Genes: Are They Yours to Keep or Sell?

May 8 -- 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.