Public policy initiatives and increased physician awareness are needed
to maintain a healthy balance between the promise of genetic engineering
and the potential for genetic discrimination, a Stanford/Veterans Affairs
(VA) physician maintains. His assertion is based on new, unpublished findings
from his own research, as well as on data he and others published in 1992
Genetic discrimination is already occurring in insurance and employment
settings and is reaching into the areas of adoption and military service,
said Dr. Paul R. Billings, deputy chief of staff for the San Jose (California)
Clinic of the VA Palo Alto Health Care System and a clinical associate
professor of medicine at Stanford.
"The storage of genetic information, in DNA banks, like the one
maintained by the Department of Defense, has already produced important
problems. There have been several courts-martial of people who haven't
agreed to contribute to the Department of Defense DNA bank," he said.
In addition, his new findings suggest that physicians, many of whom
may be unaware of the dangers of genetic discrimination, are being asked
to sanction the use of genetic tests as a "medical necessity,"
Billings said. "This important change may increase the incidence of
Billings spoke at a session entitled "The Challenges to Civil Liberties
Presented by Human Genetics Research" at the annual meeting of the
American Association for the Advancement of Science in Seattle.
Public Policy Reponses Have Had Limited Effectiveness
While key issues related to genetic discrimination are being played
out in laboratories and the courts, public policy responses are taking
shape in both administrative and legislative spheres, Billings said. For
instance, the National Association of Insurance Commissioners has taken
steps toward developing a position on the use of genetic tests in insurance
matters. However, such efforts have had limited effectiveness, for several
"The first reason is that the insurance industry has an enormous
amount of power to swing this argument away from public oversight and regulation.
Second, through our own survey work and the work of others, we've found
not only that consumers are generally unaware that the insurance commissioners
office might be of some help to them, but also that insurance commissioners
themselves generally don't think this is an important issue and are not
really paying attention to it," he said.
Some 20 states have adopted legislation to protect consumers, primarily
in the area of health insurance, Billings said. In California, for instance,
consumers should direct complaints about infringement of the current law
to the office of the insurance commissioner. Civil and criminal penalties
can arise if genetic discrimination is shown to have resulted in unfair
health insurance practices. Consumers are often afraid, however, that if
they make a public complaint about some genetic issue, they might ultimately
be blackballed from getting insurance and might even lose their jobs.
"There's a great deal of fear about losing general access to rights,
opportunities or entitlements. These are families that in a greater sense
see themselves as vulnerable and stigmatized, and not just genetically.
Some of them fear socioeconomic repercussions as well. So they don't want
to be further marginalized by having to engage in some sort of quasi-public
process for which there is, unfortunately, no guarantee that they are going
to get a positive outcome," Billings said.
"If policy does not match advances in technology in this field,
we will see an increase in those who have no symptoms but are treated as
if they are ill--the genetic underclass."
Framework in Place That May Lessen Genetic Discrimination
Although the current situation presents difficulties, Billings does
not characterize it as hopeless.
"I think that not only in proposed legislation, but also in efforts
to enhance the protections provided by the Americans With Disabilities
Act, there is at least a potential framework by which the burden of genetic
discrimination might be lessened," he said. For instance, the strong
health insurance legislation passed by the State of California makes it
illegal to use genetic information for rate setting and policy exclusion.
Another California bill, set to be introduced in February, will revive
a previously defeated effort to extend these types of protections into
employment settings, Billings said.
Federal legislation has also been proposed to deal with problems posed
by the Department of Defense DNA bank, as well as by insurance discrimination.
These types of efforts are needed to maintain the ethical balance, Billings
"Genetic testing is rapidly increasing. Consumer products [for
testing] are available or being developed. There is a great deal of investment
by the biotech and academic sectors. This offers promise for both predictive
and preventive strategies for reducing disease burdens. But the adverse
stigma of genetic discrimination is also significant," he said.
"Public policy efforts can create a framework to lessen the burden
of discrimination and thus make the balance between the positive and negative
outcomes of genetic information more favorable for those who seek genetic
information and self-knowledge."
Billings' research has been supported, in part, by Stanford's Program
in Genomics, Ethics and Society