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.
[An extrapolation of] Georgia's code regarding ownership
of genetic information [can be accessed at the following
Web site]
http://www.ganet.org/cgi-bin/pub/ocode/ocgsearch?docname=OCode/G/33/54/1&highlight=genetic/information
Note that the Georgia statute permits researchers to
conduct genetic testing for scientific purposes.
This article was originally published in the January/February
2001 issue of Health
Freedom Watch, the bimonthly watchdog report
published by the Institute for Health Freedom.
|
|
|
Americans concerned about genetic privacy and ownership
rights should carefully read consent forms when
undergoing medical procedures and treatments. |
|
