Are there ever scientific discoveries which should not be pursued?
When does a patient have the right to refuse life-extending treatment?
Is brain surgery for behavioral symptoms ever warranted?
Is the fetus human? Does it have rights?
-Hastings Institute Report
NOT ONLY HAS the whole of our society become greater than the sum of its parts - it has declared war on them.
Ever since we discovered that we could incinerate ourselves, we have been finding new and more terrible powers. We can change behavior with electrodes in the brain; we can change personality with a lobotomy; we can tinker with genes to give a common bacteria the ability to produce cancer. There are the pills that control human emotion, the artificial organs that keep moribund people breathing, the transplants and fetus monitoring and other techniques that support the tyranny of the normal.
We are only beginning to realize what these things can do to our autonomy, to the family - which since our cave-dwelling days has been the molecule of society - and to the individual human person, that charming Byronic anachronism.
And it seems that the only way an individual can fight back is to enlist the prestige of another institution by proclaiming what he calls his rights.
Case 536: Can convicts consent to castration?
Two California men, aged 45, had been committed to a California mental hospital for sex offenses with minors. After two years they were declared still dangerous to society and returned to jail for sentencing.
Given the prospect of life in prison, the men signed requests for castration and waivers releasing their lawyers, the surgeon and the judge from liability.
Such "free will" operations, once common in California, lately have been opposed by the courts since an ACLU suit a few years ago.
Question: Would the surgeon be liable to a mayhem suit in spite of the waivers? Considering the men's range of choices, were they really capable of giving free and informed consent?
Some thinkers, like Jeremy Bentham, believe that "right is a child of law." Some hold that certain rights are God-given. The Oxford English Dictionary devotes 25 columns of small type to the word. In a recent article, philosophy professor Ruth Macklin cited court cases involving claims of: "the right to own a pet," "the right to clean air," "the right to sunshine," Fiji Islanders' "right to a sex break" at lunch, Dr. Renee Richards and her "right to compete" in women's tennis tournaments.
For generations slaveholders believed they had rights over their legally owned slaves, a concept replaced, Macklin noted, by the idea that all persons have the right to be free.
"Some believe," she wrote, "that nonhuman creatures, such as the animals we eat, and marginal persons, such as fetuses, possess rights. Some even hold that it is meaningful and proper to ascribe rights to nonexistent entities, like future generations . . ."
For Dr. Willard Gaylin, psychiatrist and president of the Institute of Society, Ethics and the Life Sciences at Hastings-on-Hudson, N.Y., the whole question comes down to this:
"The incursion into the powers of the family by the state, here as in other places, is often cast in the noble language of rights. What is really at issue in many arguments about 'fetal rights,' 'infant rights' and so on is in reality the relocation of delegated autonomy and power from one institution - the family - to another - the state."
Whose interests should be protected: the mother's, the fetus's, the physician's or the state's?
A new California law provides that the rights of a viable fetus, a child prematurely born alive in the course of an abortion, are the same as any infant's rights to medical attention.
In other words, if doctor and mother, both intent on aborting a fetus, somehow fail in the process, they must reverse their basic purpose and try to maintain the tiny life.
At what point does this reversal happen?
The Institute, as the citizens of Hastings call it, was founded in 1969 by Daniel Callahan, former executive editor of The Commonweal and in 1976 one of Time magazine's 200 Faces for the Future. It was designed specifically to study the area known at bioethics, to ask unanswerable questions that need to be asked in a society that is obsessed with answers.
For openers, there is the ancient notion that death is the enemy of medicine. Now that we have the power to do something about it, doctors are beginning to re-examine this fundamental attitute. Death is a natural event, after all, like birth. Should we automatically consider it anathema?
Case 540: Do couples have the right to bear children at any cost?
A California woman, unable to have a baby for two years, took a fertility drug. She gave birth to sextuplets, all of whom died within eight days. The hospital bill came to more than $50,000.
Her husband's group health insurance paid it all. But premiums for all members of that group will rise next year; the employer's share also will rise, and he will pass on this extra cost.
The wife says she will take the same drug again to try for another child.
Question: Does she have a moral obligation to avoid taking this risk? Does the insurance firm have an obligation to pay for this voluntarily assumed risk?
"When we began," Callahan said, "a lot of these issues seemed like science fiction. Now they are very real. We don't want to rush to legislation. Some issues, like civil rights, have been hashed over for years and are ripe for legislation. But this stuff is really new, and it would be a horrible mistake to legislate."
The recent action by the Cambridge, Mass., City Council in severely curbing Harvard and MIT in their DNA (deoxyribonucleic acid) research might be a case in point. The state legislature of California also is debating a bill to control such scientific experiments. And now the government plans to build a center for genetic experiments at Ft. Detrick, Md.
Recombinant DNA research involves transplanting genetic material from one organism to another. Since most of this work is done with E. coli bacteria - a common inhabitant of the human intestine - the concern is that bacteria bearing, say, a cancer-generating gene might get loose in the water system and thence into countless human bodies.
The problem is to effect controls without overdoing them. The California bill, for instance, would require laboratories to register all employees, report on all research and allow state inspections.
A difficult needle to thread: Under certain quickie abortion laws a high school girl can get an abortion without parental consent, yet she can't even be excused from class unless she has a note from home. And the mass genetic screening programs eargerly sought in the early '70s by blacks who wanted to detect sickle-cell anemia carriers now are being rethought.
"There's so much secrecy about inherited problems," says Dr. Robert C. Baumiller, a Jesuit who consults at Georgetown Hospital on ethical options related to genetics.
"Half the children born with defects should have been predicted before conception. But all too often, parents won't tell their children about some inherited strain."
Sometimes normal brothers and sisters of a defective child live in torment, fearing to marry or have children of their own - and all for nothing.
"If parents bring their children to me, I can explain the risks. And couples about to marry, worried about a retarded child or something. Things they can't ask one another . . ."
"The Institute has no official point of view," Callahan said. "When we started there was a lot of publicity about heart transplants, definitions of death, electrodes in the brain and so on, and a lot of people were interested, but no one was working on them systematically. Our goal was first to get a better level of discussion: Nobody really knew enough to take a real stance on the issues."
Roughly half the Institute's work is to collate thinking on bioethical issues. The other half is educational. Operating in a sprawling house on the old Flo Ziegfeld-Billie Burke estate, the group has at the moment four postdoctoral fellows, 20 student interns spending one to three months on a tutorial basis and ranging from college undergraduates to medical and law students. There are workshops and symposia where top people in a given field are brought together and grilled, as Gaylin put it. There is also the monthly Hastings Center Report, bristling with new concerns, new issues.
"We're not like Nader, who tends to whip up a certain amount of hysteria, because we're nonadvocacy, we're eclectic. We get the leading spokesmen on issues and dramatize the questions so the public can understand. Unless the public is informed, small advocate groups can have incredible influence. Any small cockamamie group can terrify a legislature into action. We just try to bring out the underlying issues, to liberate the big questions from all the verbiage. Our strength is that we cut across many disciplines."
That particular day, 14 top experts in mental retardation had been brought together to talk about problems of the mildly retarded (IQ of 55 to 70) and their limits of competence. For instance, should the state be allowed to have them sterilized or given abortions without their consent, or even with their consent?
A mentally retarded girl in England reached puberty at age 10, and her mother feared that she might be seduced and have an abnormal baby, for which the older woman would then have to care.
The pediatrician recommended sterilization. The mother consented and agreed to consult with the girl. But officials at the girl's special school opposed the plan as unwarranted and brought suit. The case was even debated in the House of Commons, and eventually the courts decided that nonpermanent contraceptive techniques would be sufficient until the girl is old enough to decide her own future.
"What you come down to here," Gaylin said, "is whether we're talking about a medical problem or an educational problem: If mild retardation is seen as a form of illness, a doctor could take far more drastic action."
With a budget of $1 million a year, the Institute counts on about $300,000 from its membership program, workshops, royalties on the many books it generates, and reprints. The rest comes from federal and private grants. It isn't as easy as one might think, for many scientific organizations are wary of putting ethical issues on their agendas.
"Scientists are kind of ambivalent on the ethics issue," said director Callahan. "You're getting into the whole business of scientific freedom."
And here is a fundamental problem of the time. It is one thing for a mathematician to come up with a new theory of matter and devise a formula for it, as E-mc2. It is quite another thing when the theory turns into a bomb that can destroy the race.
"Before the war," he said, "science basically was a private matter. Since then, government money has been increasingly an element, and so the issue is increasingly what the public's say in research ought to be. Scientific research these days includes action. When scientists have to act and experiment on the world, you're talking about something more than free speech."
One recent Institute conference dealt with the Nazi "medical" experiments in concentration camps and "the proper use of the Nazi analogy in ethical debate." Proponents of an unlimited right to scientific inquiry - regardless of result - were taken aback by what the Nazi doctors did, of course. But the debate has more immediate applications: Given the fierce competition for grants and the demand for palpable results by the people who fund them, scientists are under tremendous pressure to produce something more than theoretical proofs.
It is these palpable results, applied to the public, that cause the uproar.
Perhaps the role that money plays in the scientists' dilemma has something to do with the reluctance of congressmen and other politicans to come to grips with the real questions about disease, Callahan indicated. It is hard to talk about cancer. It is painful to consider the ethics of supporting an industrial complex that promotes carcinogens.
"So politicians trivialize it by talking money. It's easier for 'em to talk about the cost of this and that, the cost of cancer, to retreat into figures and charts and abstractions. And this is the way things get through Congress: Here's a good investment; the profit to society; things like that."
The inability of many politicians (with some notable exceptions) to get into any debate on ethics appalls Gaylin. "Look. We're going to have some form of national health insurance one of these days. And it's going to have to have some limits, after all. Right? How are you ever going to get the government to set limits?To make those decisions?"
Case 532: In a military conflict, does the doctor serve the soldier or the state?
An Air Force sergeant broke down after flying 100 missions during seven months' active duty in Vietnam. He developed a terror of flying, said he would give up flight pay, promotion, medals, anything to keep on the ground.
Psychiatrists gave him 36 days of therapy and tranquilizers, gave him the insights into his problem that enabled him to return to full flying duty in less than six weeks.
Question: Is this a misuse of medicine for political goals? Can "normal function" be defined as the ability to engage in combat?
Soon we will be marketing artificial hearts, he said, and they may cost about $10,000 plus $1,000 a year for monitoring. "There may be 500,000 people who will need these hearts. Who'll get them? Will an 85-year-old be able to get $10,000 surgery with public money? How will Congress find a way to say No when it writes these bills? It's an unbelievably hot political issue. And you just won't see Congressmen talking about it."
The Karen Quinlan case, for example, is now supported by Medicaid. So far it has cost $100,000. How would a national health system have handled that situation?
Gaylin singled out Sens. Kennedy and Javits and Rep. Paul Rogers (D-Fla.) as legislators who are working on the issue at a time when many lawmakers won't even discuss it publicly, especially with the elderly.
Some ways the Institute has had impact already:
A proposed model code on the definition of deat has been adopted in eight states and is being considered by 10 others. The new California "death with dignity" bill was decisively influenced by the Institute.
At least six states are following the Institute's guidelines in mass genetic screening: that it be confidential, have backup services and counseling, and that it not be mandatory.
Guidelines on psychosurgery have brought changes in the procedures followed by several states, professional organizations and prisons.
The Presidential Commission on Population Growth has been influenced in important ways, as have other national programs on the ethics of abortion and contraception. The Institute also has been active in workshops, consultation and testimony in court and before Congress on a number of bioethical issues.
These things are tossed off rather casually by the Institute people. They are not very interested in past accomplishments with the future looming as large (and as close) as it does. Though at the beginning Callahan drew some criticism because of his Catholic background, his stands against priestly celibacy and for divorce reform and abortion and his general reputation as an iconoclast have quieted suspicions.
The point is, no one at the Institute has time for such tedious notions. The place vibrates. People talk very fast. They eat lunch wherever they happen to be, balancing plates on knees. They move with quick energy. Protocol is a luxury. One catches their excitement, the feeling they communicate that time is short and there are no second chances. One feels they are facing problems that most of us would otherwise leave to our grandchildren, when it will be too late.
Cases quoted above are from the Hastings Center Report.