HOW SHOULD GENETIC INFORMATION BE HANDLED?

January 16, 2008

Article in St. Louis Dispatch by R. Michael Lowenbaum, James Romeis &
Dr. Tyler Reimschisel

R. MICHAEL LOWENBAUM - Managing partner, The Lowenbaum Partnership
EMPLOYERS SHOULD RELY INSTEAD ON VOLUNTARY WELLNESS PROGRAMS

The availability and use of genetic testing information is on the rise.

With the increased availability of such information, many employers have been tempted to use genetic information as a means to screen out job candidates whose predisposition to serious health problems may adversely affect health and workers' compensation insurance costs.

Even well-meaning employers whose goal is to protect potential or current employees from perceived hazards in the workplace can run afoul of state and federal legislation concerning disability discrimination and use of genetic information.

In addition to the long-standing disability discrimination laws, recently both the federal government and many states - including Missouri and Illinois - have enacted legislation regulating employers' use of genetic testing information. These laws prohibit employers from utilizing their employees' genetic information except in very limited circumstances.

I believe that genetic information is rarely, if ever, helpful for an employer to use, or even know. Instead, I would recommend a voluntary employee wellness program as a good alternative to control costs of employee illness, injury, and health care.

Such programs allow employees to have regular health exams, provide employees with information on ways they can avoid future illness and improve employees' general health awareness.

Such programs can benefit both employees and employers without unduly exposing the employer to legal risks associated with the use of genetic information.

JAMES ROMEIS - Professor of Health Services Research, St. Louis University School of Public Health

WE SHOULD CHANGE THE DYNAMIC FROM ADVERSARIAL TO ECONOMIC

Stories of having your health insurance cancelled or denied because of certain genes you or family members may carry are scary and terrifying. This business practice is shortsighted and probably increases overall health care costs and decreases overall quality of life.

It suffers from OGOD - one gene, one disease - thinking. But genetic variation may be a risk or a protective factor for disease; (it's) often complex; it isn't necessarily (a patient's) destiny and it usually involves environmental factors that interact with the genes for a particular disease, its treatment and outcome.

Rethinking this situation between health insurance and genes from adversarial to economic opportunity may have merit.

First, more comprehensive analyses of genetic and environmental risks for disease could produce results for the role of genes in early detection, better diagnosis, tailored treatment and prevention like we have never known it!

Second, large insurance data sets that include genetic information can teach us more about the course of diseases because they should have sufficient numbers of cases for assessing rare diseases and permit analyses of complex disorders. This type of information leads to better management of the genetic hand we have been dealt.

Insurance companies that embrace new knowledge about genetics should find themselves in a competitive advantage; enjoying increased market share and increased profits. A profit motive, coupled with very stringent external regulations, would function as incentives to protect patient privacy.

From a larger societal perspective, the overall result could lead to improved care and a healthier population.

DR. TYLER REIMSCHISEL - Neurogeneticist and assistant professor of Pediatrics and Neurology, Washington University School of Medicine

LAWMAKERS SHOULD PREVENT THE USE OF GENETIC DATA TO REFUSE INSURANCE

We have entered an exciting era in modern medicine as genetic testing provides opportunities for individuals to receive personalized medical care. Today, genetic testing for certain diseases can help physicians more accurately diagnose and treat some patients, typically making such tests cost effective in the long run.

Over the next decade, genetic testing will become an integral component of individualized treatment and therapeutic interventions.

Yet it is important to acknowledge that our ability to perform genetic testing has outpaced our complete understanding of the results.

We now have the ability to use genetic testing to help predict an individual's risk of developing a particular disease in the future. However, an abnormal genetic test result rarely means that an individual will inevitably develop the disease.

Genetic test results must be interpreted with caution, taking into consideration what is currently known about the genetic basis for the disease, environmental factors that may contribute to disease and the family history of the individual.

Given the current limitations in our understanding of many genetic test results, insurers should avoid using genetic information as a pre-existing condition.

Lawmakers also should prohibit genetic information from being used to determine an individual's eligibility for insurance.

It is also essential that lawmakers and medical directors of insurance companies receive ongoing education about the utility, limitations, and promise of genetic testing.