Genes: Are They Yours to Keep or Sell?

ByAmanda Onion

May 8, 2001 -- Ever since Margaret Everett's 3-month-old son, Jack, died of a rare genetic disease, Everett has continued to watch over him — by owning and regulating the rights to his DNA.

Everett and her husband decided to release their son's genetic information to research but any time scientists want to use Jack's cells for new tests, they must consult his family for specific permission.

"Is it appropriate to consider DNA 'private property'?" Everett wrote in an Oregonian newspaper column in 1999. "I cannot answer that in the abstract, but I do feel very 'proprietary' about my son's cells."

In 1995 Oregon became the first state in the nation to declare a person owned his or her DNA and that of their children. Now lawmakers are looking to replace the ownership law with one they say would provide equivalent protection while eliminating a policy that the pharmaceutical industry and biotech researchers say hinders vital research.

If the new law passes in June, Everett's right of ownership to the DNA of her son, who died in 1998 of a rare genetic brain disorder, could be taken away. The prospect is unnerving to some, although now even Everett believes genetic ownership may not be the best way of protecting her late son's privacy.

"I've become convinced that the property clause, although it may seem to make sense, has some limitations," says Everett.

Ownership vs. Protection

Under the latest version of the proposed Oregon law, someone's genetic information would no longer be considered private property once it is separated from that person's identity either through encryption or anonymous research.

At the same time, the law stiffens protections of genetic privacy. For example, before using genetic information, companies must ensure that individuals or their representatives have offered blanket consent. And any researchers who illegally obtain or disclose genetic information under the new law could face up to $250,000 in fines.

The bill is the result of more than two years of collaboration among consumers, genetic researchers and pharmaceutical company representatives. Some state lawmakers boast it could become the most far-reaching legislation of its kind in the country.

But despite its protective measures, many still feel threatened by the new bill.

"DNA is you, it's the coding for the most intimate part of you — your own body," argues Steve Chase, founder of the citizen's group Oregonians for Genetic Integrity. "The ability to own yourself is a basic right and this bill strikes that language from Oregon law."

In fact, legislation declaring DNA private property is rare in the United States. While many states have laws to protect genetic privacy, besides Oregon, Georgia is the only other state to declare genetic information private property. Some argue that such legislation is rare for a good reason: if genetic information can be owned, then it can also be sold.

"When you make the method of privacy protection a property right, you make it an alienable right — meaning you can give or sell it away," argues Jim Gardner, Oregon counsel for Pharmaceutical Research and Manufacturers of America (PhRMA). "So when it's gone, it's really gone."

My Genes, My Profits?

Gardner's group is also concerned about the restricting effects the ownership clause has on the biotechnology industry. He argues that in recent years large biotech companies have avoided projects in Oregon, knowing that researchers might have to jump through extra hoops before conducting tests.

Some of those hoops can be especially problematic. For example, in some cases, donors of genetic material are already dead and can't be consulted for permission. Plus, some argue, what happens if every person who has ever contributed tissue towards research starts asking for a cut in profits made in resulting drugs or treatments?

Such demands could lead to endless paperwork and logistical snares. Still, some argue, if any industry is robust enough to handle extra hassle, it's the highly profitable pharmaceutical and biotech industries.

"The profits of these companies are huge, so why shouldn't they have to go through the same process they'd have to go through to access other kinds of property?" says Chase. "If you wanted to mine gold out of someone's yard, you'd have to do the same thing. DNA is our own personal gold."

Beyond State Borders

The DNA Privacy and Research Bill (SB 114) is expected to become law by June. Many, such as genetic researcher Susan Hayflick, of the Oregon Health Sciences University, feel the bill will offer an unprecedented model for genetic privacy legislation. As she says, "Many other states have legislation, but none are as far-reaching."

But Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, feels that nothing but federal legislation will ever be enough to offer Americans significant genetic privacy protection. The only federal law now pending that could begin to offer such protection, he says, is the Health Information Privacy Protection Act, which still faces many battles in Congress.

"Genetic information moves across state laws rapidly," Caplan says. "It's transferred electronically, people in the United States move an average of once every 5 years. State-based privacy laws don't give us much protection. You need a rigorous federal law."

In the meantime, Everett, who contributed to discussions about the new Oregon bill, feels the legislation could offer the best state-level protection for her son's genetic legacy.

"Now I don't really think I want to own my son's DNA," she says. "I just want to make sure someone has to ask me if it's OK to use it. I think this law is the best we can do at a state level."