Did anyone actually read GINA (Genetic Information Nondiscrimination Act) before lauding it for protecting the public or condemning it as over-regulation?

From GINA at The Library of Congress:

Prohibits a group health plan from requesting or requiring an individual or family member of an individual from undergoing a genetic test. Provides that such prohibition does not: (1) limit the authority of a health care professional to request an individual to undergo a genetic test; or (2) preclude a group health plan from obtaining or using the results of a genetic test in making a determination regarding payment. Requires the plan to request only the minimum amount of information necessary to accomplish the intended purpose.

So, according to this:

1. Health plans can require the results of a genetic test to make a decision regarding payment.
2. Assuming having one’s genome available to make medical decisions makes health care more effective and efficient, premiums cannot be adjusted to account for the savings.

Um, isn’t this is the worst for both effective health care and patient fairness? Doesn’t this mean that health plans can simply demand any genetic test when deciding payment (and hold that decision hostage to get that test… and what if a decision is urgent)? Doesn’t this mean that health care will be institutionally less effective because rather than instituting a single, preventive genomic test to be consulted to make better medical decisions for one’s entire life(which GINA makes illegal), instead, patients will only get ad-hoc and myopic genomic tests as demanded by health plans for payment decisions? Won’t this make health care less effective while creating a new market for inefficient, interventionist specialty genomic tests?

So, what happens when a project like the Coriell Personal Medicine Collaborative shows that using genomic personalized health care makes health care better and cheaper?

I’m embarrassed that I relied on the hype surrounding GINA and didn’t read the law to form my own opinions.

Further, if I’m right about this (I want to consult a lawyer),  I’d be deeply embarrassed for the journalists and industry representatives who should have noted this rather than publishing fluffy, feel-good fed PR. Hypothetically. I’m going to get a legal opinion before I start stomping around, naming names, and posting links!

Recently, President Bush signed GINA, the Genetic Information Nondiscrimination Act, into law. GINA makes it illegal for employers or health insurers to discriminate based on genetics. Virtually the entire genetics community has lauds this legislation, yet few have written why its wrong that employers and services review objective facts to make decisions.

“It’s not fair…” but why?

Health Care and Genetic Testing

Modern health care has evolved into more social infrastructure than private living expense, like education.

Could you imagine treating our intellectual health like our physical health? That we only learn to react to emergencies? That people are loathe to reveal a need for learning lest they are ostracized by educators? That higher learning is an elite, private service while most wallow in ignorance and fear?

Yet this is health care is today. People hide from an institution that will take their money, but avoid providing care.

Health insurance is still modeled to pay for individual emergency medical interventions. The old idea is that these interventions are rare, but if needed, are both expensive and vital —too vital to ignore, yet too expensive for any individual to afford.

The new idea is that with genomics, is not just that disease can be prevented, but that humans can be improved. It’s not “just another treatment,” it’s a fundamental shift of what health is.

I think that health insurance companies should know our genomes so that we can best plan for and provide preventive care. Rather than hiding risks, we’ll actively reveal them. Why? For better treatment. To prevent that risk from realization. To prepare for the uncommon yet necessary support one will need to continue to be a functional member of society.

But then, these won’t be insurance providers, but Health Providers.

But when an individual’s health is no longer a private asset, the idea that birth is outside societies jurisdiction must be revised. Already, we demand that life is not endangered irresponsibly . Safety isn’t optional. Ending life is a crime. One is liable for not applying the latest advances in safety and health. We fear ending life, but the chronic geometric consequences of creating it are taboo.

We don’t consider an individual’s intellect to be private. We cooperate to run schools and universities to “preemptive” learn about our world. Why shouldn’t we “preemptive” live in our world, too?

Addenum:

Very few health professionals are getting this yet. One who does is Dr. Steve Murphy of Helix Health. I highly recommend his blog: The Gene Sherpa.” Steve doesn’t necessarily share nor endorse any ideas I’ve written above .

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Recently, President Bush signed GINA, the Genetic Information Nondiscrimination Act, into law. GINA makes it illegal for employers or health insurers to discriminate based on genetics. Virtually the entire genetics community has lauds this legislation, yet few have written why its wrong that employers and services review objective facts to make decisions.

“It’s not fair…” but why?

Under what conditions would an employee benefit from a genetic test mandated by an employer? If an employee had a risk of illness, would the employer be obligated to provide preventive medicine? Would the employer be obligated to better fit employment to people based on tests?

Unfortunately, most employment doesn’t work this way. Our modern economy trains and treats our working and middle classes to be interchangeable automatons. Why invest in a disposable, mass-produced part?

“All people equal” —perhaps the most revered human curse in modern history.

So until we all work at Google, employers who proactively and responsibly invest in preventive medicine for their employees through genetic testing is not likely for the average person.

However, voluntary employee genetic testing can entirely appropriate for some specialized jobs. For example, when you are an astronaut assigned to critical mission in space, you had better not have a 90% chance of dying of a heart attack during the mission. Oh… I guess the scene where Vincent dies in space and the mission is aborted at the cost of decades and trillions… was cut.

Maybe if society impressed into Vincent’s mother that creating a life is subject to enormous social responsibility and is not a whimsical selfish accident, Vincent wouldn’t have suffered.

Notes: Gattaca.

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Recently, President Bush signed GINA, the Genetic Information Nondiscrimination Act, into law. GINA makes it illegal for employers or health insurers to discriminate based on genetics. Virtually the entire genetics community has lauds this legislation, yet few have written why its wrong that employers and services review objective facts to make decisions.

“It’s not fair…” but why?

Genetic Tests Unfairly Favor the Employer

Scenario: many of my employees complain of condition X. I test their genes. The tests claim that the majority of the employees are:

• “40% susceptible” to that condition. I cast doubt on my employee’s testimonies because they were not genetically predisposed. Thus, I refuse liability.
• “300% susceptible” to that condition. I cast doubt on the claims environmental hazard claim because they were genetically predisposed. Thus, I refuse liability.

Seem too slimy to be possible?

Ok, pick a common work-related condition: Carpal Tunnel Syndrome. Now pick a job where Carpal Tunnel is an obvious environmental hazard: Railroad Bolt Pounder. Say an employee is diagnosed with Carpal Tunnel, has surgery, and returns to work in three weeks. Say I’m the employer, and after the surgery which I had already approved, I mandate that my employee must undergo a genetic test to provide “additional, objective medical information to determine whether or not your condition is work-related.” The results of that genetic test aren’t interpreted as percentage-risks for a specific disease, but look like this:

“This individual does not possess either the duplication or deletion of thePMP-22 gene associated with CMT1A and HNPP respectively. The analyses performed here also did not detect any DNA sequence alterations in the coding region of the PMP22 gene associated with a wide spectrum of peripherial neuropathies and the TTR gene causing a variety of Amyloidosis syndromes. Therefore, this individual is unlikely to be affected with or predisposed to developing the disease phenotypes of CMT1A, HNPP, CMT1, and TTR-associated Amyloidosis syndromes.”

Seem even more outrageous?

Yet, this is the exact scenario of Gary Avary of Nebraska, an employee of Burlington Northern Railway (BNSF). A doctor diagnosed Gary with work-aggravated Carpal Tunnel Syndrome and recommend surgery, which Gary’s employer approved. Gary received the surgery and returned to work after a three week medical leave.

Two months later, BNSF subjected Gary to a genetic test regarding his predisposition to Carpal Tunnel without his permission.

• “Nurse Derails Genetic Testing”, LA Times, 2/25/01
• Athena Diagnostic’s Carpal Tunnel Syndrome Evaluation (the test used in this story)
• Sample Test Results for Carpal Tunnel Syndrome from Athena (pdf)

Quick Quiz: Gary has Carpal Tunnel Syndrome. Gary tests negatively for a mutation associated with Carpal Tunnel Syndrome. Does Gary have Carpal Tunnel Syndrome?

Without GINA, BNSF says: no. GINA “helps” employers like BNSF score higher on my quizzes.

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Recently, President Bush signed GINA, the Genetic Information Nondiscrimination Act, into law. GINA makes it illegal for employers or health insurers to discriminate based on genetics. Virtually the entire genetics community has lauds this legislation, yet few have written why its wrong that employers and services review objective facts to make decisions.

“It’s not fair…” but why?

Irrational Bureaucratic Risk Abhorrence

The problem with institutionalized testing is that institutions tend to be irrationally risk adverse. This leads to social inefficiency and destabilizing stratification.

The problem is that people confuse what’s probable with what’s true.

Quick Quiz: Research shows that mutation X is strongly correlated with low intelligence. I am intelligent. I have mutation X. How intelligent am I?

And here’s the problem: how does society learn about one’s intelligence? am I admitted to school? employed? funded? will the guardian bureaucrats of society’s fine institutions be willing to risk their admission statistics and resources to learn how successful I could be?

Historically: NO. Thus, social injustice.

But maybe you think something silly like that institutions can or even try to reward aptitude, effort, and loyalty despite unrelated negative evidence like genetic test scores. So how about this one:

Quick Quiz: research shows that drug X is strongly correlated with poor job performance. I perform my job well. I fail a mandatory drug test for X. How well do I perform my job?

Guess who gets fired, not promoted, or not hired.

But you say: oh Andrew, drug use is a choice and genes aren’t and also Regan said drugs are bad because I learned that in DARE and so your example isn’t relevant.

Well, expression of intelligence is a choice too. The historical norm is that otherwise highly qualified people are neglected because they don’t have the right genes… I mean parents. Irrational risk-adverse discrimation is the rule because people believe “rational” means “justifiable when challeged.” Our challenge is to create policy to check that rule. GINA does.

Notes: I don’t have any such mutation, nor have I failed any drug test.

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The Senate passed the Genetic Information Nondiscrimination Act (GINA) on April 24, approving by unanimous consent an amended version of H.R. 493, which passed the House April 25, 2007 by a vote of 420-3. The House is expected to take up the measure again quickly before sending it to President Bush to sign the measure into law.

“After a very long wait, Americans can now be confident that their genetic information cannot be used by health insurers or employers in harmful or hurtful ways,” says Kathy Hudson, director of the Genetics and Public Policy Center, established at Johns Hopkins University by The Pew Charitable Trusts. “Our challenge now is to make sure that doctors and patients are aware of these new protections so that fear of discrimination never again stands in the way of a decision to take a genetic test that could save a life.” … Continue Reading »