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Human Genome Diversity Project raises serious ethical issues
STANFORD -- Exploring the genetics of why each person is unique excites scientists but, at the same time, raises a host of ethical and human-rights concerns.
While such research is nothing new - scientists have pondered genetic variability throughout the century - the proposed Human Genome Diversity Project (see main story) might move the possible misuse of powerful molecular techniques into the limelight of public attention.
To tackle these issues, the organizing committee of the diversity project recently held a workshop with science sociologists and historians, anthropologists, bioethicists and representatives of federal research agencies in Bethesda, Md.
As a systematic, large-scale international project with a capitalized name, the Human Genome Diversity Project could be stymied by divisive discussions even before it gets off the ground, facing more public criticism than the much larger but less politically sensitive Human Genome Project.
Will racists or nationalists misuse the project's data? Should indigenous populations receive compensation for future commercial products developed with their genetic material? How does one ensure informed consent from illiterate peoples who have never heard of evolution or may have their own philosophy about human history?
The participants of the daylong human-rights session, organized by Henry Greely, Stanford professor of law, examined concerns and possible solutions that need to flow into the design of the diversity project to avoid abuse and prevent harm to indigenous populations.
While none of the participants questioned the scientific value of the proposed studies, they warned that racial misuse or political confrontations with the involved developing countries might force an early end to the project if the scientists ignored sensitive issues now.
"If the Project does not proceed carefully, it could spoil the last opportunity to obtain these data," Greely wrote in his report on the meeting.
The danger of racist interpretations of genetic differences worried some scientists, while others predicted that more research, accompanied by a public education campaign, would further undermine the outmoded concept of race.
Diane Paul, a sociologist and historian at the University of Massachusetts, predicted at the Bethesda meeting that the project would reinforce traditional notions of race simply by studying genetic differences between peoples. Although the scientific findings per se likely will weaken the traditional concept of race, she said she did not expect that knowledge to reach the general public, much less people with racist attitudes.
She contended that because scientific findings are never clear-cut, they are open to different interpretations and can be invoked for every social agenda.
"I hate the word race," Luigi Luca Cavalli-Sforza, Stanford emeritus professor of genetics, said in an interview. "There is still an enormous amount of racism but the word race is useless to describe genetic variation in humans.
"It's completely arbitrary to define a race. You could define a few, five, or, if you want to be complete, maybe 15,000."
We generally recognize a 'race' based on skin color and facial features, admittedly striking traits that are quite homogeneous within an ethnic group, he said. Yet, they don't represent general genetic differences but simply reflect evolutionary adaptations of humans to the pressures of different climates.
"We are preoccupied by skin color differences, which give us the impression that the 'races' differ greatly," Cavalli-Sforza said. "That's not true. It is extremely rare to find other genes with the same degree of variance as skin color. All the other genetic differences are very small."
"I believe our studies will only show, as they have done in the past, that the real distinctions are among individuals, not among 'races.' "
History proves that genetics has nothing to do with supremacy, he said, because genes change much too slowly to be responsible for the successive rising and falling of powerful peoples.
The diversity project could counteract racist statements by disproving them quickly, said several participants of the workshop. Inspired by guidelines for dealing with the media that were developed when gene therapy started to make headlines, the workshop participants contemplated having "ready response teams" to rebut false statements and to keep track of how the project's data were being used.
Though the envisioned 'DNA banks' would be in the public domain, making future use (and misuse) of the DNA unpredictable, quick responses of independent researchers could correct odious experiments or results.
That has worked in the past thanks to open access to data, the report quoted William Schneider, chairman of the department of history at Indiana University-Purdue University at Indianapolis. Schneider has written extensively on the use, and abuse, of population variations in blood-group data during the last 75 years.
He said that "the truth finally came out" when, in the 1930s, anti-Semitic scientists misused data on variations in blood group genes to claim 'racial pureness' of northern and western Europeans as compared to southern and eastern Europeans.
As Greely's report describes, a 'biochemical index of race' was created based only on the distribution of blood group genes that placed 'Aryan' Europeans at the top of a numerical scale.
Through bad science, that index initially provided the basis for Nazi claims about 'hierarchies of peoples.' In the following years, however, the blood group research was objectively analyzed and finally helped correct simplistic definitions of race. Schneider urged that access to the research data must be open for that to happen.
At the same time, free access to the cell lines may create new problems.
For instance, countries that donated blood samples might seek payment in return for their contribution to future commercial products derived from the collected DNA.
Though the diversity project is a basic science endeavor, it might lead to new drugs, diagnostic tests or other products, particularly if drug and biotechnology companies also use the DNA banks. According to the report, the legal, ethical and political aspects of this scenario are complex and anything but clear.
Greely suggested that the project consider compensation for Third World countries and that it promise not to patent human genes, only the products developed from them. That could prevent intellectual- property rights from clashing with the Third World's interest, and simultaneously alleviate political concern in developing countries that are sensitive to depleting their biological resources.
Compensation could come in many possible shapes: technology transfer, funding of health centers, or royalties administered by a UNESCO fund, according to Greely's report.
The scientists also have to solve more immediate problems than sorting out possible compensation to the sampling populations, such as how to do the sampling in the first place.
For instance, how would you approach a remote indigenous community that follows deep animistic beliefs, explain to them that their bodies contain valuable genetic information, and make sure they understand and consent to having their blood drawn?
Ensuring informed consent from isolated peoples will be easier if done by anthropologists already familiar with the groups, who speak their tongue and have their trust.
On top of that come political problems with the respective governments. Often the endangered populations are disappearing because "the country's government regards them as trouble with respect to economic plans. You may damage such groups by being in contact with them," said Marc Feldman, Stanford professor of biological sciences, who helped organize the meeting.
"For example, we would have to protect the interests of forest-dwelling people in areas where forests are cut down, like Amazonian Indians or native peoples in the Philippines or Malaysia," he said. Drawing public attention to the fate of threatened populations can help, he said, but not every government will respond by protecting them.
This story was written by Gabrielle Strobel, a science writing intern at the Stanford News Service.
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