The Right to Discriminate Based on Genetics
Very quietly, a bill has been working its way through Congress that bans Genetic Discrimination. The bill, the Genetic Information Nondiscrimination Act, has been passed by the House of Representatives with overwhelming support and will probably pass the Senate in the next few weeks.
While this bill has some powerful arguments behind it, it is a bad law and should not be passed. The freedom of association, the right to chose with whom you transact business or spend time with, is a basic human right – much like the freedom of speech and the right to your life. Respecting the freedom of association alone is a sufficient reason to oppose this bill.
The bill mandates that no medical insurer or employer may discriminate between employees based on their genetic predispostion towards disease. Dr Francis Collins explained the rationale behind the law thus:
We stand at a critical time in the development of medicine: the mapping of the human genome has provided powerful new tools to understand the genetic basis of disease, but our ability to fully realize the promise of personalized medicine is limited by legitimate fear of how this powerful information could be abused. Many people are afraid that their genetic information will be used against them and are unwilling to participate in medical research or be tested clinically, even when they are at substantial risk for serious disease. More than ten years ago, expert advisors to the genome project concluded that federal legislation is needed to provide all Americans with protection against genetic discrimination in health insurance and employment. Without it, we may never realize the full potential of genomic research, and, more importantly, of individualized approaches to health care.
Already, healthcare providers can test whether some of us carry DNA variants that pre-dispose us to certain diseases, and new research efforts could help to expand this capability and possibly offer better opportunities for preventive measures. If illness does occur, doctors will have more powerful tools to identify the molecular causes, and to prescribe medicines based on
individualized genetic information. This is our chance to transform medicine from “one-size-fits-all” to a potentially personalized approach.
[The] science of genomic medicine is rocketing forward. But fear of genetic discrimination threatens to slow both the advance of such groundbreaking biomedical research and the integration of the fruits of that research into our nation’s health care. If individuals continue to worry that they will be denied health insurance or refused employment because they have a predisposition to a particular disease, they may forego genetic testing that could help guide medical professionals to lessen their risk, simply because the test identifies them as having such a predisposition. This is about all of us, as there are no perfect specimens at the DNA level; each one of us carries numerous gene variants that increase our risk of developing one disease or another. Therefore, each one of us is at risk for genetic discrimination.
Public concerns about the possible misuse of their genetic information by insurers or employers have been documented. A recent NIH study of families at risk for hereditary nonpolyposis colorectal cancer (HNPCC) (a particular form of colon cancer) revealed that the number one concern expressed by participants regarding genetic testing was about losing health insurance,
should the knowledge of their genetic test result be divulged or fall into the “wrong hands.” Nearly half of individuals with a 50% chance of having the HNPCC mutation cited fear of insurance discrimination as their greatest concern surrounding their participation in this study. Similarly, a recent survey of the personal attitudes of cancer genetics specialists showed that
68% of respondents would not bill their own insurance company for HNPCC or breast and ovarian cancer (BRCA) genetic testing due to fear of genetic discrimination, and 26% of respondents said they would use an alias when being tested.
NHGRI remains deeply concerned about the impact of potential genetic discrimination on both research and clinical practice. Unless Americans are convinced that their genetic information will not be used against them, the era of personalized medicine may never come to pass. The result would be a continuation of the current one-size-fits-all medicine, ignoring the abundant
scientific evidence that the genetic differences among people help explain why some of us benefit from a therapy while others do not, and why some of us suffer severe adverse effects from a medication, while others do not.
These certainly are weighty concerns.
However, let us examine the costs such a law would impose on employers. Currently, laws impose penalties on anyone who hires someone else as a full time employee. The laws are structured so that the decision to hire someone brings a significant risk of losses to the person doing the hiring. Furthermore, mandates concerning provision of medical coverage, and government restrictions that dramatically reduce the availability of medical care mean that a person who hires another can find themselves having to pay for medical care to an employee who is not providing them with any work.
Imagine if laws mandated that you select a particular supermarket as your primary supplier of food. Imagine that these laws imposed a penalty if you switched stores, or forced you to pay the store a set amount of money whether or not you actually bought any food there. Wouldn’t you desperately need any information concerning the ability of a store to reliably provision you with your needs? Wouldn’t you be upset if you knew that the supermarket was purchasing its meat from an unhygienic meatpacker but were forbidden from using that information in selecting which supermarket you were going to be locked into? How could this law be enforced? What sort of evidence would the state gather to “prove” that you based your decision on an illegal set of criteria rather than a legal set?
In reality, employers and insurance companies discriminate illegally all the time, but are usually able evade punishment; they merely cloak their illegal decisions using legally permissible criteria as a cover. On occasion people who are not breaking discrimination laws are still found guilty of committing discrimination. This law will be yet another in the long list of anti-discrimination laws that are problematic to enforce. Unenforceable laws are, in my experience, uniformly bad; they inevitably become tools for politically persecuting those who are out of favor with the powers that be.
While it will not have a dramatic effect, I think that it will also tend make employers slightly less willing to take risks in hiring new people.
But what of Dr Collins’ legitimate and evidence-based concerns? How can we solve this problem?
Dr Collins has identified yet another aspect of the complete mess government intervention has made of the medical industry. People cannot afford to pay for their own medical care out of pocket, primarily because state governments unconscionably reduce the number of practicing doctors to a fraction of what would be provided in a free market, and because of federal tax laws encourage people to purchase socialized medical care from their employers, resulting in a form of the tragedy-of-the-commons where people are encouraged to over-consume medical care. We should be condemning the way the U.S. and state governments have cartelized the medical industry; it is this cartelization that causes people fear that without these nondiscrimination policies that they couldn’t afford to have their broken bones treated. Rather than calling for yet another unenforceable law, it would be better for Doctor Collins to lobby for the dismantling of Medicare and Medicaid, the repeal of tax laws that encourage employer funded health coverage, and the numerical caps placed by state licensure boards on the number of students medical schools graduate and the number of doctors who are allowed to practice medicine within each state.
But what of employment?
Dr Walter Block of Loyola University has written an essay on racial discrimination by employers which is very useful for tackling this subject:
Some people might recoil in horror from turning the clock on race relations back to the pre-1964 period. They would object that if a majority were free to discriminate against a minority, the latter would be greatly disadvantaged. That is, if, for example, whites, were to refuse to buy from, sell to, hire, work for, invest with, for example, blacks, the latter would be unemployed, homeless, and starving.
But this position is economically erroneous. All such scenarios fail to take into account the market’s fail-safe mechanism that helps those subjected to discrimination. Consider employment. If white racists rebuffed black workers, the first effect would indeed be unemployment or lower wages for the latter group. But this situation is only temporary, a mere first stage in the mental experiment we are now considering.(10) For with lower wages or greater unemployment, some whites(11) would be sorely tempted to employ these blacks, because they can earn additional profits exploiting workers who are underpaid or idled.
But is this not unfair to blacks? Why should they have to endure the indignity of lower wages and unemployment (or higher prices for food, clothing shelter, loans, etc.), even if it is only temporary? One answer to this very reasonable challenge is to realize that the enemy is not the market, which is riding to the rescue of the downtrodden group (by first allowing it to suffer, and then, in effect, making this suffering the key to their economic salvation). Another perhaps better answer is that this scenario is a hypothetical construct, articulated in terms of two stages, separate in time, and mainly for heuristic purposes. That is, to clarify the process, we purposefully assume that there would be two stages; in the first, the position of blacks is worsened, to show that in the second they would be rescued. In actual point of fact, there are no such two stages. Any time the wages of blacks (or anyone else) dips below their productivity levels, even by a tiny amount, there are immediate profit incentives to hire them, which starts their wages up on an upward spiral back toward equality.(18)
To return to my original objection, a person who has a genetic predisposition to an expensive illness has, statistically speaking, a lower expectation value for productivity. This is due to the fact that an employer has to take into account the risk that he is going to hire someone who then turns out to be a liability. The better path to improve the employability of people who are known to be predisposed towards genetic disease is to make it easier for employers to hire and fire employees, in part by reducing the laws that penalize discrimination rather than adding to them. Then an employer would not care so much about long-term risks. Rather than having to withhold a portion of their costs to hedge against unwanted dead-weight, they could pay wages that better approximate the marginal productivity of employees, resulting in higher take home wages. Those who are aware of their predisposition towards diseases would be then free to divert these higher wages towards preventative care.
There is yet another point that Dr Collins is bringing up that must be addressed. Even if the U.S. and state governments were to adopt my recommendations, people might still refuse to take the tests because people would probably still be afraid that the tests might be used against them somehow.
Unfortunately, the state can do nothing more than removing the interventions that have caused people to be reluctant to take the tests. I strongly doubt that this law will allay people’s concerns about taking these tests. Until the government stops making medical care unobtainable or prohibitively expensive for most people, people will still be reluctant to be tested, and I fear that Dr Collins’ vision of a medical care tailored to individuals will not be realized.