LEGISLATING ETHICS

Wouldn't a legislature be the last place you'd look
to make laws sorting right from wrong?
Actually, no

Essay by Donald Sevener
Illustrations by Kyle Quincy Ringquist

You're a state legislator, elected from a mildly conservative, socially mainstream downstate district, and you face an ethical dilemma. Before you is a bill to outlaw doctor-assisted suicide. The arguments to ban assisted suicide are powerful: Doctors are supposed to heal, not kill; modern medicine can relieve pain and suffering; this is a moral slippery slope where abuses are almost inevitable; assisted suicide would be a threat to the poor and uneducated. On the other hand, you cannot erase from your mind the agony, the despair, the suffering your sister-in-law endured as the tumor wrapped around her sciatic nerve producing savage, merciless pain and, in her lucid moments, anguished pleas for death. You're a member of Congress from a Midwestern state with a strong strain of traditional values, a wariness of government, a faith that, on balance, most problems get worked out to everyone's satisfaction if we just leave them to the marketplace, and you face an ethical dilemma.

Before you is a bill that would prohibit human cloning. The arguments to ban cloning are powerful: Cloning could lead to "harvesting" newborns for their "body parts"; it opens the door labeled "genetic engineering" with all sorts of spooky or immoral possibilities on the other side; it would substitute the scientific for the spiritual in the most wondrous, even miraculous, aspect of human endeavor, the creation of life. On the other hand, you cannot erase from your mind the testimony of those who promise cloning will revolutionize medical treatment or enable parents to screen out disabilities that maim or kill children in childhood.

If you are a maker of laws, you sit at the vortex of a moral tempest, the roiling conflict between science and ethics. As science takes us unrelentingly forward with stunning discoveries, particularly in biomedicine, legislators increasingly are being called upon to referee the conflict over matters of life and death, a conflict between what science makes possible and what ethics finds acceptable. Lawmakers confront a tangled array of hard questions without easy answers — assisted suicide, DNA testing, organ donation, embryo adoption, genetic engineering, human cloning.

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For a variety of reasons — political currents, market forces, public sensibilities, the nature of lawmaking, the complexity of issues — a lawmaker sits at what would seem the worst possible vantage point for making policies about questions of life and death, about science and ethics. Scientists tend to think legislators do too much — rushing to judgment, say, to ban human cloning when scientific (or marketplace) reality dictates a more measured course. Ethicists tend to think they do too little — giving in to special interests, say, on access to health care, or to blind faith in marketplace regulation of assisted reproduction.

Indeed, on many grounds, legislatures appear poor venues to arbitrate the moral choices that science and ethics put before us. They typically are places where special interests hold sway; they seldom are places of thoughtful, well-reasoned deliberation; they are even more rarely places of exemplary ethical behavior (a Congress that seems genetically incapable of enacting campaign finance reform ought to have little to fear from eugenics). Even so, despite their blemishes — or perhaps because of them — the halls of Congress and of statehouses are the best venues we have for resolving thorny issues of life and death.

Politicians, at least in the late 20th century, are cautious creatures, more given to temperate movement than bold action; we call them leaders, but their impulse is to follow.

Legislators have a thousand issues clogging their minds — school funding, criminal justice, health care, roads and bridges, and jobs and welfare, and who knows what all from every constituent and his brother-in-law. But mostly what they have on their minds is re-election, which means legislators don't like tough questions, uncertainty or hard choices that are difficult to measure clearly by opinion pollsters. They are particularly wary of matters laden with ethical dilemmas because ethical decisions present the toughest choices, and hence the biggest risks, of all.

Arthur Caplan, a noted bioethicist and author of Am I My Brother's Keeper? The Ethical Frontiers of Biomedicine, notes: "When faced with uncertainty, doubt, controversy, what legislatures tend to do is nothing. If there is no clear- cut consensus, nothing happens. When they're not sure — and a lot of these issues are seen as high risk that could get you in trouble in the next campaign — then sometimes the best strategy is basically to sit on your hands and stay out of it."

Without a common religious grounding that points toward a particular course of action, lawmakers often "are not sure which side of the issue to come down on, and they are afraid to take a gamble that they'll be wrong."

This article is the second of three examining the intersection of science, ethics and public policy. In April, we examined the role of medical ethicists in shaping public policy pertaining to life and death. In June, we will look at the role of money in research. Springfield artist Kyle Quincy Ringquist will illustrate all three pieces. The series is sponsored in part by a grant from the Illinois Humanities Council.

Caplan says it is instructive that "the only assisted suicide law came from a referendum," a popular vote in Oregon. "In defining death and withdrawal of treatment, a [legislative] consensus developed only after a public consensus had already been achieved. There are 800 bills on managed care [in legislative hoppers], but that doesn't mean any of them will pass. In bioethics, it's rare that a state legislature is going to lead. Almost always, it follows. There is enough uncertainty and confusion that people are not going to go out on a limb."

Nor does the nature of lawmaking lend itself to considered debate over the dilemmas presented by science and ethics. Legislators are politicians, not planners. Their longest-range horizon is November of even-numbered years. Planners look ahead, sort out trends and projections, anticipate problems and then set policies designed to prevent them. Politicians, in contrast, solve problems; they are reactive, not prescriptive, in their approach to issues and concerns. It's much easier to get a job for your wife's Uncle Charley than to set policies — education policy, tax policy, workforce training policy — for the information economy 20 years hence.

It is only when a problem becomes so obvious or unavoidable that it demands intervention by government that it is then ready for legislators to tackle. For example, planners and cost-benefit analysts could easily anticipate that the movement toward managed care would lead inevitably to shrinking hospital stays for treatment of disease or other conditions. But it took an actual "problem" — one with a catchy title — before lawmakers in Illinois voted to ban "drive-through" deliveries.

Another issue, this a dilemma posed by science and ethics: genetic testing for propensity to a particular disease. More than half the states, including Illinois, have enacted legislation prohibiting or

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restricting the release of information from genetic testing for fear its disclosure could lead to discrimination against a person for employment or health insurance. The chief sponsor of the measure in Illinois, Rep. Donald Moffitt, a Republican from Gilson in the rural area west of Peoria, brought the problem to the legislature after a constituent brought it to him. The constituent, Carolyn Dean, had a family history of ovarian cancer, and doctors told her it would be advantageous for her daughters and granddaughter to be tested to determine whether they carried the gene that predisposed them to the disease, knowledge that would enable them to take precautions or at least be alert for early detection of the disease. But the problem was that such information could not be shielded from insurance companies or potential employers. In 1996, Moffitt introduced legislation to keep such information confidential. It passed a year later.

Moffitt remembers the legislation being difficult to pass. "It was a new concept. We as a society are not used to dealing with genetics, or knowing all the ramifications of genetic testing. There is a learning curve that has to be overcome, and there was fear of the unknown."

Moffitt's point is valid: Lawmakers often need time for a new idea to grow on them, to learn a new vocabulary and to sort out what's right from what's politically useful.

The gap separating right from expedient is a void that special interests are only too happy to exploit. Moffitt notes that the obvious opponent of his legislation was the insurance industry, a well-heeled and politically

What we know about science often comes from Hollywood. That lack of understanding is a significant harrier to informed and productive action. It may be the biggest hurdle to effective lawmaking on issues of life and death.

assertive force that naturally resisted any attempt to restrict its access to information that could prove valuable to its balance sheet. Anyone who has ever changed jobs knows the hassle — and the frustration — of being told the new employer's health insurance carrier won't cover a "pre-existing medical condition." What if DNA testing revealed a genetic propensity for breast cancer or some other debilitating, costly disease? Isn't that the ultimate example of pre-existing condition? Wouldn't it be the ultimate escape clause for an insurance company to evade liability for the cost of treating diseases that, genetically speaking, have "existed" since before birth? No, says Moffitt, who won passage of the DNA testing bill by making a subtle but important distinction. Carrying the breast cancer gene, he says, doesn't mean someone has cancer, only that a person is predisposed to develop it. "It's a distinction between pre-existing and predisposition," he says. "That was a big part of what the debate was over, and why it took so long to pass the bill." Actually, a year is the blink of an eye in legislative politics. But the more salient point is that he did it. He presented a real and pressing problem, he taught his colleagues a new word, he stood up to a powerful lobby, and he did the right thing.

Donald Moffitt has seen the future, and it has left him both awed and anxious.

"The next step" beyond genetic testing for disease, he says, "is the ability to alter that gene or cause it not to be passed on to the next generation." He is talking about the ability of Carolyn Dean's granddaughter to prevent the ovarian cancer gene from infecting another generation.

He is talking about genetic engineering.

"That is where you really get into an ethical debate," he says. "If you use it to fight disease, then that is something to take a look at. But I want to make clear: I'm not talking about developing a superior race."

Here is a distinction without a difference; one that illustrates the difficulty of legislating ethics.

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If it is proper for parents to select a genetic makeup for their child that screens out the breast cancer gene, why is it improper for those parents to screen in genes that can make their child a great shortstop or an acclaimed concert pianist?

"I see preventing disease as a whole different realm than using genetic screening to grow a superior athlete," Moffitt says. "I'm opposed to human cloning."

And most people agree with him. Polls show that 90 percent of Americans oppose human cloning (a majority would not eat meat from a cloned animal).

Where, exactly, would one draw the line? Wouldn't the meat of a cloned calf be superior, say, to cattle with mad cow disease? And what is the market these days for short- stops and concert pianists?

Leo M. Silver, a professor of molecular biology at Princeton University and author of Remaking Eden: Cloning and Beyond in a Brave New World, argues that buying the best genes is not much different than purchasing other advantages in a country that already tends to leave the reproductive marketplace free of fetters. Silver writes: "If it is within the rights of parents to spend $100,000 for an exclusive private school education, why is it not also within their rights to spend the same amount of money to make sure that a child inherits a particular set of their genes? Environment and genes stand side by side. Both contribute to a child's chances for achievement and success in life, although neither guarantees it. If we allow money to buy an advantage in one, the claim for stopping the other is hard to make, especially in a society that gives women the right to abort for any reason at all." Some countries and some states

have ignored "these logical arguments," says Silver, but their laws prohibiting embryo selection (a close relative of cloning) are probably futile. Parents who carry the genes for fatal hereditary disorders will "surely feel that it is their 'God-given' right to have access to a technology that allowed earlier couples to have nonafflicted children, and just as surely, there will always be a clinic in some open state or country that will accommodate their wishes. "And," he concludes, "if the technology is available for this one purpose, it will also be available for others." Arthur Caplan, who heads the Center for Bioethics at the University of Pennsylvania, notes: "The market force is very strong. Allow the market to solve problems — that is a very American response. There is also a cultural factor, a belief that the individual citizen can make good choices. Give him information and don't dictate action — informed consent is our vehicle for resolving many issues. That is a very strong American orientation." It is an orientation he believes policy-makers like Moffitt are right to resist. Caplan writes in his

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recent book, Am I My Brother's Keeper?: "An unregulated market will not prove adequate for keeping artificial reproduction on a moral course in the future." If society believes that "designer babies" or other offspring of biomedical technology offend human dignity, he says, then such activities "can be brought to a grinding halt."

Silver's answer is that the use of "reprogenetic technologies" — from in vitro fertilization to human cloning — "is inevitable. It will not be controlled by governments or societies or even the scientists who create it."

Caplan disagrees. Impose stiff penalties for human cloning, bar recognition of research and government and foundation funding of it, ban commercial or financial gain from it, and, he writes, "For all practical purposes human loning will grind to a halt."

What these dueling views demonstrate is the healthy tension between marketplace forces and regulatory need. Lawmakers cannot repeal the laws of a market economy (if a parent wants to buy a genetic code for a .300 hitter, someone no doubt will supply it). But neither are legislators powerless to shape market forces in ways that protect economic, social and ethical rights. Caplan: "The fact is, advances in biomedicine have been modulated by moral concerns. There are a number of technologies which have been shaped and controlled by law, regulation and societal oversight."

Though scientists like Silver and ethicists like Caplan disagree about the wisdom and extent of government regulation of genetics and other reproductive technology, both agree that our lack of understanding of science is a significant barrier to informed action.

It may be the biggest hurdle to effective lawmaking on issues of life and death.

We need to look no further than our dismal achievement levels on international tests of scientific knowledge to see how little we as a culture understand about science. But such measures tell only part of the story. What we do know often comes from Hollywood.

Silver asks: "Why do four out of five Americans think that human cloning is 'against God's will' or 'morally wrong'? Why are people so frightened of this technology?" Because people don't understand what it is, scientifically speaking. In popular usage, Silver notes, "clone refers to something that is a duplicate, or cheaper imitation, of a brand-name person, place or thing. The British politician Tony Blair has been called a clone of Bill Clinton. ... It is this popular meaning of the word that causes many people to believe that human cloning would copy not just a person's body, but a person's consciousness as well. This concept of cloning was at the center of the movie Multiplicity, which was released just months before the Dolly announcement." Such an image, he surmises, is what provoked science critic Jeremy Rifkin to say, "It's a horrendous crime to make a Xerox (copy) of someone." "But this popular image bears absolutely no resemblance to actual cloning technology," Silver says, "in either process or outcome. Scientists cannot make full-grown adult copies of any animal, let alone humans." A cloned child, he says, "will simply be a later-born identical twin." Caplan, too, blames popular culture for creating false understanding of complex scientific principles, but also sees a darker

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So, what is the alternative?

In Oregon, the only state to legalize doctor-assisted suicide, the alternative was public referendum.

Think of what might have happened had Carolyn Dean been forced to take her concern about DNA testing to the people.

Would teaching such a nuance — predisposition versus pre-existing — that took legislators a year to learn have been possible in the heat of a political campaign? Would a prosperous industry that felt threatened by regulation open its political action vault to finance TV sound bites warning about rising insurance premiums or diminishing access to health insurance if voters step into the business of passing laws? Would an issue that lost one year be resurrected the next and successfully enacted? The answers are no, yes and no.

Statewide referendum is not constitutionally permitted in Illinois, nor practical on a national scale.

But the example serves as a cautionary reminder that special interests often have the clout to tip the balance. Rep. Moffitt faced down the insurance lobby, an industry easy to portray as greedy and undeserving, and he won. Had he picked an issue that riled the medical society, or trial lawyers, or organized business or labor, the outcome might have been different.

The legislature often is a poor place for lawmaking. But Carolyn Dean brought science and ethics together in about the only place we have to tame what's possible with what's right.

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