WASHINGTON — As her mother slipped into the disoriented world of Alzheimer's disease, Oleta Toliver poured herself into a project that offered hope. She began turning up at nursing homes, church groups and family reunions near her Texas home, trying to coax Alzheimer's patients and their families to donate DNA to Texas Tech University.
Most families were eager to help. A Texas Tech scientist was using the DNA to search for Alzheimer's genes, and the rogue genes, in turn, had the potential to point researchers toward a cure. More than 10,000 people from 2,400 families eventually gave DNA to the effort, many at blood-drawing events arranged by Toliver.
Then, after nine years, the gene hunt suddenly stopped. The university fell into a dispute with the lead researcher over who controlled the DNA collection and who could use the samples. Amid the fight, all work was suspended in January 2000.
"I feel like we've been cheated," said Toliver, 74, who fears that Alzheimer's disease will one day afflict others in her family. "The people who contributed samples, this was their prayer -- that we could in some way help with this disease. But it's been years of wasted time."
Each year, thousands of people donate DNA to medical research, often in the hope that finding a new gene will lead to a promising insight, a new diagnostic test or a better treatment for a disease or disorder that plagues their families.
These DNA collections are often the raw material for scientific breakthroughs, and many researchers and patient groups believe that they should be managed like lending libraries, open to any scientist. But too often, they say, researchers refuse to share DNA, even when taxpayers are covering the costs.
Sometimes, scientists hoard DNA in hopes of being first to publish career-boosting discoveries. At other times, scientists want to protect their ability to file patents on genes. Or, they may be simply unwilling to take the time to resolve the privacy and technical issues that cooperating with other scientists requires.
The lack of sharing has hindered research into Alzheimer's disease, autism and several rare disorders, scientists and patient groups say. Some patient groups have become frustrated and are building their own DNA banks.
"It's just surreal to me that people won't share DNA, and it's so obviously not in the patients' interest," said Jonathan Shestack, a Los Angeles film producer whose son has autism. Shestack said the hunt for autism genes was moving at "30 miles an hour instead of 70 miles an hour" because some scientists refused to pool DNA samples. "To think that one person or a few people can stymie this research is crazy."
"What's at stake here is: Whose DNA is this, anyway?" said Dr. Katrina Gwinn-Hardy, a researcher at the National Institute of Neurological Disorders and Stroke. "These samples are given to us with the trust that we use them to learn more about diseases so we can help people."
She said scientists she knows have gone so far as to water down the DNA they send her to keep more for themselves.
"We were absolutely livid," said Judith Tsipis, a biology professor at Brandeis University, outside Boston, about her experience with gene-hunters. In the late 1980s and early 1990s, a group Tsipis works with recruited DNA donors for a Miami Children's Hospital researcher, considering it a gift to the public. The donors hoped that the researcher would find the gene for Canavan disease, a brain-wasting illness that was killing their children, and that doctors would use the new genetic knowledge to test parents and unborn children for Canavan at little or no cost.
That happened. But the Miami hospital also filed for a patent on the Canavan gene without telling the DNA donors, the parents say in a lawsuit.
After the patent was awarded in 1997, the suit says, the hospital set fees and other conditions that prompted some clinics to drop their testing programs.
"Our children were dying, but this was a way we could help others," said Tsipis, whose son, Andreas, died of Canavan in 1998. "That's why we provided samples and raised money for the research." The hospital says that the parents agreed to the patent -- and that its fees will never cover the cost of creating the test.
No law requires scientists to share the DNA they collect in the course of research. However, many scientists say that sharing DNA from patients is in the public interest, because it allows more researchers to study a particular disease.
In April, the international Human Genome Organization, which tries to promote collaboration on gene research, declared that collections of DNA data are "global public goods" and a "public resource," although scientists, private companies and research institutions also have a right to "fair return" on their contributions to DNA databases. Since 1999, the National Institutes of Health has said that researchers must share the DNA they gather as a condition of receiving federal grants.