THURSDAY, July 8, 2004 (HealthDayNews) -- More and more people are having their genetic information stored on databases, and not enough thought has been given to protecting their privacy, Stanford University researchers say.
Genetic databases are "a growth industry," said Dr. Russ B. Altman, a professor of genetics and medicine at the university, and lead author of a report in the July 9 issue of Science. "Now is the time for society to think about privacy issues and come up with answers," he said.
Keeping genetic information private is important because there are concerns about "discrimination, stigmatization or loss of insurance or employment for individuals and their relatives," said the report by Altman and his colleagues. Their research has found that a determined, knowledgeable person can extract specific information about people from databases, something that had been regarded as impossible.
Genetic databases have been made possible by the Human Genome Project, which has recorded the complete sequence of DNA units that govern the operation of the human body. Genetic information about hundreds of thousands of people now are in databases, some because they volunteered for scientific or medical studies, some because it was needed for medical treatment.
Each individual has his or her own genetic pattern, resulting from differences in DNA sequences called single nucleotide polymorphisms (SNPs). It had been assumed the sheer number of DNA units and SNPs would make it impossible to identify a person from the information in databases. But Altman said confidentiality appears to a lost hope, even if safeguards are built into databases.
The Stanford database run by Altman has about 5,000 entries. Efforts to manipulate the data so that secrecy about individuals could be maintained failed because "everything we tried ruined it for research," he said.
"This is an exhortation to policy makers to sit down and make significant rules about genetic databases because they have special characteristics that make them different from all other databases," he said.
One solution would be to set strict limits on who can create genetic databases and to establish systems that would limit access to those databases, Altman said.
Dr. Paul R. Billings is chairman of the Council for Responsible Genetics, a Massachusetts-based public interest group. He said the new Stanford report is important because "these are very highly qualified biostatisticians" who show that there are strategies "that result in a situation where anyone with a limited amount of genetic information about a person can find very intimate information about that person."
"It is easy to create databases, so we have to curb their creation and also punish people who use them for purposes that are not in the individual's or public good," said Billings, who is a professor of anthropology at the University of California, Berkeley.
Billings said he wrote a scientific paper more than a decade ago saying that "no matter how you do it, people will find a way to hack into them [genetic databases] for insurance purposes, marketing purposes or whatever. Currently, technological fixes for this challenge to privacy are inadequate."
More information
Learn more about the uses and possible misuses of genetic information from the National Human Genome Research Institute.
