Congress is considering a genetic nondiscrimination bill. H.R. 493, also called the Genetic Information Nondiscrimination Act, or GINA for short, would prohibit employers from discriminating against an employee because of genetic information. It would also prevent health insurers from denying coverage to, or charging higher preminums for otherwise healthy individuals that have a genetic predisposition to a particular disease.
This is very important legislation and you should watch this closely. Why? Because genetic testing can give you very important information that may keep you healthy, but if you are afraid that your insurance will drop you, or you will lose your job if they find out the results then you are less likely to get the testing.
What if you could find out that you had a genetic predisposition to a certain disease like, cancer or Alzheimers, and there were steps you could take to prevent or dely the onset of the disease? Would you? Or would you be too afraid to get the test because of discrimination from your employer or health insurance?
Protection from genetic discrimination is a long time in coming and was needed yesterday. I may be biased because, at work, I provide genetic information that, if used properly, can keep people healthy. We regularly test the HFE gene for mutations that may cause hereditary hemochromatosis, an iron-overload disease, that if treated early can be prevented. I hate knowing that there are people who would choose not to know their genetic predispositions to disease just because they were afraid that it would negatively impact their employment or health insurance. I found this warning about hereditary hemochromatosis genetic testing from the American Hemochromatosis Society website:
Before you see your doctor to find out whether or not you have hemochromatosis, please know that a "formal" diagnosis of hemochromatosis on your medical records may put you at risk of being denied health insurance, life insurance, and long term care insurance in the future. Why? Because the insurance industry doesn't like "hereditary hemochromatosis" and what it can do to the body and it certainly doesn't like the kind of medical bills that it can create for the patient. It considers hemochromatosis to be a potentially fatal disease which will cost them a lot of money before the patient dies. Of course, hemochromatosis, when diagnosed early, does not cause organ damage or death, and the patient will have a normal life span. In addition, the patient is not going to cost the insurance company a lot of money. The problem is that the insurance industry is behind the times when it comes to judging insurability of a HFE-associated hereditary hemochromatosis patient.
They recommend that you purchase a kit that you can use to test yourself at home without alerting your health insurance.
An important point to make about most testing for genetic predispositions is that in many cases just because you have a mutation does not mean you will develop the disease. I cannot stress that enough. In the above case of HFE, we clearly state in our report that mutations in this gene only mean an increased risk of developing disease. They are people with mutations in this gene, and many other genes like it, that remain healthy. Another reason genetic nondiscrimination legislation is so very important.
Here is more from Reuters:
Supporters of a bill to bar discrimination against people because of their genetics have launched a push for congressional passage even as some business leaders oppose it, fearing a flood of frivolous suits.
Medical researchers are learning more about the genetic component to a variety of illnesses, and tests are being developed to determine predisposition to ailments. The bill is backed by lawmakers worried that employers or insurers with access to such data may discriminate against people who someday may develop illnesses that are costly to treat.
The legislation boasts strong bipartisan support and twice has passed the U.S. Senate by unanimous votes, the last time in 2005, but has languished in the House of Representatives. With Democrats taking control of Congress, however, its chances appear considerably brighter.
The measure would ban group health plans and health insurers from denying coverage to a healthy person or charging higher premiums based solely on a genetic predisposition to a disease. It also would prohibit employers from using genetic information in hiring, firing, job placement or promotion decisions.
There are people against this legislation:
Michael Eastman, the Chamber of Commerce's executive director of labor policy, said the bill would impose a new layer of regulations on medical privacy, still permit states to set their own perhaps different rules and would allow for excessive lawsuit damages.
"We have never said, 'Hell no,' to a genetic discrimination bill," Eastman said in an interview. "What we have said is if there is to be a bill, then it must be narrowly drawn to avoid administrative difficulties implementing it and to avoid the potential for frivolous litigation."
I am no expert on genetic discrimination litigation, but I fail to see how this could increase lawsuits against employers so much so that it should be rejected. If the legislation is poorly written, then it shouldn't pass. But I have not read anything yet to suggest this is the case.
I agree with Democratic Rep. Louise Slaughter:
"For the potential of genetic technology to be realized, we need to make genetic testing something that is commonplace, rather than something that is feared," Democratic Rep. Louise Slaughter of New York, a House sponsor of the measure, told the hearing.
And cannot stress enough the following words from Republican Sen. Senator Olympia Snowe of Maine:
"This is the first civil rights legislation of the 21st century."
Of course, the Catholic Church has no official stance on H.R. 493, but I will look to Popes John Paul II and Benedict XVI for guidance:
"Indeed, the biomedical sciences are currently experiencing a period of rapid and marvelous growth, especially with regard to new discoveries in the areas of genetics…. But if scientific research is to be directed toward respect for personal dignity and support of human life, its scientific validity according to the rules of each discipline is not enough. It must also qualify positively from the ethical point of view, and this presupposes that from the outset it endeavors to promote the true good of human beings as individuals and as a community. This happens when efforts are made to eliminate the causes of disease by putting real prevention into practice, or whenever more effective therapies are sought for the treatment of serious illnesses". -- Pope John Paul II
"The people of our time sensitized by the terrible vicissitudes that have covered the 20th century and the very beginning of this one in mourning, are able to understand that man's dignity is not identified with his DNA genes and that it does not diminish with the eventual presence of physical differences or genetic defects." -- Pope Benedict XVI
