Genetic Privacy Issues Call for Public Discussion
The Oregonian, 10/14/2000
by Gregory L. Fowler, Ph.D., Executive Director, Geneforum
In light of current technological advances in human cloning, stem cell research, biochip technology, human embryo implantation and human germ cell manipulation, the need for all of us to participate in the key policy choices ahead is growing more important by the day.
The genomics revolution rolls on, promising tremendous improvements in our ability to secure a new level of physical well-being while simultaneously making us uneasy about the future. The question becomes: If you can't stop the process, how can you effectively guide it?
For the past year, the Genetics Research Advisory Committee, a group of Oregon health care professionals and policy-makers, has been exploring that question in the course of deliberations on the use and disclosure of genetic information, knowledge about an individual or family obtained through testing of an individual's DNA sample.
Precedent for States
The policy influenced through these deliberations promises to affect the life of every Oregonian. Also, what happens in Oregon will set an important precedent for what follows in other states because at the moment there is no federal statute to protect genetic privacy.
Every human cell (hair, blood, fingernail parings and body tissue) carries a complete set of a person's genes. Consequently, genetic profiles won't be hard to come by. For that reason, genetic privacy is sure to become the main constitutional issue of the next century.
In 1995, Oregon was the first state in the nation to adopt a Genetic Privacy Act. The novel law defines a DNA sample as being the property of the person from whom the sample was collected. The use of "property" in this context raises concerns that the current law might inhibit genetic research and the development of the biotechnology industry in Oregon.
Of particular interest to companies is the language that establishes that each individual owns his or her own DNA and thus is entitled to exercise autonomy over its use. Researchers would like to strike that clause.
Those advocating a change in the Oregon statute are concerned that the application of property rights to genetic tissue has not yet been worked out in the courts. Consequently, they are proposing to replace the property clause with more specific language that lays out requirements for informed consent and confidentiality penalties for violations of privacy.
Francis Collins, head of the National Institute of Health's Human Genome Project, predicts that by the year 2040, comprehensive genomics-based health care will be the norm, disease predisposition will be determined at birth, individualized preventive medicine will be available and largely effective, illnesses will be detected early by molecular surveillance, gene therapy and gene-based drug therapy will be available for most diseases, and the average human life span will reach 90 years.
Access to Information
As we turn Huxley's "Brave New World" into our own reality with the power to accurately identify a host of genetic conditions, many of which will have no treatment, the question we need to ask ourselves is: Who should have access to this information? And under what conditions?
The Genetics Research Advisory Committee deliberations are scheduled to conclude next month followed by a set of specific recommendations to state legislators when they convene in January 2001. Committee members and legislators need to know how Oregonians feel about their genetic privacy.
Should research labs be free to sell their DNA to pharmaceutical companies? How should people be allowed to protect the information encoded in their DNA? Should a pharmaceutical company own the rights to a person's DNA without that person's informed consent? Who owns the information needed to assemble and run a human body -- whether yours, mine or anyone else's?
Extending the debate on issues such as these beyond the corridors of Washington and the boardrooms of corporate America and the laboratories of scientific research centers -- and into the schools, homes and communities of informed and engaged citizens -- creates the kind of deliberative democracy with the power to steer the application of genetic research and technology in directions that are responsive to public values.
There is still time for our values and ethics to catch up to the technology. I try to remember that eugenics is not the inevitable outcome of this technology. Neither is the technology necessarily the root of intrafamilial problems and discrimination. But that's precisely what could happen if we let it.