Archive for April, 2008

If GINA Is Signed into Law

Posted in dna with tags , , , on April 27, 2008 by lukasa

You may have noticed that GINA, The Genetic Information Nondiscrimination Act, S358, passed the Senate on April 24, 2008. It goes back to the House for approval (though they already passed it last year). President Bush will probably sign it into law within a few weeks. Many headlines are crowing that the soon-to-be law will stop genetic discrimination. Senator Kennedy went so far as to say that this was the first time they had passed a law to stop discrimination before it started happening. Neither of these assertions are true. Although this is a hugely significant event to which we should all pay attention, the press for the most part is getting it wrong.

Misperceptions
Part of the problem is that no one really understands the significance of genetic information. We don’t know to what extent our genes determine who we are or what diseases we will contract. Famous scientists like James Watson (of Watson and Crick) would like us to believe our genes are our destiny; that simple equations may be drawn between our genetic makeup and what will happen in the future. As a result, common wisdom is that genes are an accurate predictor of disease and behavior. Scientists who are active today in disease research will tell you that this is not the case. Genes at best provide a predictive statistic, and in most cases, except the most blatant and well-known mutations, nothing is certain.

An Example
A disease like Cystic Fibrosis, for example, is actually rather loosely defined. It affects different organs, and even identical twins can manifest it differently. Currently there are about 1000 known mutations that can contribute to an individual contracting the disease. Say you have one of them. No disease. Say you have two. Ask a CF researcher if you’ll get the disease. “Which two mutations?” they will ask. You tell them. “We still don’t know,” they will answer, “but we can assign a rough likelihood, based on small amounts of patient data currently available. Preventive care is crucial, and with this foreknowledge of susceptibility, we can almost guarantee that you will never suffer the full effects of the disease.” Not the sort of answer that easily fits into a sound bite or American consciousness.

Lofty Ideals vs. Pragmatic Cynicism
The legislation itself states that it aims to encourage people to have genetic testing done so that more data can be accumulated and preventive care given, thereby reducing health care costs. This is a huge benefit. Millions of people will be able to live essentially normal lives because their genetic conditions can be managed early. Moreover, their reproductive choices will be better informed. However, this benefit is still contingent on intangibles that are difficult to legislate: trust and security. The reality is that we will always need to guard our genetic data for one reason or another. And the simplest way to do that in the present day is not to get tested at all. That way, the data simply doesn’t exist in the health care system. In the same way you won’t give your credit card to an online merchant you don’t trust, you won’t give your genetic data to a company you don’t trust.

The Rub
In a few decades though, the data available for research will have ballooned, and personal genome sequencing will be cheap. These events are right on the horizon, but GINA does not fully address them. Let’s take them one at a time.

Information Becomes Knowledge

With huge data sets will eventually come more knowledge about the relationship between genes and disease, as well as behavior. There will be much less uncertainty about effects. The temptation, nay the demand, from private health insurance, will be for a way to count genetic information as a pre-existing condition. If we continue to keep medicine fully private in this country, you should expect to see proposed amendments to GINA that weaken it’s provisions in cases where it has been shown that certain combinations of genetic markers have a greater than, say, 90% chance of manifesting a costly disease.

Technological Development is Accelerating
Cheap personal genome sequencing will obliterate security. If you drink from a glass in a restaurant, there will be enough information on the rim of that glass to sequence your genome. Anyone who wants your genome will be able to get it.

More Knowledge, Less Security
So we will have increased knowledge and decreased security. The problem is that it starts to become very difficult to prove someone has used a particular piece of information against you. All an employer or insurance company needs is an excuse for terminating you or dropping your coverage. Technicalities abound. Your employer and insurance will either have your genetic information or be able to infer it from other sources, and nothing can stop them from using this information in their overall picture of your value to them. Section 210 of GINA expressly allows them to use non-genetic medical information even if it relates to a genetic condition. So even if you are managing a genetic condition in a way that keeps your overall health costs down by a factor of 1000, an unscrupulous employer or insurance company may find a way to legally dump you.

A few more items to keep in mind:

  • GINA’s provisions only go into effect 18 months after enactment. So employers and insurance companies still have about a year and half to openly discriminate if state law is weaker than GINA.
  • The Secretaries of Labor, Heath and Human Services, and Treasury, still need to issue final regulations to guide the interpretation of the law in “an accessible format.”
  • The law severely limits awards. So insurance companies can use math to decide whether to honor the law.
  • Section 208(b) of the bill provides for a review 6 years after the date of enactment. In my view this is too long to wait.
  • Family history shall count as genetic information. This is a great start, but it is only the tip of the iceberg of ways to infer genetic information about an individual. This aspect will need to be broadened.
  • If previous civil rights legislation is any indication, this certainly will not prevent all discrimination. There will be many court cases, and there will be many people whose rights are violated who either don’t know they could win a lawsuit or don’t have the means to pursue one.
  • Insurance companies will rightfully perceive this law as a curtailment of their ability to measure risk, and they will find workarounds.
  • Most states already have laws on the books. Why has it taken Washington so long?

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