No Genetic Discrimination

SEARCH BLOG: DISEASE

This new law has been widely publicized. Former presidential candidate, Ron Paul, voted against the measure which would be consistent with a position that the government should not interfere in commerce and business contracts.

While I might normally agree with Rep. Paul on this, I believe that insurance is an unusual type of business contract because it is not really between and individual and a corporation. It is a shared contract with millions of others. Whether or not we have an insight into our potential, genetically-triggered, health issues, we must share the actuarial projected costs of all others who have purchased the insurance. In other words, we pay our money and take our chances... with millions of our closest strangers.

What this legislation does, besides allowing those with potentially debilitating and expensive diseases to join the shared-risk groups, is to enable each of us to identify those potentially debilitating and expensive diseases well in advance of their occurrence and take whatever action is appropriate to eliminate or reduce those risks.

For example, some individuals carry a genetic mutation that could allow excessive iron to build up in their bodies... hemochromatosis... if they have two copies of this mutation. "Hereditary hemochromatosis is an autosomal recessive disorder associated with increased intestinal absorption of iron and deposition of excessive amounts of iron in the liver, pancreas, and other organs."

It is the most common single-gene disorder in the U.S. white population. Approximately one in 250 to 300 white persons is homozygous for the hemochromatosis gene mutation [has two copies of the mutated gene], and at least one in 10 persons is a carrier for the mutation.

This condition may have been a benefit with iron-poor diets of the past, but now many foods are iron-fortified to prevent anemia in some other portion of the population while exacerbating the iron buildup in others [another example of government meaning well... according to U.S. law, thiamine, riboflavin, niacin, and iron must be added back into refined grain products]. Someone in their twenties who has this condition may not be aware of it until their fifties or sixties when they may begin to suffer premature organ failure... or other problems.

Under the old insurance rules, if a person found out about the condition through genetic testing, insurance companies could refuse to write new policies for that person. That meant that person would not be covered for all other possible health problems... a distinct disincentive to having the testing done. Now that person can be tested for this condition and still get insurance coverage. Would that be unfair to the rest of us? Well, in this instance, it would actually be a benefit to the rest of us.

Why? Because the "treatment" is simply to give blood on a regular basis to keep the level of iron in the blood lower. A pint every two or three months. The person with this potentially debilitation "disease" lives a normal life while possibly saving the lives of many others by donating a half-gallon of blood per year. And... insurances costs are reduced because the person with the condition does not suffer the debilitating side-effects and very costly treatments later in life.

Here's the story:

Congress Passes Bill Barring Genetic Discrimination
Action culminates more than a dozen years of legislative haggling

By Lisa Stein

GENETIC SECRETS: New legislation would bar insurers and employers from discriminating based on genetic information.

The House today passed a measure by a whopping 414-to-1 margin that would prohibit health insurers from canceling or denying coverage or hiking premiums based on a genetic predisposition to a specific disease. The legislation, the Genetic Information Nondiscrimination Act (GINA), also bars employers from using genetic information to hire, fire, promote or make any other employment-related decisions.

Rep. Ron Paul (R-Tex.) was the lone dissenter.

The measure, which unanimously passed the Senate last week, now goes to President Bush, who is expected to sign it into law.

"Since no one is born with perfect genes, we are all potential victims of genetic discrimination. This legislation marks the beginning of a new era in health care where a person's genetic information can no longer be used against them,'' bill sponsor Rep. Louise Slaughter (D-N.Y.) said after the legislation sailed through the House. "By prohibiting the improper use of genetic information, Americans will be encouraged to take advantage of the tremendous life-altering potential of genetic research.''

Slaughter, a microbiologist with a Master's degree in Public Health, introduced the first genetic antidiscrimination legislation 13 years ago.

Physicians now have access to more than 1,000 genetic tests that diagnose or assess the risk of developing potentially life-threatening diseases, including breast cancer, diabetes, heart disease and Parkinson's.

Consumer advocates hailed the passage of the package, which they say will close gaps in state laws and encourage Americans to take advantage of potentially lifesaving genetic testing that they may now shun out of fear of being sacked or denied health benefits.

"With the long-awaited federal passage of GINA, researchers and clinicians can now actively encourage Americans to participate in clinical trials without the fear of genetic discrimination,'' said Joann Boughman, executive vice president of the American Society of Human Genetics (ASHG). "Furthermore, under the federal protection provided by GINA, health care practitioners will be able to recommend appropriate genetic testing and screening procedures unencumbered by the fear of discrimination based upon the results."

In the 1970s, many blacks were denied jobs and insurance coverage because they carried a gene for sickle-cell anemia, including those who lacked the two copies of a mutation necessary to get sick.

In 1998, it was revealed that Lawrence Livermore National Laboratory in Berkeley, Calif., had secretly tested employees from the 1960s to 1993 for sickle-cell anemia, syphilis and pregnancy without their knowledge or consent (they were told that they were undergoing routine cholesterol screening). In 2002, the Burlington Northern Santa Fe Railway company paid three dozen employees $2.2 million to settle a lawsuit they had filed charging that the company had genetically tested them without their knowledge after they submitted work-related injury claims.

"This bill will allow every citizen and their physicians to benefit and participate in the progress the gene therapies provide for all of us in early treatment and the prevention of countless afflictions while maintaining their essential insurance coverage," Rep. Steve Kagen, D-Wis., a physician, said in support of H.R. 493 during the debate.

"Perhaps in the near future, I'll be able to rise here on the House floor and ask that we support legislation to bring an end to all forms of discrimination in health care,'' he added. "After all, our constitutional rights protect us against discrimination and should be applied to the area of health care throughout the industry – not just genetic information, not just skin color, not just body chemistry or the content and structure of one's bones – but to everything in the human condition and every pre-existing condition. Let's begin to put discrimination where it belongs – in the past."

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