Hello GINA….

“It seems to me, Golan, that the advance of civilization is nothing but an exercise in the limiting of privacy.”

Janov Pelorat ~Asimov’s “Foundation’s Edge”.

                Before I begin this “Special Report Rant”, I wish to share this link with you that was sent to me by an old friend of mine from Canada who, unknown to him, has become my unofficial science advisor. He keeps me honest and doesn’t allow me to use “Bad Science” and insist that during our debates I “Bring my ‘A’ game”. I’ll admit I was at first happy about this signing of HR 493 so please before I begin take a few minutes to look at this bill.

http://thomas.loc.gov/cgi-bin/bdquery/z?d110:h.r.00493:

                On its face value HR 493 is an excellent point that I talk about from time to time. That point is the right to privacy. As an American citizen I can’t forget the debates of the past that rages to this day as to what “Privacy” we as Americans do have. I look at what I consider the basic document of record, the Constitution, which designates that our rights come from our creator, NOT the government. That we need the knowledge of the genome project is not in debate. I relish giving my genes for study if for nothing else that it may one day lead to a cure for my Type 2 Diabetes (yes I’m a member of the race “Obese-American” and I add the world threatening problem of “Globesity”).

                Medical and scientific advances are vital to our growth and understanding of the world around us. Our basic curiosity is the drive that leads us to the next ridge in our development and strives to make the world better for the next generation so I wish to take the science part out of the debate (yes Morvis I know that an integral part of it but we both agree the science is needed).

                First I must say that we, as Americans do not have the guaranteed “Right to Privacy”. This fallacy has its Genesis in the 1803 court decision “Marbury v. Madison”, which established the dangerous precedent of “judicial review,” that the courts decide whether a law is or isn’t constitutional. From there it degenerated into courts deciding what “Constitutional rights” are. The Supreme Court has ruled that people have the right to burn the flag as “freedom of speech”; that women have the right to abort their babies as the “right to privacy”; that strippers can perform as “freedom of expression.”  These “activist” courts, driven by a belief in a “living” and “flexible” Constitution, are hailed as being so concerned with rights.    

                The 4^th amendment to the Constitutions states, “The right of the people to be secure in their persons, houses, papers, and effects, against unreasonable searches and seizures” Enumerates, IT DOES NOT GRANT, the true right to privacy. For proof the govt. regularly violates this right look no further than the “Patriot Act”. To carry out this abject travesty  federal agents are empowered to seize your financial, library and MEDICAL RECORDS (funny how this exemption is left out of HR 493), needing only approval from the Foreign Intelligence Surveillance Court (a secret, completely unaccountable-to-the-people court with sealed records). Courts are so determined to protect your right to burn the flag, but not your right from the FBI to secretly wiretap your computer once they claim you’re a terrorist. Ah, but the Patriot Act requires them to notify us? Sure, but its architects were smart enough to leave a loophole. Federal agents need only claim that you’ll tamper with or destroy evidence, and then they can almost indefinitely postpone notification.

                Before I run headlong over the abyss and into another topic let me return to the subject at hand. As medical technology advances, scientists and medical professionals are better able to understand the genetic compositions that contribute to various diseases and predispose those with a certain genetic makeup to those diseases. These advances are having some very positive effects, allowing patients to take a preventive approach to medical care and medical professionals to predict and screen against various problems. On the flip side there is evidence that the advances are also creating some negative effects. Employers are increasingly basing their hiring and firing decisions on the results of genetic tests that disclose which employees are at a higher risk of having medical problems down the road. Additionally, insurers are using the results of genetic testing to deny insurance coverage and raise premium rates.

                I’m not sure of the situation in the rest of the world but here in America when we decide on a health care provider it is assumed that we have a patient doctor confidentiality agreement that is so sacrosanct that if any health information is leaked it could cost the doctor his license, a huge fine and even including jail time at the federal level. Of course there are the exemptions such as a court order or public health issues but these exemptions must be granted with probable cause.

                The sad part is that America already have federal laws covering genetic discrimination. The Americans with Disabilities Act (ADA) protects against discrimination based on genetic disabilities in the workplace. While the ADA doesn’t explicitly address genetic predisposition discrimination, in 1995, the Equal Employment Opportunity Commission (EEOC) (For our overseas friends this is one of our quaint “wield a club to beat the big business to our will” govt. agencies) issued an interpretation of the ADA that stated that the agency considered such discrimination the same as discrimination based on an impairment. Admittedly the EEOC’s interpretations don’t have the force and effect of law but who out there can give me an example when the EEOC actually lost a court case against a business? (To Al Sharpton and Jesse Jackson, Thank you so very, very, very, very, very much!) <The sad part is these two are not even smart enough to recognize the sarcasm in that statement. 

                Since the US courts are big on implied consent there also is implicit protections against genetic discrimination contained in Title VII of the Civil Rights Act of 1964. Once again, thank to science, studies have found that specific races and ethnicities are genetically predisposed to certain diseases. Some believe that Title VII protects against discrimination based on those diseases or a genetic predisposition to the diseases because the diseases may be linked to race or ethnicity. Even citing these two federal statues there were still concerns on privacy.  

                In response to those concerns, the Senate already has  1 bill and 1 executive order in place to prohibit discrimination by insurers and employers, Executive Order 13145, (nice to see them trying to protect govt. workers), and the Health Insurance Portability and Accountability Act of 1996 (HIPAA) which applies to employer-based and commercially issued group health insurance only.  HIPAA is the only federal law that directly addresses the issue of genetic discrimination.

                Under GINA, an employer may not discharge, refuse to hire, or otherwise discriminate against an employee based on genetic information. It also states additionally that, “an employer may not request, require, or purchase an employee’s genetic information, with few exceptions, including for compliance with the Family and Medical Leave Act (FMLA) or state family and medical leave laws and for law enforcement purposes”. All these specification are already covered under existing state and federal laws. Why do we need this one? Is it an attempt to bring all states into compliance with government requirements? We as Americans have already had a civil war over states rights vs. government rights. Any genetic information that is obtained by an employer must be kept confidential and on separate forms and in separate medical files. With the new frontier of cyberspace will these “Different personal files” be linked eventually to a central clearinghouse of personal information on everyone of us?

                Those who support HR 493 believe that the expanded protection will prompt more people to submit to genetic testing. The increase in genetic testing will promote a preventive approach to medical care and will further research in preventing and curing diseases. I do hope this is true but following human nature and America’s current culture of “entitlements” and their love of a lax court system that seems to reward bad behavior and remove personal responsibility from the equation we will be overrun with frivolous lawsuits that will be decide in the courts that are controlled by the very group who wrote HR 493 to begin with.

                Another belief held by the opponents also is that the sheer term “Genetic Information” is too broadly defined. I have read the entire bill and do agree on this point. For example “high cholesterol” will fall within the definition. While its known there are 2 sources for this problem, genetics and diet, will the government one day decide that the diet source is nothing more that bad behavior and in their magnanimous compassion declare “We must take control of your diet to ensure you live a long and healthy life”? I also express concern that the cost of insurance for healthy people will skyrocket as insurers try to make up for the cost of insuring at-risk people at the same cost as those who don’t have a genetic predisposition to certain diseases. I can hear the proclamations now “WE MUST HAVE TOTAL EQUALITY IN EVERYTHING!!!”

                One fact is being overlooked in the entire situation. Once again here is where “Bad Science” plays a crucial role. Not only is this discrimination unjust, it is scientifically inaccurate. Genes can tell us only part of the story about why some people get sick and others do not. Even if we were able to know exactly what genes a person has, we still would be unable to predict their future health needs. This is because many genetic tests predict with limited accuracy that a disease may become manifest at an undetermined time in the future. Because the severity of many diseases such as sickle cell anemia and spina bifida varies widely among individuals, a genetic prediction cannot foretell how disabling the disease will be for a specific person. While it’s true that I am a diabetic does that mean I will eventually develop diabetic neuropathy?  Will I spend most days in a diabetic induced coma? Will I eventually lose my arms and legs? No one knows for sure BUT I seriously doubt it because I exercise my own personal responsibility and take care of what I need to do. Some things a diabetic needs to avoid so I don’t do them, Period.

                One last shot across the bow at the insurance companies, they are not disclosing to the public how the set their rates. Unlike infectious diseases, genetic conditions exist at a fairly stable incidence in our society. The only manifestation of “an epidemic of genetic conditions” can only be tied to population growth. Thus, they are already reflected in the actuarial tables used by insurers to establish rates. It is misleading for insurers to suggest that their financial solvency will be jeopardized if they are obligated to insure people at risk for genetic conditions. In fact, insurers have always insured people at risk for genetic conditions. Previously, however, it was not possible to identify those people at risk for genetic conditions before they become they became ill with the disorder.

                Bottom line for me is you must leave the scientist alone to do what they need to do. If one day it is possible to cure a genetic defect in a person’s family tree it will be because Scientist were allowed to use their own inherent skills, talents, intelligence, and desire to find the answers to all life mysteries and not because the politicians had to beat us over the head with a club to do things that have absolutely NO bearing on research and development. We must take care of ourselves and do the moral and correct things without the government attempting to be our moral compass.

                My line to live by for the week….             

“WE DO NOT NEED CONGRESS TO BE THE LIFEGUARD IN OUR GENE POOL”