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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
Public policy initiatives and increased physician awareness are neededto maintain a healthy balance between the promise of genetic engineeringand the potential for genetic discrimination, a Stanford/Veterans Affairs(VA) physician maintains. His assertion is based on new, unpublished findingsfrom his own research, as well as on data he and others published in 1992and 1996.
Genetic discrimination is already occurring in insurance and employmentsettings 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 associateprofessor of medicine at Stanford.
"The storage of genetic information, in DNA banks, like the onemaintained by the Department of Defense, has already produced importantproblems. There have been several courts-martial of people who haven'tagreed to contribute to the Department of Defense DNA bank," he said.
In addition, his new findings suggest that physicians, many of whommay be unaware of the dangers of genetic discrimination, are being askedto sanction the use of genetic tests as a "medical necessity,"Billings said. "This important change may increase the incidence ofgenetic discrimination."
Billings spoke at a session entitled "The Challenges to Civil LibertiesPresented by Human Genetics Research" at the annual meeting of theAmerican Association for the Advancement of Science in Seattle.
Public Policy Reponses Have Had Limited Effectiveness
While key issues related to genetic discrimination are being playedout in laboratories and the courts, public policy responses are takingshape in both administrative and legislative spheres, Billings said. Forinstance, the National Association of Insurance Commissioners has takensteps toward developing a position on the use of genetic tests in insurancematters. However, such efforts have had limited effectiveness, for severalreasons.
"The first reason is that the insurance industry has an enormousamount 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 foundnot only that consumers are generally unaware that the insurance commissionersoffice might be of some help to them, but also that insurance commissionersthemselves generally don't think this is an important issue and are notreally paying attention to it," he said.
Some 20 states have adopted legislation to protect consumers, primarilyin the area of health insurance, Billings said. In California, for instance,consumers should direct complaints about infringement of the current lawto the office of the insurance commissioner. Civil and criminal penaltiescan arise if genetic discrimination is shown to have resulted in unfairhealth insurance practices. Consumers are often afraid, however, that ifthey make a public complaint about some genetic issue, they might ultimatelybe 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 sensesee themselves as vulnerable and stigmatized, and not just genetically.Some of them fear socioeconomic repercussions as well. So they don't wantto be further marginalized by having to engage in some sort of quasi-publicprocess for which there is, unfortunately, no guarantee that they are goingto 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 asif they are ill--the genetic underclass."
Framework in Place That May Lessen Genetic Discrimination
Although the current situation presents difficulties, Billings doesnot characterize it as hopeless.
"I think that not only in proposed legislation, but also in effortsto enhance the protections provided by the Americans With DisabilitiesAct, there is at least a potential framework by which the burden of geneticdiscrimination might be lessened," he said. For instance, the stronghealth insurance legislation passed by the State of California makes itillegal to use genetic information for rate setting and policy exclusion.Another California bill, set to be introduced in February, will revivea previously defeated effort to extend these types of protections intoemployment settings, Billings said.
Federal legislation has also been proposed to deal with problems posedby the Department of Defense DNA bank, as well as by insurance discrimination.These types of efforts are needed to maintain the ethical balance, Billingscontends.
"Genetic testing is rapidly increasing. Consumer products [fortesting] are available or being developed. There is a great deal of investmentby the biotech and academic sectors. This offers promise for both predictiveand preventive strategies for reducing disease burdens. But the adversestigma of genetic discrimination is also significant," he said.
"Public policy efforts can create a framework to lessen the burdenof discrimination and thus make the balance between the positive and negativeoutcomes of genetic information more favorable for those who seek geneticinformation and self-knowledge."
Billings' research has been supported, in part, by Stanford's Programin Genomics, Ethics and Society