Grocery Store Genetics: Gene Cards, Discrimination, and Environmental Values
The market is filled with people buying groceries for the coming week. After reaching for a frozen dinner, a man stops to retrieve the card buzzing in his pocket. The display on this card reports that the dinner he has chosen contains a preservative which poses a small but not insignificant risk for his genotype.
A combination of several genes results in his being at ten thousand
times the risk of the general population for developing cancer from this
preservative if it appears regularly in his diet. (The general population
is at a one in ten million lifetime risk meaning a one in a thousand lifetime
risk for our intrepid consumer.) The display lists alternatives that conform
to his tastes and sends a request to the market's computers to carry some
of the alternatives not in stock. The display next lists the latest
on therapeutic solutions to the sensitivity and other common items that
present significant risk because of the sensitivity. Of course the card
also serves as a personal organizer, a credit card, and the key to his
Perhaps this is the year 2020, although similar technologies may begin to arrive sooner or later. Cards or some other genetic information device will likely emerge first as a way to prevent adverse effects of medication. Many pharmaceuticals have adverse effects on some users. Sometimes these effects can be severe and those affected cannot be identified in advance. In such cases, even if a drug is enormously beneficial for the great majority of users it may not be brought to market. Genetic information may identify those who cannot take a particular drug. Technology like the card could open the door to bringing much more effective drugs to market with fewer worries about adverse drug reactions -- users would be alerted to any conflicts through their card or pharmacist.
Suppose that in the society in which our grocery shopper lives, genetic privacy is given the utmost protection. No one may have access to the information on the card without the express consent of the cardholder. Genetic information may only be used for the purposes for which it was disclosed and may not be transferred.
This may seem an ideal scenario. Citizens are empowered by having the information they need when they need it to manage their own risk. No one else can obtain their genetic information to use against them. Some may argue that there will be no need for government to involve itself in regulating risk at all -- other than to see that it is accurately reported to individuals. It is not at all clear, however, that this would actually lead to a future that any of us would choose.
The Consequences of Reduced Uncertainty
The use of genetic technologies to reduce the uncertainty surrounding our health status and disease risks will be a major blessing to us all. Those with family histories of inherited disease, for example, will benefit greatly from knowing whether their risk is no greater than average or whether they are at high risk -- perhaps indicating regular screening or some type of aggressive prevention.
However, uncertainty has become, even as we strive to eliminate it, integral to our society. We depend on uncertainty for moral comfort, for social inclusion, and for protection of the environment. The rational use of genetic information will erode some of the layers of uncertainty that have surrounded us in the past, exposing vexing moral problems.
Human Health Risks
That we know how many will likely die of cancer in five years but not,
with anything approaching certainty, exactly who will die makes it natural
to pool our risk, all of us bearing the burden to pay for the care of
the sick. Genetic information and other medical technologies will lead
to less (but not zero) uncertainty. The rational economic response would
be to reallocate the financial burden based on known risk. The genetically
predisposed may be asked to carry more of the burden of health care since
they carry more of the risk, just as smokers or other risk groups carry
more burden today. Taken to the extreme, perfect information would destroy
the underpinnings of insurance. Uncertainty has forced us to share; will
we make the conscious choice to continue sharing societal burdens even
as more of the uncertainty is cleared away?
Uncertainty has been an engine driving alternatively more and less stringent environmental regulations. The "Precautionary Principle" is a moral principle asserting that regulations must allow for uncertainty and provide adequate margins of safety to protect the public and the environment. Others have argued that uncertainties should be resolved in favor of "employment" and "productivity." While it is becoming increasingly clear that a healthy environment and a healthy economy are not mutually exclusive but in fact mutually dependent, this "Anti-Precautionary Principle" has prevailed in a number of instances, including the OSHA Act as interpreted by the Supreme Court in 1980 in the Benzene decision (448 U.S. 607), which requires a threshold finding by OSHA that a certain level of chemical exposure is "unsafe" before the agency can ban exposure at that level (although the opinion also embraces elements of the Precautionary Principle in allowing a finding of "unsafe" to rest on "conservative assumptions" based on a "reputable body of scientific thought").
Reduced uncertainty may sometimes have the effect of strengthening standards and perhaps sometimes leave room for standards to be loosened. It will be the known facts, and the values that color our view of those facts, that then shape the debate.
Technologies that enable us to know which people are most at risk from environmental contamination may prove to be a double-edged sword. On the one hand, new, powerful constituencies for environmental protection will be created. It is far more compelling to see a human being testify that a particular standard has placed her or her family in jeopardy than it is to see a regulator discuss risk distribution in the abstract. When confronted with those who will actually be victims, the public will likely demand greater protections.
On the other hand, knowing who is most at risk may create opportunities to reduce those risks without curtailing the environmental contamination in the first place. Behavioral changes or medical interventions could reduce the risk of disease for the small percentage of the population for whom the risks are significant. This is not our practice today. Asthmatics are not forced to move out of Houston or undergo any particular medical treatment. Might this change?
Intruding into some of the most basic life choices of its citizens has never been and will hopefully never be the role of our government. Yet life choices are influenced greatly by the web of private actors upon which all of us depend, including insurance providers, doctors, employers, and family. We will likely never tolerate a government which instead of insisting on cleaner air forces citizens to move. But is there any real difference between that scenario and one in which a susceptible person is unable to obtain health care or employment so long as they reside near a pollution source? We must examine our notions of discrimination by private actors if we are to understand the challenges presented by new technologies like the genetic smart card.
What Is Inequity?
Invidious discrimination is by definition discrimination that we find contemptible.
There are many ways of further defining this, all with different practical
results. How we feel about the genetic smart card and individualized risk
management may well turn on which definition we choose.
One view is that private individuals should have the freedom to discriminate no matter how irrational or contemptible such actions might be. Only government should be prohibited from disadvantaging a historically subordinated group. This view would tolerate private discrimination, such as refusal to serve an ethnic group in a restaurant, and is contrary to the 1964 Civil Rights Act. It is clear that the genetic smart card does not offend this principle, which is really just a standard of government conduct that does not reach private decisionmaking.
Another view, more consonant with the spirit of the 1964 Civil Rights Act, is that private individuals in certain contexts (as employers and as owners of public accommodations, for example) must treat members of historically disadvantaged groups rationally. Race alone is not a legal reason to turn someone away from a hotel, but there is no requirement that a lower profit be had in order to accommodate someone. (Although arguments that employing minorities or accommodating them will lead to a loss in customers and therefore lower profits have never been deemed acceptable.)
Unlike the first principle, this principle does have a social vision
-- a society in which people are treated based on economic merit -- based
on their ability to make or yield a profit rather than on irrelevant considerations
such as race. The principle does not require social inclusion, however.
It is not adequate if providing, for example, access to employment and
transportation for the disabled as the desired social goal.
The principle is also fuzzy at the edges. If one had evidence that a certain ethnic group is more prone to automobile accidents, would we tolerate an insurance company's effort to charge higher premiums to members of that ethnic group? Doubtful, but we already tolerate such discrimination based on age -- with young, male drivers paying more for their statistically higher risk.
It is far from clear how such a principle might be used to draft laws to protect against genetic discrimination. At least in the immediate future, a group of people of a common genotype will probably not be considered a historically subordinated group. Genetic information does not divide us along legally "suspicious" grounds. Furthermore, many of the feared scenarios involving genetic discrimination involve economically rational choices -- higher insurance premiums charged to susceptible genotypes, occupational discrimination based on genetic information, etc. Indeed, as described above, it is the series of rational consequences that the widespread use of genetic information might have that seems to be the most troublesome.
The Americans with Disabilities Act is an example of a law based on another standard, one meant to actively promote social inclusion rather than simply to deter exclusion and separation. Generally speaking, the standard requires that all individuals (with many limitations and exceptions in the ADA itself) be allowed to participate as fully as possible in society and its commerce, without incurring extra burden due to impairment. This means, in the case of the ADA, that the owner of a restaurant must make it accessible to people in wheelchairs, to the blind with guide dogs, and to people with other handicaps. The manager of a firm cannot refuse to hire a blind person who is the most qualified of the applicants based on a consideration of the additional cost required to hire a reader.
Is active social inclusion a shared goal with respect to all classes of people? How much exclusion are we willing to tolerate in a democracy? These questions are being wrestled with now.
The Consequences of Reduced Uncertainty
Uses of Genetic Information
Some examples of genetic discrimination have already been discussed and debated by lawmakers. Should an insurance company be able to charge higher premiums to those genetically predisposed to disease? Should they even have access to a policyholder's genetic information? While some have raised concerns about the reliability of the information, the underlying concern is rational discrimination. Do we want these private actors to have access to better information?
In the workplace, there could be many opportunities to use genetic information to save costs. An employer could refuse to hire those who are at an increased risk of disease in order to keep insurance costs low. An employer could refuse to allow people to engage in certain jobs that present greater risks due to an employee's genetic predispositions. Some may object strongly to the first example while feeling that the second is a proper use of genetic information. Others object to both. Still others might find both uses acceptable. There is no consensus.
Each of these circumstances could be avoided by genetic privacy and antidiscrimination legislation. However, some argue that the uses of genetic information should be considered in terms of the overall health care debate. If a drug turns out to be virtually ineffective for a person's genotype, should they have the right to insist that their insurance company -- meaning all of the other policyholders -- pay for a drug that will almost surely do no good? Or should they be forced to disclose the information that will prove that an expensive drug will be effective for them -- piercing the veil of genetic privacy? The framing of these questions is biased by present assumptions about the way in which insurance companies will interject themselves between the doctor and the patient. The continuing validity of these assumptions may be tested by a more wide-ranging debate over health care delivery.
Returning to our grocery shopper, armed with a genetic card in a world in which one's genetic information is one's own and is absolutely private, are all of our concerns about equity addressed? There is no opportunity for an employer to deny work, for an insurer to deny coverage, or for any entity to dictate a lifestyle based on genetic information. Might there still arise a genetic caste system -- a stratification of society into the genetically able and the genetically disabled?
When the shopper places the offending product back on the shelf after being warned of the potentially harmful preservative, it is a rational response to (hopefully) accurate information. It is still, however, a choice not to participate in the bounty of society -- but thankfully only with respect to that single, probably unimportant product.
Just how widely will such susceptibilities be distributed? Will some bear a disproportionate burden? How one is affected by a genetic susceptibility is a function of two things. First, it obviously depends on one's genetic code. But second, it depends on the distribution in the environment of the agents to which one is susceptible.
For example, assume that a person has a very dangerous susceptibility to a certain chemical that does not appear naturally in the environment. Assume that this chemical is enormously useful in the manufacture of a wide array of products and has been universally adopted across many product lines. Avoiding the products that will bring exposure to the chemical will result in a marked impairment of the individual's ability to participate in society. Another person may have a susceptibility to a different sort of chemical that is very rare both in nature and in the marketplace. The first person bears the greater burden but only because of the way in which society is operating.
The real question in terms of equity then becomes how widely and evenly social impairments due to genetic susceptibility are distributed, rather than a question about the susceptibilities themselves. We do not currently have answers even about the susceptibilities. A lot of research is focused on determining genetic bases of susceptibility to widely used agents. The research that has been done has shown that some genes will present only a modest increase in risk of developing disease -- others a far more marked one. Some genetic variants are shared by large portions of the population -- others by very small portions.
In the grocery store scenario, the genetic card informed the shopper of alternatives not containing the preservative. Will such alternatives exist? This will almost certainly depend on the size of the market for the alternative. If there are very few in need of an alternative, there will be less money to invest in developing the alternative and as a result probably a lower quality product (or a much more expensive product if the group in need can afford to pay). If, on the other hand, the susceptibility is shared by a large group, say thirty or even forty percent of the public in some cases, a very high-quality product will probably be developed to meet that large demand.
It may not seem so worrisome when talking about a frozen dinner, but the connection between product quality and size of the market may be very troubling when applied to products like cancer drugs. It is a far more difficult situation when a patient does not have access to an effective cancer drug because the ones on the market already meet the needs of the vast majority of patients. The unfortunate reality though is that many drugs are already not effective for some people. The new technology will at least be able to yield this information in advance. The real moral difficulty is that we will soon know exactly who will be left out in the cold.
A concrete example that does not depend on hypothetical technologies is furnished by people who suffer from allergies to nuts. Such allergies are not common but are by no means rare. They also can be quite severe, even fatal at relatively low exposure levels. The use of nuts in foods is widespread and apparently unencumbered by concerns that those with allergies are being socially disadvantaged. Indeed we have generally placed the burden on those with allergies to avoid the exposure in the first instance. Is this because the universe of alternative foods is sufficiently large and the burden relatively minor? (Compare this to asking an asthmatic to move.)
The arguments for forcing alternatives on the rest of society to accommodate those with allergies appear to be stronger in the context of air travel. The packaged peanuts served on many flights were an absolute impediment to air travel for those with the worst peanut allergies. As a result many airlines have stopped serving peanuts -- and apparently not in order to compete for the small market of those with allergies. There may indeed be a large difference between a burden that slightly thins the market in food items and a burden which essentially forecloses the only efficient means of international and long-distance domestic travel.
Will people choose where to live based on genetic susceptibility? Will an industrial operation near a person's hometown prove too risky a neighbor due to the person's genetic susceptibility to certain chemical by-products? Will that be the same person who can't use the most common consumer products? Or will genetically susceptible people disregard their higher risks in favor of the short-term convenience of living a "normal life," thus putting themselves in jeopardy of longer-term health risks? Or will it be the case that while person A can't live in Houston, person B can't live in Reno -- and person C can't eat foods treated with a certain pesticide. We may all have our weaknesses.
It appears that if we are driven by a vision of social inclusion, by the accommodation principle of antidiscrimination, then knowing how the burdens of susceptibility are distributed and how heavily those burdens weigh will be crucial. Will there be categories of people whose freedom to participate in society will be significantly impaired when they learn of the risks they face due to their genetics? Only science can tell us. Only progressive policies may prevent it.
A Challenge to Define Our Environmental Values
It is not only individual liberty that may be threatened by a shift in responsibility for reducing risk from industry to individuals. By focusing so heavily on reducing risks to human health at the cheapest cost, we may be led to ignore other environmental values. If the technology arrived that would allow us to be healthy in a polluted world, would we really wish to put it to the test?
For years a convenient synergy has existed between efforts to protect human health on the one hand and efforts to protect a whole host of environmental values on the other. The Clean Water Act has helped to make many of our nation's waterways safer for people to use, while at the same time helping plant and animal life whose existence is tied to water quality. Regulations covering pesticides, air emissions, and disposal of toxic waste, for example, have been aimed at protecting the public but have at the same time served to protect plants, animals, and scenic views. By protecting ourselves we have been better stewards of our natural resources.
This synergy is not a perfect one. Indeed, regulations sometimes serve only to move pollution from one medium to another -- perhaps to the detriment of some species. What has appeared to be good for humans generally may sometimes be a mixed bag for our planet's other inhabitants. But it cannot be denied that our environmental laws have greatly reduced the impacts of our industry on the environment from what they would have been had we failed to act.
Without a shift in the values underlying many of our environmental laws, our increasing medical expertise and ability to gauge individual risk will make human health concerns a far weaker justification for strengthening environmental standards. If doubling the pollution coming from a certain factory does not cause any health problems, then human health cannot be a justification for preventing that pollution. The underlying value choices will be laid bare -- how much is a clean and thriving environment worth to us? The chapter on Nature's Services in this report describes efforts to arrive at some answers.
Next section: International Toxicity