Genes r us.

As scientists unravel the mysteries of life and reveal genetic links to diseases such as cancer and Alzheimer's, lawmakers wrestle with the ethical, social and moral implications that arise from applications of that research.

Brave new world? Or basis for a new kind of discrimination?

Genetics is an explosive field, and scientists are making amazing discoveries almost daily as they plumb the mysteries of life itself.

Genetic technology has opened a new era of medicine, allowing doctors to achieve near miraculous cures. But the same insight into the genes that yields those cures could result in discrimination as more accurate testing lets employers and insurers identify potential disease victims who levy a cost on both.

Right now a strand of hair or a drop of blood contains everything a researcher needs to determine whether a seemingly healthy person is at risk for any number of genetic diseases. It's information many employers and insurers want to know. It's information that can disrupt lives.

As of this spring, a private company, Human Genome Sciences, mapped more than 45,000 human genes--microscopic combinations of chemicals that determine not only our hair color, eye color, how tall we will become and other physical attributes, but also how our bodies use food, the possibilities of developing cancer or whether we will die of a debilitating disease. In fact, other scientists have discovered one gene that, when mutated, may trigger as many as half of the major types of cancer.

"The future of medicine is genetic medicine," says Dr. Mary Ann Cutter, a specialist in medical ethics from the University of Colorado at Colorado Springs. Cutter was one of the people on a Colorado task force that proposed restrictions on the dissemination and use of genetic test results. The recommendations resulted in the Colorado General Assembly's banning the use of genetic information by insurers.

Laws for a New World

Thirteen states--Alabama, Arizona, Florida, Iowa, Louisiana, Maryland, Montana, New Jersey, North Carolina, Ohio, Rhode Island, Tennessee and Wisconsin--have passed genetic testing laws. Most of the laws--such as those in New Jersey, North Carolina and Louisiana--are narrowly drawn and attempt to prevent a repeat of the discrimination of the 1970s when people were denied insurance or jobs because they tested positive as carriers of sickle cell anemia, a genetic disease found primarily in African Americans. Carriers do not necessarily manifest symptoms of the disease; they "carry" a bad gene and can pass it on to their children. Testing for such "carriers" was instituted under the Sickle Cell Anemia Control Act--the first federal legislation concerned with genetic disorders, enacted by Congress in 1972. The act was intended to educate people about the disease and inform parents if they were carriers of the disease and what to expect for their children, who could be potential victims. However, the information was used in other ways.

Airlines grounded some black employees who, tests showed, carried the trait. Since the blood of a person suffering from sickle cell carries less oxygen, airlines feared employees would have fainting spells during plane depressurization.

Some insurance companies charged higher premiums to people screened as sickle cell carriers, and the U.S. military considered deferring carriers. It wasn't until 1981, in fact, that the Air Force Academy, as the result of a lawsuit, stopped excluding healthy cadets who possessed a genetic marker for the sickle cell trait.

Temptation to Discriminate

With the help of state statutes outlawing discrimination on the basis of sickle cell genetic tests as well as increased knowledge about carriers and genetic diseases, that particular type of discrimination ended. Advocates of this legislation believe, however, that employers and insurers can still be tempted to discriminate against people found to have genes that could lead to physical disorders.

Tracing bad genes has become the focus of numerous state and federal programs. Right now, newborns are screened in all 50 states for at least two genetic diseases. More people are encouraged to have genetic tests run when certain inheritable traits are found in their families or when they have a child who has a major genetic fault. In some cases, genetic tests can inform a person of a potential health problem and allow early treatment. In general, tests can run between $700 and $800, excluding newborn screening which has become less expensive. It is predicted that, with continuing advances in technology and science, costs will drop to between $100 and $150 in the next five to seven years--making mandatory genetic testing by companies or insurers cost effective.

Ohio Limits Insurers

In Ohio, a law sponsored last year by Representative Wayne Jones prohibits insurers from requiring potential clients to submit to genetic tests as a condition of coverage. Nor can companies deny insurance based on genetic test results. "This is a national issue," Jones points out, "and we're a little bit ahead of the curve."

Jones, who also helped rewrite the state's health laws in 1992, says his interest in genetics was piqued when a woman from his district, whose father had been diagnosed with Huntington's disease (an inherited condition that causes mental and physical deterioration usually between the ages of 40 and 50), was denied insurance because of the 50 percent chance she had inherited the disease.

That woman, Theresa Morelli, told Ohio legislators that scientific advances that allow people to know of their genetic predispositions and risks won't help anyone "if the price is to lose your insurability."

During testimony on the legislation, a personal injury lawyer from Akron told of a client who had been denied workers' compensation on a claim for a heart condition because the board believed his problems were the result of "genetic arteriosclerosis," which contributes to heart disease.

A former Ohio deputy commissioner of insurance, Jones points to those examples as reasons he introduced the legislation. Insurance representatives testifying on the bill assured legislators that genetic test results were not routinely used by the industry. They did not, however, want that potential underwriting tool denied them should they decide to use it. The insurers also emphasized during Ohio testimony the potential for clients to "game" the system, buying large amounts of health or life insurance against a disease they know they have and that will manifest itself later in life.

"The insurance industry put on a full-fledged, awesome attack," Jones recalls. "l think they wanted to stop this bill because, as genetic testing is refined, [insurers] could use it to screen out basically all risks by discriminating against people wanting to buy policies."

Ohioans for Genetic Fairness, a coalition of representatives from the state associations for epilepsy, diabetes, arthritis, cystic fibrosis, sickle cell anemia and Huntington's disease, supported the bill.

The new law also sets up a task force to study the evolving field of genetics and its ethical, legal and moral implications.

Wisconsin adopted a similar law in 1992, and, like Ohio's, it applies to health and disability insurance, not life insurance, in order to keep people from "gaming" the insurance companies.

Genetics in the Workplace

Parts of the Wisconsin law, as well as statutes in Iowa and Rhode Island, apply to employers who might use genetic tests as a basis for hiring or firing workers.

The Office of Technology Assessment, a congressional research arm, said that in 1990 several Fortune 500 companies either were using or had used employee genetic monitoring or screening.

With genetic monitoring, employees are periodically tested in order to evaluate changes in genetic material such as chromosome damage or evidence of increased mutations that might have occurred in the course of employment. Such changes may be due to exposure to hazardous substances and could indicate increased risk of future illness.

In genetic screening, job applicants or employees can be tested to see if they have a predisposition to an occupational illness or general inheritable conditions that could affect future job performance and company health insurance costs.

With genetic tests becoming cheaper and more accurate, policymakers fear they will become more widespread and could lead to discrimination in the workplace. They point to the speed with which businesses incorporated polygraph, drug and HIV testing.

Representative Richard Running, who sponsored the Iowa law banning mandatory genetic tests in the workplace, says his efforts were spurred by information that "a few companies were using genetic testing" to determine which potential or current employees might become unfit for work or might incur higher medical costs and absences because of a genetic fault.

"Although it wasn't happening yet in Iowa, I wanted to prevent discrimination on a genetic basis," he explains. "And I thought it was a good time to get legislation passed before genetic tests became a predominant business practice. Once something like that is made part of a hiring procedure, it's hard to eliminate."

Believing a bill dealing with both employment and insurance might fail since "the [insurance] industry is very powerful in this state," Running concentrated on genetic testing for employment, but hopes to "add insurance [restrictions] in the future." Iowa's law does allow employees to request genetic testing.

Legislation passed in Rhode Island in 1992 also prohibits employers from requiring genetic tests.

As for other state actions:

* Arizona and Oregon were the first to pass genetic testing legislation by amending existing laws in 1989 to include restrictions on the use of genetic information. Arizona added "genetic" to its list of conditions that insurers may not consider when assessing applications or determining rates. Oregon added genetic screening to its list of tests employers may not require as conditions of initial or continued employment.

* Montana passed legislation in 1991 prohibiting discrimination in insurance underwriting on the basis of genetic condition.

* In 1992, Florida created a new section in its code requiring informed consent for genetic analysis and confidentiality of test results.

* The California Legislature passed sweeping legislation in 1991 that would have prohibited employers and insurers from using genetic tests to deny jobs or insurance coverage. The bill was opposed by business, and vetoed by Governor Pete Wilson.

Statutory protection from genetic discrimination is still in its infancy. Only a handful of states have addressed the issues of privacy, discrimination and unauthorized use of genetic test results.

Today, many state laws regarding genetic testing refer only to its use in prenatal or newborn screening or in proving parentage. DNA testing in criminal cases also has been accepted in the courts of 38 states.

Although Representative Jones of Ohio introduced slightly restrictive legislation on genetic testing--limiting how test results can be used--he is excited about the field. "The Human Genome Project [initiated by the federal government to map all human genes] may well be making some of the most important discoveries ever. There are a lot of important issues around this that aren't being exposed as they should be. There are the good things like making lifestyle changes if you have a gene that leads to cancer or making important parenting decisions based on genetic facts.

"But people testified during the hearings on the bill that they were afraid to take a genetic test because they would be, basically, branded," he says.

"In Ohio, we have a start in looking at the ethics and responsibilities that go with this awesome new science."

Dianna Gordon is an assistant editor of State Legislatures.