intellectual property in the body in the form of patents upon human genes and cell lines. Moreover, even courts that reject ownership claims on the part of those who supply body parts appear willing to grant property rights to scientists, universities, and others who use those body parts to conduct research and create products. (shrink)

In the opening years of the 21st century, it became fashionable to describe the human genome as belonging to the common heritage of humanity. The United Nations, in its Universal Declaration on the Human Genome and Human Rights, now identifies the human genome as part of the common heritage, as does the international Human Genome Organization and the Council of Europe. The common heritage concept has played a prominent role in arguments against patenting the human genome or portions thereof. This (...) essay considers whether the common heritage designation will advance the political and legal goals of its proponents. (shrink)

This essay identifies two legal lineages underlying the common heritage concept, and applies each to the human genome. The essay notes some advantages and disadvantages of each approach, and argues that patenting of human genes would be allowable under either approach.

In this paper, the author questions whether the research ethics guidelines and procedures are robust enough to protect groups when conducting genetics research with socially identifiable populations, particularly with Native American groups. The author argues for a change in the federal guidelines in substance and procedures of conducting genetic research with socially identifiable groups.

The genetic revolution is well underway, with genetic research and knowledge expanding at an exponential rate. Much of the new genetics research is focused on population groups, and proponents of “population genomics” argue that such studies are necessary since genetic “variation” among human populations holds the most promise for technological innovations that can improve human health and lead to increased understanding of the origin of human populations. Population genomic research thus targets specific groups to discover variation that could lead to (...) knowledge about genetic disorders, possible cures, and the origin and migration patterns of distinctive peoples. Research on genetic differences among groups or populations, however, raises many pressing ethical and legal questions. For example, focus on biological differences of racial and ethnic groups has in the past lead to assumptions about superiority and inferiority between groups, and in practice resulted in stigmatization and discrimination. Consequently, attention on groups should raise legal and moral red flags and compel us to move cautiously in this area. Pragmatically, targeting population groups as the object of study requires the determination of the nature and scope of “population groups” for purposes of genetics research. (shrink)