Blood Feud: Attempts to Use Gene Technology to Trace the Migration Patterns of Early Humans Have Pitted Scientists against Indigenous Peoples and the Groups Who Represent Them. Can a Way Be Found through This Ethical Minefield, or Will the Scientists Be Forced to Abandon Their Research?
Furniss, Charlie, Geographical
Phoenix, Arizona, is becoming one of the USA's hottest tourist cities: with more than 300 days of sunshine a year and great opportunities for shopping and fine dining, and for exploring the surrounding region's unique natural and cultural heritage, it has been attracting increasing numbers of visitors during the past decade. But early next year, the city will become the focus of international attention when Maricopa County Superior Court hears two of the most controversial lawsuits to have been launched against the scientific community in recent years.
The two cases, one brought by 72 members of the Native American Havasupai tribe and the other by the tribe as a whole, accuse a University of Arizona geneticist of using their blood for research without their authorisation. The tribe claims that between 1990 and 1994, Therese Markow, currently director of the university's Center for Insect Science, and two colleagues collected almost 400 blood samples under the pretence of helping the tribe to fight high levels of diabetes and subsequently used them, without permission, to study schizophrenia, inbreeding and human migration.
Both suits name Arizona State University, where Markow and her colleagues carried out her research, as well as the University of Arizona, the Arizona Board of Regents and Stanford University, where Markow allegedly sent other samples. They are claiming ethical violations, including breach of trust, fraud and violation of tribal members' civil rights, and are asking for a combined total of US$75million in damages.
The case comes at a significant moment. Since the early 1990s, an increasing number of lawsuits have seen indigenous peoples attempting to fight back against alleged exploitation by Western geneticists and anthropologists eager to analyse their DNA. Earlier this year, the UN became involved in the row, when its Permanent Forum on Indigenous Issues called for the suspension of the most ambitious study into the origins of human genetic diversity ever undertaken.
The debate is a fascinating one. On one side are some of the world's most distinguished anthropologists and geneticists, striving to find answers to fundamental questions about our species' origin and searching for cures to a host of genetic diseases. Their research, they say, is of universal value to humanity.
On the other side are some of the world's most endangered communities, who are struggling to preserve their cultural integrity, to retain their ancestral lands and, in some cases, to survive. Such research, they argue, is a new chapter of an old story of extractive, 'helicopter' science, where researchers from wealthy countries have profited from indigenous knowledge and culture while their subjects have received no benefit. Not only does it abuse indigenous peoples' human rights, they say, its results could have dire implications for their future security.
So who is right? Should we uphold the rights of indigenous peoples at the expense of pioneering scientific research? Or should we forsake the rights of the minority for the sake of the greater good?
Where did we come from?
In May this year, scientists from the Wellcome Trust Sanger Institute near Cambridge published a detailed analysis of the largest chromosome in the human genome. In doing so, they marked the end of ten years' work and the final chapter of the Human Genome Project, an international research initiative to map all of our genes. The work was celebrated the world over: as well as representing a landmark in the study of genetics, it provided the opportunity for researchers to gain new insights into genetic illnesses such as various cancers, high cholesterol, Parkinson's disease and Alzheimer's.
Around the same time, another groundbreaking study into human genetics was dealt a significant blow when the UN Permanent Forum on Indigenous Issues (UNPFII) recommended that it should be suspended and its objectives investigated by the World Health Organization and the Human Rights Council. …