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Who Owns Your Genetic Information?

April 3, 2001

Do you own your genetic information? The answer depends on where you live. If you live in Oregon or Georgia--the two states that have genetic ownership laws--it appears you do. But if you live in another state, you may not. Consider the case of John Moore. (The following information is summarized from John Moore v. The Regents of the University of California, Supreme Court of California, decided July 9, 1990).

John Moore's Case

John Moore, a resident of Seattle, Washington, first visited the UCLA Medical Center on October 5, 1976, after learning he had leukemia. After hospitalizing Moore and withdrawing large amounts of his blood, bone marrow aspirate, and other body substances, a research physician discovered that Moore's blood contained a scientifically and commercially valuable substance.

Moore underwent surgery on October 20, 1976, to have his spleen removed, as recommended by the research doctor. Between November 1976 and September 1983, Moore returned to the medical center several times for recommended follow-up care.

During each visit the research doctor obtained additional samples of blood, skin, bone marrow aspirate, and sperm. Moore traveled from his home in Seattle to the UCLA Medical Center for each visit because he was told that the procedures were to be performed only there and only under the direction of the research doctor. Throughout the period Moore was being treated, the following interests not only conducted research but also planned to benefit financially from that research: the research physician, the medical center, another researcher employed by the medical center, a genetics institute, and a pharmaceutical company.

On January 30, 1981, the Regents of the University of California applied for a patent on Moore's cell line, which was established by the research physician. The patent was issued March 20, 1984.

Moore brought suit against the five parties involved in the nonconsensual research. His charges included a breach of trust (fiduciary duty), lack of informed consent, and "conversion," defined by the court as "the wrongful exercise of ownership over personal property belonging to another."

California Supreme Court Ruling

The California Supreme Court held that Moore had a cause of action in tort against the research physician for breaching his duty to inform Moore of what he intended to do with his cells. However, Moore did not win his property-rights (conversion) argument. The court cited many reasons for rejecting the property-rights argument. For example, the court wrote: "Research on human cells plays a critical role in medical research. This is so because researchers are increasingly able to isolate naturally occurring, medically useful biological substances and to produce useful quantities of such substances through genetic engineering. These efforts are beginning to bear fruit.... The extension of conversion law into this area will hinder research by restricting access to the necessary raw materials." The court further noted that according to the U.S. House Committee on Science and Technology, "49 percent of the researchers at medical institutions surveyed use human tissues or cells in their research."

Dissenting Opinions

Two justices dissented from the majority opinion regarding Moore's property-rights claim. Justice Broussard wrote: "If, for example, another medical center or drug company had stolen all of the cells in question from the UCLA Medical Center laboratory and had used them for its own benefit, there would be no question but that a cause of action for conversion would properly lie against the thief, and the majority opinion does not suggest otherwise."

Genetic Ownership Rights

With Congress working toward doubling the National Institutes of Health's budget, the demand for body tissue and cells will increase in the coming years. Americans concerned about genetic privacy and ownership rights should carefully read consent forms when undergoing medical procedures and treatments. They can also request to delete or add provisions to the standard consent forms.

Those interested in "genetic ownership rights" might consider whether Oregon and Georgia statutes provide adequate property rights. The "Oregon Genetic Privacy Act" (Senate Bill 276) was passed in 1995. However, researchers and other industry groups are trying to overturn the property rights aspects of the law. In 1999, it was modified (Senate Bill 937B) to permit research on individuals' DNA samples if, among other provisions, the research is conducted in accordance with "Federal Policy for the Protection of Human Subjects with the approval of an institutional review board established in accordance with that policy." Another bill was introduced in January 2001 (Senate Bill 114) that would weaken the property rights aspects of Oregon's genetic privacy law.

Democratic Oregon Rep. Richard Devlin stresses that "Because the potential misuse of genetic information and subsequent harm to individuals is not imaginary, it will become increasingly important for policymakers to be aware of new genetic advances and to re-evaluate genetic policies as knowledge about genes increases." He notes that it is important for policymakers to consider what are an individual's rights to genetic privacy and ownership.

[A copy of Georgia's state code regarding ownership of genetic information is posted here.]

This article was originally published in the January/February 2001 issue of Health Freedom Watch.

Page updated November 4, 2009.

 
Americans concerned about genetic privacy and ownership rights should carefully read consent forms when undergoing medical procedures and treatments.