Blood center to collect DNA of donors

For the first time, the Puget Sound Blood Center will begin collecting, testing and storing the DNA of blood donors.

Donors may opt out of the program, part of a study funded by the Defense Department to develop better ways of identifying blood types. And the Blood Center is firm that the effort will be limited to that purpose and not shared with the government.

Even so, privacy watchdogs worry that this latest move is just part of an increasingly long list of governments and other agencies that are storing people's DNA coding -- with few laws overseeing its use.

"There are no real practical limits on what can be done with that DNA information," said Barry Steinhardt, who heads the American Civil Liberties Union's national Technology and Liberty Project in Washington, D.C. "People ought to be very afraid that these samples are going to be used for some other purpose."

A "different method"

The purpose of the Blood Center study is to help develop new DNA-based tests to record more sophisticated profiles of blood donations, beyond the usual A, B, O and Rh factor designations.

The DNA tests will be limited to looking for substances in blood called antigens, said Dr. Richard Counts, president and CEO of the Puget Sound Blood Center, the primary blood-donation organization for Western Washington.

The Blood Center already tests blood for antigens, but the old-fashioned tests are time-consuming and expensive, Counts said. With the grant from the Defense Department, the center will use DNA tests instead.

"The only information we'd be learning about the donor are things we can already learn about our donors, and we do," Counts said. "It's just a different method."

The eventual goal is to develop DNA-based tests to provide faster and cheaper ways to identify rarer blood groups by looking for genetic markers, Counts said. Eventually, such DNA tests could type blood in a dozen or more ways at once, closely matching donor and patient.

"Then we'd be able to provide patients with the best possible match," he said. That would avoid problems with patients who need multiple transfusions and it would help save lives in emergencies, he said.

Several other blood-bank research labs in the U.S. and Europe also are working to refine DNA tests for blood typing, Counts said.

The program is funded by an $850,000 grant for one year, with an option to extend for one more. The blood center hopes to test 5,000 donors over that two-year period.

Funding was authorized by Congress as a special-interest project, with Army and Navy branches involved only as grant administrators, said Dr. Frank Garland, technical director of the Naval Health Research Center in San Diego.

"We execute the program, but we have no involvement in any way in the science or the objectives of the research project," Garland said. "We have no access to any blood or patients involved in this."

The project wasn't the military's idea, Garland said. The military just happens to be doing it "for increase in general knowledge," he said. "We're not doing this to get the results for the Navy."

Donors will be informed of the study, and can opt out of having their DNA tested, recorded and stored while still being allowed to give blood. Stored DNA will be labeled with a code that doesn't directly identify the donor.

Tom Butterworth, blood-center spokesman, said there is no time limit for storage specified in the grant. He also emphasized that donor records are confidential.

"We don't release them to anybody; we would not voluntarily release them to any funding agency," Butterworth said.

But there is no law preventing police or courts from seeking the records, Butterworth conceded.

"We are not above a court of law," Butterworth said. "We would defend the donor's right to privacy as well as we could, but, obviously, we are not going to do anything illegal."

Sacrificing privacy?

That uncertainty has civil libertarians such as the ACLU's Steinhardt highly concerned.

Steinhardt warns that databases of personal information created for one purpose are "inevitably used for other purposes" or linked into one huge database.

"In the so-called 'war on terror,' people are told they're compelled to make sacrifices, and one of those sacrifices is privacy," he said.

For Dr. Wylie Burke, a medical geneticist who chairs the University of Washington's Department of Medical History and Ethics, the concerns are understandable.

"This has to do, fundamentally, with trust," she said. "After all, if you're the blood bank, you're taking my blood, and you could do all sorts of things with it."

Burke says she has seen a "residual uneasiness" about genetics information in general because DNA has become "culturally structured as a very powerful thing."

But, in the end, Burke says the real question is whether giving such information to the blood center puts it in "the wrong hands."

Her answer: "I trust the blood bank."

Carol M. Ostrom: 206-464-2249 or costrom@seattletimes.com