As I observed in my most recent
Voxiversity, Why the West Needs Christianity, the most
serious challenge now facing science is the historical decline in the
percentage of scientists who are Christians, and the concomitant decline in the
personal and professional ethics of scientists that has inevitably resulted from this demographic change. And this lack
of ethics is having a profoundly negative effect on science, including some
unanticipated consequences. In his book Who We Are and How We Got Here, David Reich laments
the decreasing willingness of American Indian tribes to permit their DNA to be
studied by genetic scientists as a result of bad behavior and broken promises
by previous scientists.
Modern genomics offers an unexpected way to recover the past. African
Americans—another population that has had its history stolen as its ancestors
descend from people kidnapped into slavery from Africa—are at the forefront of
trying to use genetics to trace roots. But if individual Native Americans often
express a great interest in their genetic history, tribal councils have
sometimes been hostile. A common concern is that genetic studies of Native
American history are yet another example of Europeans trying to “enlighten”
them. Past attempts to do so—for example, by conversion to Christianity or
education in Western culture—have led to the dissolution of Native American
culture. There is also an awareness that some scientists have studied Native
Americans to learn about questions of interest primarily to non–Native
Americans, without paying attention to the interests of Native Americans
themselves.
One of the first strong responses to genetic studies of Native Americans came from the Karitiana of Amazonia. In 1996, physicians collected blood from the Karitiana, promising participants improved access to health care, which never came. Distressed by this experience, the Karitiana were at the forefront of objections to the inclusion of their samples in an international study of human genetic diversity—the Human Genome Diversity Project—and were instrumental in preventing that entire project from being funded. Ironically, DNA samples from the Karitiana have been used more than those of any other single Native American population in subsequent studies that have analyzed how Native Americans are related to other groups. The Karitiana DNA samples that have been widely studied are not from the disputed set from 1996. Instead, they are from a collection carried out in 1987 in which participants were informed about the goals of the study and told that their involvement was voluntary. However, the Karitiana people’s later experience of exploitation has put a cloud over DNA studies in this population.
Another strong response to genetic research on Native Americans came from the Havasupai, who live in the canyonlands of the U.S. Southwest. Blood from the Havasupai was sampled in 1989 by researchers at Arizona State University who were trying to understand the tribe’s high risk for type 2 diabetes. The participants gave written consent to participate in a “study [of] the causes of behavioral/medical disorders,” and the language of the consent forms gave the researchers latitude to take a very broad view of what the consent meant. The researchers then shared the samples with many other scientists who used them to study topics ranging from schizophrenia to the Havasupai’s prehistory. Representatives of the Havasupai argued that the samples were being used for a purpose different from the one to which its members understood they had agreed—that is, even if the fine print of the forms said one thing, it was clear to them when the samples were collected that the study was supposed to focus on diabetes. This dispute led to a lawsuit, the return of the samples, and an agreement by the university to pay $700,000 in compensation.
The hostility to genetic research has even entered into tribal law. In 2002, the Navajo—who along with many other Native American tribes are by treaty partly politically independent of the United States—passed a Moratorium on Genetic Research, forbidding participation of Navajo tribal members in genetic studies, whether of disease risk factors or population history. A summary of this moratorium can be found in a document prepared by the Navajo Nation, outlining points for university researchers to take into account when considering a research project. The document reads: “Human genome testing is strictly prohibited by the Tribe. Navajos were created by Changing Woman; therefore they know where they came from.”
One of the first strong responses to genetic studies of Native Americans came from the Karitiana of Amazonia. In 1996, physicians collected blood from the Karitiana, promising participants improved access to health care, which never came. Distressed by this experience, the Karitiana were at the forefront of objections to the inclusion of their samples in an international study of human genetic diversity—the Human Genome Diversity Project—and were instrumental in preventing that entire project from being funded. Ironically, DNA samples from the Karitiana have been used more than those of any other single Native American population in subsequent studies that have analyzed how Native Americans are related to other groups. The Karitiana DNA samples that have been widely studied are not from the disputed set from 1996. Instead, they are from a collection carried out in 1987 in which participants were informed about the goals of the study and told that their involvement was voluntary. However, the Karitiana people’s later experience of exploitation has put a cloud over DNA studies in this population.
Another strong response to genetic research on Native Americans came from the Havasupai, who live in the canyonlands of the U.S. Southwest. Blood from the Havasupai was sampled in 1989 by researchers at Arizona State University who were trying to understand the tribe’s high risk for type 2 diabetes. The participants gave written consent to participate in a “study [of] the causes of behavioral/medical disorders,” and the language of the consent forms gave the researchers latitude to take a very broad view of what the consent meant. The researchers then shared the samples with many other scientists who used them to study topics ranging from schizophrenia to the Havasupai’s prehistory. Representatives of the Havasupai argued that the samples were being used for a purpose different from the one to which its members understood they had agreed—that is, even if the fine print of the forms said one thing, it was clear to them when the samples were collected that the study was supposed to focus on diabetes. This dispute led to a lawsuit, the return of the samples, and an agreement by the university to pay $700,000 in compensation.
The hostility to genetic research has even entered into tribal law. In 2002, the Navajo—who along with many other Native American tribes are by treaty partly politically independent of the United States—passed a Moratorium on Genetic Research, forbidding participation of Navajo tribal members in genetic studies, whether of disease risk factors or population history. A summary of this moratorium can be found in a document prepared by the Navajo Nation, outlining points for university researchers to take into account when considering a research project. The document reads: “Human genome testing is strictly prohibited by the Tribe. Navajos were created by Changing Woman; therefore they know where they came from.”
However, David Reich manages to completely miss the point and fails to
learn the obvious lesson of not lying to people and failing to deliver on one's
promises.
Scientists interested in studying genetic variation in Native American
populations feel frustrated with this situation. I understand something of the
devastation that the coming of Europeans and Africans to the Americas wrought
on Native American populations, and its effects are also evident everywhere in
the data I and my colleagues analyze. But I am not aware of any cases in which
research in molecular biology including genetics—a field that has arisen almost
entirely since the end of the Second World War—has caused major harm to
historically persecuted groups. Of course, there have been well-documented
cases of the use of biological material in ways that may not have been
appreciated by the people from whom it was taken, not just in Native Americans.
For example, the cervical cancer tumor cells of Henrietta Lacks, an African
American woman from Baltimore, were distributed after her death, without her
consent and without the knowledge of her family, to thousands of laboratories
around the world, where they have become a mainstay of cancer research.
But overall there is an argument to be made that modern studies of DNA variation—not just in Native Americans, but also in many other groups including the San of southern Africa, Jews, the Roma of Europe, and tribal or caste groups from South Asia—are a force for good, contributing to the understanding and treatment of disease in these populations, and breaking down fixed ideas of race that have been used to justify discrimination. I wonder if the distrust that has emerged among some Native Americans might be, in the balance, doing Native Americans substantial harm. I wonder whether as a geneticist I have a responsibility to do more than just respect the wishes of those who do not wish to participate in genetic research, but instead should make a respectful but strong case for the value of such research.
But overall there is an argument to be made that modern studies of DNA variation—not just in Native Americans, but also in many other groups including the San of southern Africa, Jews, the Roma of Europe, and tribal or caste groups from South Asia—are a force for good, contributing to the understanding and treatment of disease in these populations, and breaking down fixed ideas of race that have been used to justify discrimination. I wonder if the distrust that has emerged among some Native Americans might be, in the balance, doing Native Americans substantial harm. I wonder whether as a geneticist I have a responsibility to do more than just respect the wishes of those who do not wish to participate in genetic research, but instead should make a respectful but strong case for the value of such research.
Yeah,
attempting to justify ethical lapses and avoid the responsibility to obtain
consent on the grounds that you're ultimately doing more good than harm isn't
exactly convincing when the argument is being presented by a group of godless,
amoral individuals who are already known to be corrupt, untrustworthy, and
ethically challenged.
