Your DNA, Their Profits. Who Benefits?

Give away your DNA online and feel good about it. You're helping a company develop genetic tests.

DNA Sciences Inc. is betting you'll go for this proposition. 

With just a few clicks through its Web site, DNA.com, you can volunteer to donate your DNA to the company's research project, the Gene Trust. The project aims to develop genetic tests for 20 conditions, from Alzheimer's to colon cancer to heart disease, and patent these tests then sell them to the health care industry or directly to consumers through the Web site.

The quest for the perfected gene map is fueling the effort. "What we're trying to do is take the next step from the sequencing of the human genome," said Steven Lehrer, chief business officer of DNA Sciences.

The company will gather DNA from at least 100,000 Americans for 20 separate genetic studies. But will people will feel safe donating their DNA to cyber science? The ethics of for-profit research as well as genetic privacy come into question — you know they are hoping to make money off your genetic information.

"You can't even get people to fill out census forms," points out George Annas, a Boston University bioethicist. "So I doubt you're going to get them to give DNA to some [gene] bank out in cyberspace."

Conscious of these concerns, the Web site makes an emotional appeal:

"If you've ever known someone suffering from a disease — maybe a parent, a child or even yourself — you know what it means to feel powerless," the opening animation says. "But what if you could be part of the solution? What if you could help find better treatments and more effective diagnostics? That's the ultimate goal of the Gene Trust project."

People who give their DNA to a study on a particular condition will also get something back: a free test, once it's developed.

Private Screening

What about privacy?

DNA Sciences, which has on its board an all-star panel of bioethicists and leaders in the field of genetics, asserts it painstakingly protects volunteers' privacy. The only information it collects online is general health information, Lehrer said, and this information is de-identified and taken offline as soon as it's received.

A person then goes over a thorough informed consent form with someone from DNA Sciences. The company arranges for a person's blood to be drawn at a convenient location; then, when the blood is drawn, the company puts a bar code on the blood.

The company further promises not to release any personal identifying information to researchers or anybody else without a person's consent.

But it's unclear whether DNA Sciences will be liable if there is a breach of privacy. There are currently no laws in the United States that specifically protect genetic privacy, Annas said. If a person wants their DNA sample destroyed or wants out of the project, there are no laws that protect their right to do so.

Profits and Benefits

Another major ethical question revolves around the issue of profit.

While it's one thing to donate your blood to the Red Cross or participate in medical research at an academic institution, is it the same to help a business?

The company defends its profit motive as necessary to move the research forward. "To do this work is very expensive," Lehrer said. "It requires a private company to do it. It won't be done in the public sector."

This mixture of profit and scientific advancement is becoming increasingly common in the world of genomics.

DeCODE genetics, an Iceland-based company publicly traded on the NASDAQ, is collecting health information from patient records in the Icelandic health care system. Cambridge, U.K.-based Gemini genomic is conducting a similar research using health records on the isolated homogenized population of Newfoundland.

The people of Iceland may profit financially from the venture since they own a significant portion of DeCODE; they'll also supply the country with any drugs developed through the genetic database it develops free of charge. Gemini has agreed to pay royalties from drugs developed through its research on Newfoundlanders to a foundation benefitting them.

Beyond the free test, DNA Sciences only offers "to take a pro-patient point of view in helping you understand the role genetics can play in diseases that affect you and your family," according to its Web site.

Questions remain as to whether DNA Sciences' offer is really a 'reasonable return' on a person's investment.

"The process of informed consent for participation in projects such as the Gene Trust Project should involve a discussion of such questions, and a discussion of some reasonable answers to them," said James Till, a University of Toronto bioethicist whose research centers on DeCODE. "This is a novel area of research ethics."