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Who Owns Our DNA?

Richard Ward found out he had an aggressive form of prostate cancer nearly nine years ago. He was operated on by an internationally known doctor named William Catalona who was working at Washington University in St. Louis. Ward was grateful, and donated his tissue to his doctor for research-- to help find a cure someday. Later, Richard Ward was shocked to learn that his tissue was part of a tug of war between the doctor and the university. It's a case that's been to two federal courts so far. As part of our special DNA Files series on genetics, Chicago Public Radio's Lynette Kalsnes reports on a case that will have a lot to say about who owns our DNA.

Catalona is a landmark case.

Because, at heart, it's about who owns, and controls your biological information once you've donated it.

Richard Ward:

To think that they're fighting over a copy of my DNA, which we now know is essentially my blueprint for my body, I'm not too happy about that frankly. I think that the responsibility should be definitely to do what I want done with those tissues.

Ward believes Dr. Catalona should have the right to keep his sample for research.

After all, that's who he gave his tissue to.

But when Catalona got a new job at Northwestern University and left, and tried to take Ward's tissue and others with him, Washington University sued.

The university claimed it owned the tissues, not Catalona, not Ward.

A federal court and an appellate court agreed with the university.

CATALONA: It makes a mockery of the informed consent document.

That's Dr. Catalona.

CATALONA: You know, I think that this makes the research participants wonder whether that document is worth the paper that it's written on.

The appeals court said once you've donated tissues, you've lost control over them, although you can stop participating in research.

ANDREWS: What we've encountered now is a giant bait and switch.

Chicago-Kent Law Professor Lori Andrews believes the ruling sets a dangerous precedent that could let universities and research tissue banks use genetic material any way they want.

She says if you donated a sample for prostate cancer research, it could end up being used for something else like schizophrenia, without your knowledge.

ANDREWS: Since these samples are so valuable, and can be sold off to biotech companies, patients have begun to be viewed as treasure troves by researchers.

On the other side of this story is Washington University.

It spent hundreds of thousands of dollars helping to create one of the world's most renowned collections of prostate cancer tissue.

Dr. Larry Shapiro is dean of the school of medicine.

SHAPIRO: This is not about profit. These repositories are really a valuable resource for scientists around the country.

The university has no intention of selling Ward's tissues, or anyone else's, for that matter, says Shapiro. It's only going to do what Ward and others wanted – prostate cancer research.

So here's why the university sued to keep the tissues:

SHAPIRO: If we thought they could be disassembled at any point in time by an individual investigator, it would become very difficult to marshal the resources needed to establish and maintain these repositories.

It would cause chaos, he says, if patients or researchers could control DNA samples once they've been donated. Catalona says those fears are overblown.

CATALONA: Any inconvenience or problems it would cause are far outweighed by respecting the rights of individuals.

The Greenbergs would agree with that.

They're a suburban Homewood family who helped pioneer research for a rare and deadly disease only to find it commercialized… without their knowledge.

DEBBIE GREENBERG: He did not have any head control, eye contact, he couldn't reach or grasp for toys, he couldn't put his hands to his mouth. He had a lot of difficulty eating. He cried almost all the time, unless he was being held and moved.

Debbie Greenberg realized something was wrong with her firstborn child within days.

Her son Jonathan had Canavan disease, or spongy degeneration of the brain.

It's a terrible and rare genetic disease, that disproportionately affects people of Ashkenazi Jewish descent.

If both parents carry the gene, there's a 25 percent chance their child will get the disease.

At the time the Greenberg's son was diagnosed in 1982, science had not yet found a way to tell if someone was a carrier.

Two years later, the Greenbergs had a daughter, Amy, and soon learned she had the condition, too.

DEBBIE GREENBERG: It was horrible to receive that diagnosis, and to know that you'd have to watch two children die.

Jonathan died at 11, Amy at 16.

DEBBIE GREENBERG: They basically stayed at a newborn level their entire lives, except that they smiled and laughed, and every smile was worth a million dollars.

Throughout the children's lives, Debbie's husband, Dan, had been raising money to help fund research for a cure. He even provided their children's tissue. He quietly started a registry of about 25 other families, so there'd be additional genetic material.

The Greenbergs were elated when researchers at Miami Children's Hospital discovered the Canavan gene, and developed a genetic test.

DAN GREENBERG: If your children's lives could help accomplish something better in this world for other people, that's a real blessing that your children brought to this world.

But what happened next, they say, was like a slap in the face. Miami Children's had patented the gene. And the hospital had begun charging a royalty fee, and limiting the number of licenses for researchers.

To Dan Greenberg, that patent meant fewer people trying to find a cure.

DAN GREENBERG: I feel the commercialization of the Canavan gene is really a desecration of all the good that came out of our children's lives.

The Greenbergs and others filed suit and later settled.

DAN GREENBERG: For the most part, medicine has become a big business, and it's no longer the altruistic helping of mankind that it used to be.

But nobody's making big bucks off the Canavan gene. Miami Children's invested more than $5 million into the research. And the small royalty fee it's charging goes directly back to research.

NOONAN: Profit can't be a dirty word, because if we don't have profit, no company is going to take the risk.

Patent lawyer Kevin Noonan, who specializes in biotech cases, says research is expensive and a lot of drugs and tests never make it to market.

So it's the promise of a lucrative patent that keeps the research going. Last year, the trade group called BIO reported the U.S. biotech industry made more than $55 billion. The industry invested nearly 23 billion on research and development.

The need to advance medical research and fund it lies on one side of this issue, on the other, the need to protect the rights of individuals.

Rex Chisholm, who heads the Center for Genetic Medicine at Northwestern, thinks his gene bank has a solution.

CHISHOLM: I don't like the idea that there are particular companies that might own particular genes in my genome. I think those are shared by all of humanity, and I think, in a sense, humanity should think about the fact they should have ownership of that.

When someone wants to donate to the gene bank, he or she signs a consent form that is crystal clear.

It guarantees the samples are used in a way that's consistent with what the donor wants. And that could include producing a marketable product. Any profits would fund future research.

CHISHOLM: I mean, after all, we can do all the research in the world that we want, but if we can't deploy that research to better people's health care, then we haven't really, I think, closed the deal that we made with our participants in our studies.

That's a deal that Richard Ward and the Greenbergs say is at least a step in the right direction.

I'm Lynette Kalsnes, Chicago Public Radio.

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