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For urther volumes:

http://www.springer.com/series/10184

SpringerBries in Ethics

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Lisa Newton

1 3

The American Experiencein Bioethics

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Lisa NewtonShelburne, VTUSA

The Author(s) 2013This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or parto the material is concerned, specifcally the rights o translation, reprinting, reuse o illustrations,recitation, broadcasting, reproduction on microflms or in any other physical way, and transmission orinormation storage and retrieval, electronic adaptation, computer sotware, or by similar or dissimilar

methodology now known or hereater developed. Exempted rom this legal reservation are brie excerptsin connection with reviews or scholarly analysis or material supplied specifcally or the purpose obeing entered and executed on a computer system, or exclusive use by the purchaser o the work.Duplication o this publication or parts thereo is permitted only under the provisions o the CopyrightLaw o the Publishers location, in its current version, and permission or use must always be obtainedrom Springer. Permissions or use may be obtained through Rights Link at the Copyright ClearanceCenter. Violations are liable to prosecution under the respective Copyright Law.The use o general descriptive names, registered names, trademarks, service marks, etc. in this publicationdoes not imply, even in the absence o a specifc statement, that such names are exempt rom the relevantprotective laws and regulations and thereore ree or general use.While the advice and inormation in this book are believed to be true and accurate at the date opublication, neither the authors nor the editors nor the publisher can accept any legal responsibility or

any errors or omissions that may be made. The publisher makes no warranty, express or implied, withrespect to the material contained herein.

Printed on acid-ree paper

Springer is part o Springer Science+Business Media (www.springer.com)

ISSN 2211-8101 ISSN 2211-811X (electronic)ISBN 978-3-319-00362-7 ISBN 978-3-319-00363-4 (eBook)DOI 10.1007/978-3-319-00363-4Springer Cham Heidelberg New York Dordrecht London

Library o Congress Control Number: 2013936002

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v

1 Birth, Life, Death. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

1.1 Issues Surrounding the Basic Material o Lie . . . . . . . . . . . . . . . . . . 11.1.1 Stem Cell Research: Some Defnitions . . . . . . . . . . . . . . . . . 2

1.2 Cloning: Ought We to Attempt to Clone Humans? . . . . . . . . . . . . . . 3

1.2.1 Experiments with Stem Cell Therapy. . . . . . . . . . . . . . . . . . . 6

1.3 Assisted Reproduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

1.3.1 Technology o Assisted Reproduction . . . . . . . . . . . . . . . . . . 7

1.4 The Abortion Controversy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

1.5 Dilemmas o Impaired Inants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

1.5.1 The History . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

1.6 Problems at the End o Lie . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 181.7 Voluntary Death and Assisted Suicide . . . . . . . . . . . . . . . . . . . . . . . . 31

1.8 Physician Assisted Suicide . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32

2 The Cutting Edge . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37

2.1 Organ Transplantation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37

2.2 Problems in Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44

2.3 Philosophical Issues o Animal Research . . . . . . . . . . . . . . . . . . . . . . 45

2.4 Research with Human Subjects . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46

3 Allocation of Health Care Resources. . . . . . . . . . . . . . . . . . . . . . . . . . . . 55

3.1 The History to this Point . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 56

3.2 Health Care in the Private Sector . . . . . . . . . . . . . . . . . . . . . . . . . . . . 61

3.3 A Better Way: Return to the Local . . . . . . . . . . . . . . . . . . . . . . . . . . . 70

Contents

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vii

Introduction

This piece is an introduction to the ethical problems surrounding the provision o

health care: how the problems present themselves, something o the history o ourattempts to deal with them, whatever consensus may have been achievedor not,

depending on the problem. Given the breadth o the topic, no pretense has been

made to go into any part o it in depth; given the mission o this series or brevity,

all ootnotes/endnotes have been omitted. Where acts and fgures would be rel-

evant (or instance, in the number o U.S. citizens not covered by healthcare insur-

ance, or the cost o that insurance), those acts and fgures have generally been

omitted, since they go out-o-date very quickly (and are readily available electron-

ically). This account is meant to be no more than a Brie, or briefngan intro-

duction to the controversies or those who need to know something about them insmall compass.

The frst two chapters track the development o Bioethics in America in an

order dictated by the importance o the issues in traditional discussions o the

subject. First, birth and death, abortion and euthanasia, and the issues that spread

out rom them: Do couples anxious or a pregnancy have a right to technological

assistance? I we want a certain type or appearance o the child, should we med-

dle with the genes to try to get the perect baby? Can we ensure genetic continu-

ity by cloning a parent? Once a pregnancy is established, do we have a right to

terminate it? What i the child is born deormed or missing organs necessary orlie? Are there lives that are simply not worth living? What do we mean by death

with dignity? What are we permitted to do to protect the dignity o the dying?

Second, when biomedical practice steps into the realm o the experimentusing

human beings as its guinea pigshow can we make sure that the subjects rights

as human beings are preserved? Is there experimentation with dignity? Are cut-

ting edge practicesorgan transplantation to begin with, now transplantation o

entire limbslikely to do more harm than good? Who can be the judge o these

practices? Recall, it was outrage over research with human subjects that led to the

ormation o the National Commission or the Protection o Human Subjects oBiomedical and Behavioral research, and the best public discussion o the new

challenges to Bioethics that our country has enjoyed.

Ater this necessarily brie tour through the emotionally searing cases that

shaped what consensus there is on Bioethics in America, we take on the great

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Introductionviii

conundrum o our time: the provision o excellent health care or all Americans

at an aordable cost. This proposal is new; it has been aired in a ew specialized

journal entries and a ew academic conerences, but I have not seen its like taken

seriously in the current political debate. Its adoption would require the upend-

ing o many o our assumptions about healthcare practicebut not all o them.Parts o the proposed system are in place now, and others would not be difcult

to restore. But it will entail a vast change in the patterns and amounts o com-

pensation or the provision o health care, and that change will create enough

political problems to keep us occupied or some decades. We had best get started

immediately.

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1

From the beginning o the passionate discussions o the ethical implications o the

human condition, especially the condition o the human body and our ultimatelyutile eorts to avoid disease and stave o death, we have continually returned to

the basic questions o lie and death: i lie is o immeasurable value, can there

possibly be conditions where it would be right to cut it short, to end it? No course

in medical ethics1 can avoid the questions o abortion and euthanasia, the termina-

tion o lie beore it really begins or hastening its end as it approaches. Can these

be morally justied? On examination, the questions expand to include all manipu-

lation o the processes o human lie, rom the most basic cells rom which we

emerge, through their growth to birth, the technologies we have developed to assist

reproduction, through the perils o human lie to the approach o death. What righthave we to shape these natural processes or our comort and convenience? These

most basic questions shape the beginnings o the discipline.

1.1 Issues Surrounding the Basic Material o Lie

Ought we to isolate and manipulate the stu o lie itselincluding research with

embryonic stem cells, experiments with cloning human beings, creating chimerasto discover new possibilities or tissue transplantation, trying genetic modica-

tion o human embryos to eliminate undesirable genetic traits (or enhance desir-

able ones)even to achieve worthy medical, personal, or social goals? In all these

cases, the greatest happiness o the people at large will be served by continuing

the research. But is it compatible with the dignity o the human?

1 Since medical ethics seems to apply to physicians only, more recent texts name the eldhealth care ethics, which applies to all the health care elds, or bioethics, which includes bio-medical and behavioral research as well as treatment o patients.

Chapter 1

Birth, Lie, Death

L. Newton, The American Experience in Bioethics, SpringerBries in Ethics,DOI: 10.1007/978-3-319-00363-4_1, The Author(s) 2013

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2 1 Birth, Lie, Death

1.1.1 Stem Cell Research: Some Defnitions

Stem cell: an undierentiated cell, rom which an organism develops. Ordinarily

ound at the beginning o lie, although some persist into the adult body to becomereplacement cells.

Totipotent stem cell: a cell that has the potential to develop into a complete

organism.

Pluripotent stem cell: a stem cell that has the potential to dierentiate into any

o the three germ layers o ectoderm, mesoderm, or ectoderm, but not gametes, so

lacks the potential to develop into a complete organism.

Human embryonic stem cell (hES cell): pluripotent stem cell derived rom the

morula stage o the embryo, between 7 and 14 days ater conception.

Induced pluripotent human stem cell (iPS cell): a pluripotent stem cell that has

been articially created by reprogramming non-pluripotent human cells through

techniques that do not involve oocytes or embryos, e.g. through inserting certain

genes into a somatic cell.

Why would we want to do research with stem cells?

The study o any aspect o lie is a worthy project in itsel. But in the most

important projected application, we may be able to develop lines o cells that can

be placed in an impaired patient to repair serious damage that we cannot treat in

any other way. For instance, these cells may be able to turn themselves into nerve

cells in the severed spine o a paralytic, to connect the torn ends o the spinal cord

and restore unction lost in the injury. (Nerve cells are the only cells in the body

that normally do not regenerate.)

Superman: Christopher Reeve (19522004), a proessional actor most amous or his roleas Superman (or Kal-El or Clark Kent) in a series o movies eaturing the 1940s comic-book hero, was rendered quadriplegic by a all rom a horse in 1995. Reusing to accepthis condition as permanent and incurable, he quickly became a new kind o hero or thenation in his courage in his inrmity, his work or cures or spinal cord injuries, and orthe Christopher Reeve Foundation and the Reeve-Irvine Research Center that he and hiswie ounded or that research. Reeve was very public in support o stem cell research,which he was convinced would come up with a way to heal his spine, and strongly sup-

ported this research until the end o his lie. Reeve is not alone; such injuries are rare inpeacetime, but not in war, and our veterans hospitals have whole wards o Americans orwhom we have no other help. Any research that holds out hope or wounded soldiersyoung men with their lives beore themhas ample justication, in welare and in justice.

Cells placed in a brain may be able to repair the brain damage caused by seizures,

also Parkinsons Disease and possibly even Alzheimers Disease.

Alzheimers Disease, strokes, brain injuries, seizures, and other insults to the brain:There are several degenerative diseases that attack the aging brain, o which AlzheimersDisease is only the poster child; traumatic brain injury is one o the more common hor-

rors o the current wars, and hemorrhages in the brain (strokes) accompany the increas-ing afuence (and high blood pressure) o the people o the modern world. All o themdestroy brain tissue, which, as above, cannot regenerate. And they are all increasinglytroublesome: soldiers who would have died in all previous wars are being saved or a lieo brain impairment; diseases o age are increasing as the population ages; strokes that

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3

used to kill now only injure. Could pluripotent stem cells, placed in the brain o one su-ering rom one o these conditions, take on the character o the brain in which they areplaced, grow to replace the neurons lost to disease or trauma, and restore the damagedbrain?

Considering the immense suering such diseases cause, to those who suer romthem and possibly even more to the caregivers, any research that can hold out any

promise o relie has a strong utilitarian warrant. Then why would such research

be controversial? Because not all parties to the debate are utilitarians. Consider: I

we are dealing with embryonic stem cells, the research requires growing a human

embryo or about a week, then destroying it to harvest the stem cells. But many

people believe that the humanity o the human person begins with its biological

beginning, at conception; that the ertilized egg (and a ortiori every stage o the

embryo thereater) is a ull human being with ull human rights. In that case, the

act o destroying the embryo to harvest the cells is the killing o a human being,or, in the eyes o those who dene the embryo this way, murder.

Most would disagree with this evaluation, but the duty o respect or human lie

at any stage o its existence may demand at least that the destruction o embryos

not be casual and wanton. I, given the possibilities or relie o the terrible su-

ering o paralysis or dementia, it would be irresponsible to abandon stem cell

research, at least, as the research continues, it should be regulated, watched, just

to make sure that unoreseen abuses are not taking place. It should be noted that

the embryo that is so destroyed is usually a rozen embryo let over rom In Vitro

Fertilization attempts, ater the donor couple has borne a child and has donated theembryo or research. Should it not be used or research, it will be destroyed.

The same question does not arise, o course, i we are dealing only with skin

cells treated to the point o pluripotency, but a question has already arisen about

the possibility that urther manipulation might return such cells to totipotency

the condition o the initial ertilized egg. In that case, would the manipulated skin

cell become a human being? The thought is disquieting.

1.2 Cloning: Ought We to Attempt to Clone Humans?

What is a clone? Strictly speaking, a clone is a group, any number o geneti-

cally identical organisms, like identical twins or triplets. We tend to use the word

to mean a single organism, demonstrably genetically identical to another. Clones

may occur naturally, as in normal identical twins. Or they may be constructed by

mononuclear reproduction, extracting the DNA rom a somatic cell o the parent

organism, enucleating a viable egg cell rom the recipient, and placing the DNA

into the egg to create a complete being, which inserted into the recipients womb,

then goes on to develop normally.

The possibility o cloning, mononuclear reproduction, was rst raised in

the early part o the twentieth century by German embryologist Hans Spemann,

who had received the 1935 Nobel Prize or Medicine or his work in embryonic

1.1 Issues Surrounding the Basic Material o Lie

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development. By the 1960s, molecular biologists were experimenting with rog

eggs, and through the 1970s there were claims o successul cloning o rogs and

mice, widely suspect. Its worth noting that even the earliest work on cloning was

accompanied by claims o success and heated accusations o raud; this type o

work has never been non-controversial.Meanwhile, the laboratory techniques were improving; in 1978 the rst test-

tube baby (Louise Brown, see below) was born. A lamb cloned rom embryonic

cells emerged rom Cambridge, England, in 1984, calves rom Wisconsin and

sheep rom the Roslin Institute in Scotland ollowed in the 1990s, and nally, in

1997 rom the same Roslin Institute, came Dolly.

Dolly: Ian Wilmut and his colleagues, building on the earlier work o Steed Willadsonin Texas, claimed the rst lamb cloned rom a ully dierentiated cell (taken rom hermothers udder). She was named Dolly, or Dolly Parton, since the cell had been

taken rom a breast. The breeders delivered the lamb on July 3, 1996, but waited sevenmonths to announce it in February 1997, to make sure that the patents on the processeswere granted. There are several ways to produce clones; Dolly was born o Somatic CellNuclear Transer (SCNT), which takes the nucleus o an adult cell and implants it in anegg cell where the nucleus has been removed, or uses the somatic cell with an enucle-ated egg cell by a small electric current. (The two procedures result in slightly dierentcomplements o mitochondrial DNA; Dolly was born o the second.) The birth caused anenormous stir, although Ian Wilmut was the rst to point out the vast ineciency o theprocess: he had started with 277 eggs used with sperm, recovered 247 o them, trans-erred the healthiest 29 at the blastocyst stage to sheep wombs, resulting in 13 pregnan-cies, three o which came to term and one o which survived. Dolly was anxiously cared

or, kept away rom sources o disease, but developed arthritis early in lie and died at avery young age rom a common degenerative condition.

That was Dolly, and there are easier ways to get lambs or the shepherds would

have been out o business centuries ago. Moreover, in a major disappointment or

those who had been dreaming o creating humans identical to themselves, Dolly

did not even look like her mother: her mothers ace was black, Dollys was white.

(The same result occurred in the rst attempt to clone a cat, careully watched by

all Tabby-lovers who could not bear the thought o separation rom their petsthe

clone was calico, all right, but in a totally dierent pattern o spots.) The sci-entists pointed out that clones constructed this way are notidentical. Contrary to

popular belie, the nuclear DNA, contained in the transplanted nucleus, is not the

complete genetic blueprint o the individual. Nuclear DNA provides only some o

the genes needed or a complete organism. The rest o the genetic material is sup-

plied by the egg itsel, the mitochondrial DNA outside the nucleus. So Dolly was

not identical with her mother, along several dimensions, and most o the clones

since (mice, a cat or two) are distinctly dierent rom their sources. Meanwhile,

an indenite amount o congenital traits (characteristics present when the organ-

ism is born) are determined by the prenatal environment in the womb.

When news o Dolly broke in the news media, the U.S. Congress leaped into

the breach with a law orbidding (the constructing o) human clones. The alarm

seems premature. Ater all, why would we want to clone humans? Thats hard to

say; many considerations just to this point could lead us to decide that there is no

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5

reason at all to attempt to clone a human. First, its an awul lot o trouble (and

expense) or very small returns. Dolly took 277 tries, as above, and at the end, we

didnt have the same sheep at all. Second, the clone may have inherited more

trouble than identity rom its origins. From the early death o Dolly, we have rea-

son to believe that an articially constructed clone may be not an ospring, anidentical child, but a late-born twin, physiologically the same age as the source,

and destined or early illness and death. (The age o any organism is governed

by the length o certain structures in the nucleus, called telomeres. With each

division o the cell, the telomeres get shorter, and when they are gone, the cell can

divide no more and aging is in process. Was Dolly born with the aging telomeres

o her mother?)

Why is cloning so controversial? What on earth was the U.S. Congress araid

o, when they rushed to pass anti-cloning legislation? The question has some inter-

esting answers. While cloning turns out to be dicult, uncertain, and disappoint-ing in its results in the real world, it has ormed the stu o antasy and science

ction or a long time.

The Boys rom Brazil: One o the rst works to invite the public to contemplate the clon-ing o a human being was a ctional thriller, The Boys rom Brazil, written by Ira Levin in1976. Levins previous works had included The Stepord Wives, about a community thatreplaced its uppity women with agreeable robots, and Rosemarys Baby, about a womanimpregnated by the Devil; the author was at home with horror. InBoys, the morally prob-lematic activity o producing a clone at all is combined with the morally abhorrent moti-vation o the ultimate success o the Aryan Project and the memory o the Holocaust, as

the plot involves Dr. Jose Mengele (alive and well and living in Paraguay) in a schemeto produce 94 replicas o Adol Hitler. The story has Mengele making it into exile witha liter o Hitlers blood, and hiring willing native women to contribute eggs and becomeimpregnated with the cell bearing Hitlers DNA. When born, a cooperative ex-Nazi leclerk in an adoption agency in New York nds adoption applicants that match the pro-le o Hitlers parents, and the baby boys are raised by these adoptive parents (sworn tosecrecy about the act o adoption) until the age o 14. Then, unortunately or them, theadoptive athers have to die, since thats when Hitlers ather died, and that means 94 mur-ders. The story begins as the murder list is drawn up in a Brazilian bar by Nazis in SouthAmerican exile, and ends (in an enormously satisying scene) with Mengele being eatenby Dobermans.

The sheer evil o demonic invention that permeates the tale is punctuated with

actual errors, no ault o Levins: the story assumes that the procedure guaran-

tees pregnancy and normal birth almost every time, making the terriying scenario

seem to be just around the corner. Further, it assumes that the clone is in act iden-

tical in all respects to the source o the nuclear DNA, just as a metastasized can-

cer cell is the same tumoras the originalthat each o the boys is literally Hitler.

(The protagonist, a Jew, a Nazi-hunter on the model o Simon Wiesenthal, has

great diculty bringing himsel to shake the hand o one o the boys, seeing him

as Hitler; he defects only at the last minute a urther plot to kill all 94 o the chil-dren, a plot born in ear o a high probability that any one o them would dupli-

cate Hitlers career.) Is it possible that such works asBoys, orBoys itsel (it was a

best-seller), is the source o the moral panic about cloning? There is little else to

account or it; our experience o identical twins, who share mitochondrial as well


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as nuclear DNA, the same prenatal environment and usually the same upbringing,

dressed in identical sailor suits or the rst twelve years o lie, is that they rarely

turn out to engage in identical careers or other behavior. Clearly the Boys project

o duplicating all the conditions o Hitlers boyhoodincluding World War I?

is silly antasy. But some horrors strike deep in the human soul, and are hard todislodge.

South Korea took an early lead in cloning research (later discredited by over-

ambitious alse claims), succeeding in 1999 in deriving a our-celled embryo

rom a somatic cell o an inertile woman; given the controversies, they did not

implant the embryo. Meanwhile teams o researchers in Massachusetts, Japan,

and Scotland cloned goats and pigs with modied DNAthe goats modied to

produce special proteins in their milk, and the pigs modied or greater compat-

ibility with human tissue, to be used or tissue replacement. In 2000, ater many

tries, a team at the Health Sciences University in Portland, Oregon, led by GeraldSchatten, managed to create a clone o rhesus monkeys the old-ashioned way

not by evacuating the nucleus o an embryo and inserting a somatic nucleus,

but by growing an eight-celled embryo, splitting it manually into our parts, and

implanting each into the womb o a receptive emale. Embryo-splitting, or divi-

sion o the original cell mass, is the way twinning (or in this case, quadruplet-

ing) would naturally occur in the womb o a pregnant emale, and the process was

thereore less complicated and prone to ailure than the mononuclear reproduction

techniques that gave us Dolly.

1.2.1 Experiments with Stem Cell Therapy

While cloning may not have much o a uture, the use o stem cells to replace

impaired cell systems in seriously impaired patients seems to hold out much more

hope. What can we expect rom stem cell therapy? As it happens, we can watch

current experiments, or there are claims that it is being done now.

Stem Cell Therapy (Quackwatch): A website named quackwatch, that monitors medi-cal scams and illicit claims, has a long list o medical centers around the world whichpromise miraculous cures or everything rom A to ZALS, birth deects, cancer, dia-betes, epilepsy and so on. The tragic incurable wasting and degenerative diseases, likeParkinsons and muscular dystrophy, are most requently mentionedprecisely those dis-eases that kill slowly, horribly, and prematurely, and or which modern medicine holdsout no hope o cure. Several o these have had headquarters briefy in the US, but tendedto have their materials and equipment seized as the FDA determined that they werescams. These snake-oil establishments operate most reely in China, the Ukraine, and theDominican Republic and other locations in the Caribbean. (It is pointless to list the cent-ers and their locationsthey move constantly, since continual relocation is their best

deense against national monitors attempting to reduce the number o medical scams thatprey on the alse hopes o their citizens.)

Some interesting results have been achieved inserting certain kinds o stem cells in

animal models. But there is no evidence, anywhere, that any o these experimental

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therapies are doing any good at all or humans. Most o them do no harm, but

signature alse claims (or instance, that their stem cells do not trigger an immune

reaction in the recipient, or that cells injected in the abdomen inevitably nd

their way to the brain and become nerve cells, or that the amount o cells inserted

makes no dierence) reveal that the treatments lack any scientic basis.

1.3 Assisted Reproduction

Ought we to manipulate the process o conception and birth in order to help

inertile couples have a baby? Are the various techniques o assisting reproduc-

tion (In Vitro Fertilization, AIH, AID, egg donation, surrogate motherhood)

compatible with the integrity o the natural process o conception and birth? Nodoubt there is some risk, and inevitable nancial burdens, to the parties who par-

ticipate; how seriously should that be weighed, as long as inormed consent is

obtained?

1.3.1 Technology o Assisted Reproduction

I a couple wants a baby, and the usual way doesnt seem to be working, whatmeans are available to raise the probability o a healthy pregnancy? First, the

couple needs to nd out i there is some medical problemsomething in them

blocked or not unctioningthat is causing the problem, and whether or not it can

be cured. The path to producing a healthy ovum (egg) in the womans body, or

instance, is very complex, starting with hormones released by the hypothalamus

in the brain. The path to producing healthy sperm also starts in the hypothalamus

and involves multiple steps, ailure o any one o which will prevent the ejacu-

lation o sperm into the vagina. The egg has to be released rom the ovary, and

travel down into the allopian tube; the sperm has to penetrate the cervical mucus,move quickly through the uterus and meet the egg in the allopian tube. I there

are blockages at any point in this journey, ertilization will not happen naturally,

and i there is no evident remedy, alternative methods must be explored. Lets take

these one at a time.

Remedying medical conditions: I the allopian tubes, or instance, are blocked

by disease, they can be cleaned out. The process is not easy, and does not always

work, but i it does, a natural pregnancy becomes possible. There are other physi-

cal conditions that may count as illnesses, or handicaps, that stand in need o rem-

edy. Those who (like the theologians o the Roman Catholic Church) hold that allreproductive technology is wrong, have no objection to any medical interven-

tions that relieve illness, disease, or handicap.

Ater that, anything done not to relieve inrmity, but to promote pregnancy,

counts as reproductive technology.


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AIH, Artifcial Insemination by Husband: I it is determined that the major

obstacle to pregnancy is some ault in the process o copulation itsel, the hus-

bands sperm can be collected, concentrated, and introduced back into the wies

vagina when subtle temperature changes indicate that she is ovulating. Sometimes

this works.AID, Artifcial Insemination by Donor: I the husband turns out to be iner-

tile, donor sperm is available in sperm banks maintained by medical schools.

Donated sperm, screened or disease and physical resemblance to the couple, may

be introduced into the vagina as above.

In Vitro Fertilization: When conception cannot take place within the body o

the woman, the wies eggs can be retrieved by laparoscopy to be mixed with the

husbands sperm and hormones in a Petri dish, where conception can take place.

This is how the rst test-tube baby, Louise Brown, was conceived. The resulting

zygote can be inserted directly into the uterus (although current practice attemptsto place it up the allopian tube, i the tube is undamaged, where normal concep-

tion would occur). Estimates vary (and should be taken with a grain o salt), but

many thousands o babies have been born rom IVFover a million rom some

kind o articially assisted reproduction technology (ART). Still, o those who

attempt to conceive through IVF, three quarters will not, in the end, have a baby.

Egg donation: The greatest obstacle to pregnancy is the age o the egg, not the

age o the gestator (the woman who carries the etus and gives birth to the baby).

A small industry has grown up retrieving the eggs o younger women or donation

to women over 40 who still want a child. Given the demand, there is no end insight or this procedure, or market.

Surrogate motherhood: I the woman is simply unable to conceive or bear

a child, one alternative or the couple is surrogate motherhood, in which the sperm

o the husband is introduced into a ertile woman contracted or the purpose, who

will carry the etus to term, deliver it and transer it to the contracting couple.

This practice has been particularly controversial, since there is a strong hormonal

motive or the surrogate to bond to the child, and nd it very dicult to give the

child up to the couple that hired her services. (SeeMary Beth Whitehead, below)

Surrogate gestation: I or any reason the gametes o both husband and wieare not desirable or reproduction, and the wie is unable to bear a child (i disease

has required a hysterectomy, or instance) the couple may avail themselves o an

egg bank or a young and healthy egg, a sperm bank or appropriate healthy sperm,

and the services o a healthy surrogate gestator, to receive the implanted embryo

and bring the child to term. In this case, the child may have ve parents: egg

donor, sperm donor, gestator, and the couple that originally contracted or the child.

The position o the Roman Catholic Church: Essentially, that God created procreation,and it doesnt seem to need any help, so we should keep our cotton-picking ngers o the

whole process.Louise Brown: The rst baby born as a result o In Vitro Fertilization (IVF) wasLouise Brown, who came into the world on July 25, 1978. Her birth was the result omany, many years o research. Physiologist Robert Edwards had spent decades learninghow to bring about superovulation, the production o multiple ova, rst in mice, thenin humans, so that the many mature eggs needed to increase the chance o ertilization

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might be available. Patrick Steptoe, a gynecological surgeon, had been working, not withEdwards, or the same amount o time on techniques to retrieve ertilized eggs throughlaparoscopy (a new technique using beroptics), to bring them outside the body so theycould be ertilized in vitro. Realizing they could help each other, they joined orces, butat the time, the late 1960s, such collaboration was very dicult, which may be one rea-son why these techniques were not developed earlier. (At the time they were working,the communication between their laboratories was a grueling eight-hour commute, andEdwards lab lacked hot running water.) They recruited 100 inertile women to be thesubjects or the new IVF technique, mixing the husbands or donated sperm with eggsretrieved rom the wie. Lesley Brown, whose allopian tubes had become blocked romectopic pregnancies, was one o these. When all 100 attempts ailed, they kept going, stilltinkering with the hormone balance. On the 102nd try, Louise was conceived, and wasborn healthy. (Now an adult, she is still healthy.)

Surrogate Motherhood: In surrogate motherhood, where one woman agrees

to conceive and bear a child or another using the others husbands sperm, just

whose child is the baby when it is born? Consider Noel Keanes innovative

practice:

Noel Keane, Mary Beth Whitehead and the Sterns: In 1976, Noel Keane, a lawyer inDearborn, Michigan, negotiated and drated the rst ormal contract between a surrogatemother and a married couple in the United States. The practice caught on: by his deathin 1997, Keane counted 600 children around the world whose births he had arranged.Many were named or him by grateul parents. In the seven years ater he had plungedinto a largely unknown area o law by drawing up his rst surrogate-parenthood contract,Mr. Keane rapidly became the best-known lawyer in the eld. In 1983, against a back-ground in diculty in adoption and a scarcity o white babies available or adoption,Mr. Keane said he had been contacted by more than 2,000 couples. He opened InertilityCenters in regions like Caliornia, Indiana, Michigan, New York and Nevada to bringtogether childless couples and prospective mothers. In the years aterward, in the midsto courtroom battles and philosophical, moral, religious and legislative arguments, heremained a strong proponent o surrogate motherhood.

The practice was not new; the book o Genesis describes Abrahams decision to pro-duce a son by his wies handmaid, when his wie was apparently inertile. From thebeginning, the practice was controversial; proponents depicted surrogate parenthood as ahumane and ethical way to allow inertile people to reproduce, while opponents called thetechnique an abuse o scientic technique that equated lie with a product. They called itbaby selling.

In a typical surrogate motherhood agreement, a woman is articially inseminatedwith sperm rom a man whose wie cannot conceive. At term, the surrogate mother sur-renders her parental rights, receives a ee and turns over the baby to its biological ather,whose wie may then become its adoptive mother. In a typical arrangement 20 years ago,the child-bearing woman received $10,000 (rates varied). The ees included $7,500 to thecenter, as well as charges or legal, medical and travel services and paternity tests. Alltold, couples in the 1980s and 1990s were advised to expect to pay $22,000 to $25,000.

Although other cases raised issues about surrogate parents, the uror reached a crucialpoint in 1986 in a trial in New Jersey that grew out o a surrogate motherhood arranged byMr. Keane. Mary Beth Whitehead signed a $10,000 contract to carry the baby o WilliamStern. But ater the child was born, Mrs. Whitehead changed her mind and sued or cus-tody o the child, known as Baby M. Mr. Stern and his wie, Elizabeth, won custody o thegirl, but the State Supreme Court in New Jersey ruled that commercial surrogate-mother-hood contracts were illegal and awarded Mrs. Whitehead visiting rights.

In an interesting twist on the case, Mary Beth Whitehead (by then pregnant by anotherman and remarried) sued Mr. Keane, saying he had not adequately screened her or mental


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and emotional barriers to carrying out the contract. In 1988, she won an out-o-court set-tlement reported at $30,000 to $40,000.

Why is assisted reproduction so popular now? In part, because it is thereit

is now possible to get help in reproduction, where it was not beore, and child-

lessness seems less a judgment o God and more an obstacle to be overcome. But

more, inertility seems to be on the rise. Environmental actors could be involved

in inertilitypollution, especially chemical pollution o the water, has been sug-

gested as a cause. More likely, the decisions on the part o a signicant portion o

contemporary women to pursue careers and establish themselves in business and

proessional lie beore seeking marriage and amily have led to a general practice

o motherhood at an advanced age. The emale body is most prepared or mother-

hood between the ages o 18 and 27; ater that the viability o the eggs decreases

rapidly. We have become a culture where women do not marry young, and do not

wish to start amilies until they are sure they can provide or them as they want(whether or not the childrens athers remain in the picture). Like all lie choices,

this choice requires trade-os, and easy pregnancy is one o them.

Pre-Implantation Genetic Screening: one reason to use In Vitro Fertilization

is that it permits Pre-implantation Genetic Diagnosis (PGD), screening or genetic

conditions present in the parents amilies that they wish to avoid in the child. This

procedure involves teasing a single cell out o a blastocyst (in which all cells are

identical) and testing it or the suspected DNA. The success o this procedure,

and the act that i no genetic disease was detected, the blastocyst would simply

supply the missing cell and go on to become a complete human being, led to thepossibility that we might be able to originate an embryonic stem-cell line with-

out destroying an embryo, so avoiding the controversy outlined above. Objections

were promptly raised, that the pluripotent cell so detached could itsel become a

ull human being in the proper setting, so the controversy remains.

Genetic Enhancement: Testing or genetic disease always reveals the sex o

the child; should the procedure be used to get a desired sex? There are prospective

parents to whom the sex o the child is terribly important. This question raises the

urther questions o the use o the IVF technology to promote genetic enhance-

ments. Right now we dont know what, i any, genetic patterns are associated withthe traits o above average height, blond hair, or musical ability, although we know

that they are genetic. The traits most desired by parents (or at least most under

discussion when the subject arises), like high intelligence and leadership qualities,

are surely highly complex in their genetic component, and more the product o

environment and early learning than o genetic endowment.

Note: the technology o Surrogate Motherhood, where the child is assigned to

his ather, is the same as that o Articial Insemination by Donor, where the child

is assigned to his birth mother. What diers is the understanding o the contracting

parties as to the ultimate home o the child.Ought we to intervene to perorm surgery on the developing etus in the womb

to modiy undesirable developments? What sorts o intervention might be appro-

priate? May we use surgical methods to enhance its lieintrauterine surgeryor

is that still too experimental to justiy? I the mother decides that she cannot raise

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this child, may we intervene surgically to abort the child? Or is the unborn child,

at whatever stage o development, already a human person with ull rights to lie?

This question has a tangled, and occasionally violent, history o its own.

1.4 The Abortion Controversy

Much o the debate has turned on whether or not the law should permit a woman

to procure an abortion i she wanted one; that issue was settled by the Supreme

Court in 1973, in the decision oRoe v. Wade.

Roe v. Wade: First argued in December, 1971, Roe v. Wade (410 U.S. 113, 1973) wasnally decided on January 22, 1973, and became the law o the land. To sum it up, the

U. S. Supreme Court struck down as unconstitutional laws o Texas and Georgia thatorbid all elective abortions except to save the lie o the mother. The Court ruled that aselection o Liberty rights, derived rom the ourth, th, and ninth amendments to theConstitution as an implied Right o Privacy, protected a womans right to choose whetheror not to bear a child. That ruling made abortion legal or the entire course o a pregnancy.In act, only the rst trimester abortion is protected by the right o privacy, as betweenthe woman and her physician; in the second trimester, given the states legitimate interestin the health o women, the state may require that abortions take place in legally regulatedhealth care acilities; and in the third trimester, given the states interest in the protectiono lie, the state may orbid abortions completely, except to save the lie o the woman (or,in practice, when severe impairment has been discovered in the etus). In the very exten-

sive opinions, majority, concurring, and dissenting, virtually all questions on the permis-sibility o abortion are addressedthe implications or the health o women, the value opotential human lie as opposed to actual human lie, and the Constitutional protectionsextended to marital decisions, as ound in the earlier decision on the use o contraceptives,Griswold v. Connecticut(381 U.S. 479, 1965)

Is this a religious question? Because o the early leadership o the Roman

Catholic Church in public opposition to the legalization o the procedure, the

abortion controversy has oten been characterized as a religious controversy,

between believers and non-believers. There is no basis to encourage or discourage

the choice to abort etus in the aith background o the United States; the Bibleis silent on the issue. That has not stopped religious leaders rom advocating or

positions they eel are vital to their aith communities.

We can certainly acknowledge the value o human lie without imputing moral

rights that do not exist or challenging legal rights that do. How can this value

be measured, and compared with other values? Is there any way o determining a

generally accepted value o a developing lie? Or is that value inevitably relative

to social and political circumstances (the value o a male etus in the womb o a

queen eared to be barren, where the throne needs a male heir, or instance, versus

the value o a badly impaired etus who will surely be a drain on the society allo its lie i it survives to birth)? It has been argued that the value o the etus is

relational, that is, as it is valued by the parents who will nurture its lie and plan

or its uture. In such approaches, the question o the objective value o the etus

simply does not arise.


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Meanwhile, the political battle goes on. The pro-lie agenda includes lobby-

ing or legislation that will orbid as many abortions as possible, given that they

cannot get a universal prohibition. So in many states, such lobbies have encour-

aged legislation to require the parents written consent beore a minor can obtain

an abortion. Courts have tended not to enorce such laws, as unjust to the pregnantgirl; they are cognizant o the probability that in many cases o minors becoming

pregnant, the minors ather or other close relative has athered the child.

One success was a ederal ban on the procedure known as intact dilation and

extraction, or partial birth abortion. In this procedure, perormed late in the

pregnancy or at any time that a dead etus cannot be expelled normally, the etal

body is pulled rom the mothers body by the eet (breech extraction), leaving

the head inside the uterus; the physician then inserts a cannula into the base o the

skull and evacuates enough o the contents o the head so that the rest o the etus

can be taken out, dead but intact. The procedure would be used when extremehydrocephaly (the lling o the head with spinal fuid up to double its normal size)

or other lethal condition made normal delivery impossible. The pro-lie contin-

gency took note o the act that such hydrocephaly can develop without killing the

etus in utero, meaning that the physician actually ended the etus lie by inserting

the cannula, ater part o its body was outside the womans body, i.e. born. And

i the killing o a normal born baby is murder, then this procedure must be mur-

der, or partial murder. Again, the hope was that i Congress could be induced to

call thatprocedure impermissible, it would be a shorter step to calling all induced

abortion impermissible.In theory, intact dilation and extraction could be used to perorm a very-late-

term abortion on a healthy etus, but no scenario has been proposed that would

make sense o its use or that purpose. Legally, in most states, such abortions are

illegal anyway (ollowing the holding inRoe v. Wade, that states were permitted to

pass laws orbidding third-trimester abortions save to save the womans lie.) I the

etus is that ar along, (and the womans lie is in danger) abortion by hysterotomy,

incising the uterus and physically removing the baby, as in a Caesarian section,

would surely be used.

But dont etuses have a right to lie? The concept o right to lie is spurious,essentially a rhetorical term born in politics, existing in no viable scheme o rights.

We didnt have a right to be conceived and born, and we certainly have no

right not to die, as we will all discover. In law and ethics, the notion o a right

encompasses only those matters where exercise is a matter o choice. (There may

be imputed rights or the incompetentthose rights which the incompetent would

choose to exercise i competentbut these can generally be reduced to duties

incumbent on the guardians.) I we insist on treating the abortion question as a

matter o rights, it turns out that it is the same rightthe right not to have our

bodies subjected to unconsented inringementthat is violated in the etus i itis aborted and in the pregnant woman i she is orced to continue an undesired

pregnancy.

There is certainly a legal right, on the part o a pregnant woman, to seek an

abortion i thats what she wants. That legal right does not end the ethical discussion.

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Whatever else it is, the termination o a pregnancy is always the ending o a human

lie, and is thereore always to be taken seriously; there can be better and worse rea-

sons or electing to abort.

1.5 Dilemmas o Impaired Inants

When a child is born very badly impaired, either very premature or suering rom

a genetic or other congenital handicap, what measures should be taken to preserve

its lie? Where no measures will succeed in saving the child (those born under

200 g, or instance), lie-sustaining measures may clearly be withheld. Beyond

that, this question does not permit o a general answer. But the dilemmas all turn

on the value to the child o the impaired lie that is oreseen or it, and the capacityo the parents to deal with it.

1.5.1 The History

The Johns Hopkins Baby: For most o human history, there was little that could be doneor a child born with obvious decits. The Greeks and Romans exposed children whowere less than perect, crippled or sickly, leaving them on hillsides to die o exposure (orpossibly be adopted by people who wanted a child no matter how crippled). Through therst hal o the 20th century, it was regarded as standard practice or an obstetrician toallow a clearly impaired child to die, telling the parents aterward that it was stillborn.(Note: until about 1960, anesthesia was liberally used during childbirth, so at the birthboth mother and child were unconscious. The child would not start breathing unless stim-ulated, usually with a whack on the buttocks, so the physician had a ew minutes to exam-ine the status o the child, and decide whether it should live. The ather was nowhere nearthe delivery room.) When a child was born with a severe impairment, especially one orwhich there was no cure, neonatal pediatricians would oten allow the child to die pain-lessly in the newborn nursery (Dr. Ray Du o Yale wrote compassionately o this prac-tice). I the baby survived to go home, physicians oten counseled the parents to put thechild into an institution where it could be cared or until it inevitably died ater a brie lie.

In 1971, when the Johns Hopkins Baby was born, things were changing: there werenow ways to resuscitate a child who was not breathing, some progress had been made onacilities or the handicapped, and most signicantly, parents and child were awake andalert in the delivery room. Fathers now attended births, and little anesthesia was used. Sowhen the Johns Hopkins Baby was born, the parents were very much part o the decisionprocess. He was a male with Downs Syndrome, a trisomy on the 21st chromosome withimplications o heart problems predicting a short lie, severe mental retardation, and intes-tinal problems. His most pressing intestinal problem was duodenal atresia, a blockage othe intestines between the stomach and the small intestine. This condition is not compat-ible with lie; no ood can be processed until the atresia is surgically corrected. The par-ents had to choose whether or not to consent to the surgery; given the other implicationso the Syndrome, they decided not to. So the inant was placed in a bassinet in the NICU,with a sign Nothing by mouth, and let to die. It took almost two weeks or the inantto die (probably because the nurses were giving him water when no one was looking);publicized by a lm made by the Hastings Center or Biomedical Ethics, the case aroused

1.4 The Abortion Controversy

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a small restorm. Should the parents have consented to the surgery? Should the hospitaland the state have allowed them to reuse? Does the baby have rights separate rom theparents judgment o his best interests? Did their decision amount to abuse?

The national debate occasioned by the Johns Hopkins Baby marked a changing

scene in neonatal care: a new proession o pediatric intensivists was born, special-izing in precisely those conditions that an earlier generation o pediatricians had

pronounced untreatable, and an earlier generation o obstetricians had pronounced

stillborn. The change in the attitude o the medical proession was echoed in popu-

lar attitude, as the next cases proved. By 1981 (in Danville, Illinois), when Pamela

Mueller gave birth to conjoined twins, so seriously compromised that separation

did not seem possible, some physicians counseled withholding treatment, which

would not have been unusual in such cases two decades beore, and with which

the Muellers agreed. But this time other physicians disagreed, an anonymous caller

alerted Protective Child Services, the state charged the Muellers with neglect andassumed custody o the twins. Several court battles later, the Muellers got their

twins back. Surgeons attempted a complicated separation that killed one o the

twins, but the other survived long enough to enter school. The controversy was still

estering a year ater the twins were born, when Inant (or Baby) Doe came along.

Inant Doe and the Baby Doe Regulations: Inant Doe was born on April 9, 1982, inBloomington, Indiana, with Downs Syndrome and an intestinal deect, in this case a tra-cheoesophageal stula, that made it impossible or him to eat normally. The question, aswith the Johns Hopkins Baby, was whether to attempt surgery to repair the stula or to

allow the baby to die. Considering the anticipated diculties o raising a Downs child,the parents elected not to consent to the surgery. The hospitals administrators disagreed,and asserted that there was a moral duty to treat the baby aggressively. They summoneda Monroe County judge, John Baker, who heard both sides out in a night meeting at thehospital, and concluded that the parents had every right to withhold consent to the sur-gery. (O note, Inant Does ather was a schoolteacher with long experience working withDowns Syndrome children.) The case would have ended there, but or the act that anassociate district attorney decided to take the case to the county circuit court, which rea-rmed Bakers decision, then to the Indiana Supreme Court, which did the same, and thento the United States Supreme Court (to Justice Paul Stevens, who had jurisdiction overthat region). By this time the baby had died, but not beore that district attorney had been

on several news spots and talk shows arming the childs right to lie, hence right tosurgery. The publicity had two eects: it recruited the pro-lie movement, born in thewake oRoe v. Wade, into the cause o regulating the conduct o newborn nurseries, and itinuriated C. Everett Koop, then Ronald Reagans Surgeon General, a pediatrician whosemedical specialty had been surgery on inants. With Koops encouragement, Reaganordered the Departments o Justice and Health and Human Services (HHS) to mandatetreatment in such cases, and make it a crime not to treat such inants.

States, not the ederal government, have jurisdiction over such crimes as homi-

cide and negligence, so the Justice Department was initially puzzled as to a legal

route to enorce Reagans will. Eventually it decided that cases o non-treatment

o impaired newborns were cases o Discrimination against the Handicapped,and thereore in violation o the Rehabilitation Act o 1973 (section 504). Never

mind that the law, an extension o the Civil Rights legislation, had been intended

to apply to employment, public access and school settings, not medical settings,

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and to adults and children, not inants. HHS required a large poster to be put in

all neonatal intensive care units, Discriminatory Failure to Feed and Care or

Handicapped Inants in This Facility is Prohibited by Federal Law. The poster

was accompanied by a toll-ree telephone number, the Baby Doe Hotline, so

anyone in an NICU could report abuses that they had observednurses, law-yers, parents, anyone at all. Baby Doe Squads o lawyers, physicians, and

selected administrators would be dispatched to the location o any phone call to

investigate, commandeer all medical records, and, i necessary, command physi-

cians to perorm treatments they would otherwise not have perormed.

Misconceived rom the beginning, the rules did not last long. In 1983, the

American Academy o Pediatrics sued in ederal court to block implementation o

the rules, and won. Meanwhile, there had been some hotline reports, resulting in

the deployment o Baby Doe squads; in no case did the squads nd an endangered

inant, but they surely had a mightily disruptive eect on the lie o the hospitalthey visited. The nal demise o the rules occurred in theBaby Jane Doe case.

Baby Jane Doe: The little girl who was known as Baby Jane Doe (Kerri Lynn, as herparents called her) was born on October 11, 1983, with spina bifda (divided spine,a condition in which the spinal vertebrae have ailed to close over and contain the cen-tral neurological structure, the spinal cord), and consequent meningomyelocele (or mye-lomeningocele, a condition in which the meninges and the nerve bundle o the spinalcord itsel protrude through the opening in the vertebrae in a protrusion on the back othe baby). This condition almost always results in paralysis below the point where themeninges protrude, and a ailure o the spinal fuid to drain properly through the spine,

collecting instead in the brain in a condition known as hydrocephalus (water on the brain),which can crush the developing brain and result in severe mental retardation. Such a con-dition must be treated, i at all, with immediate surgery to close the wound in the backlest it become inected (meningitis), and the implantation o tubes called shunts to drainthe liquid rom the brain. Sometimes urther surgery is necessary as the child grows; theprognosis varies, and as in the Baby Doe case, the physicians disagreed. Baby Jane Doewas transerred to Stony Brook Hospital on Long Island, because it had a better NICU.Dan and Linda, the parents, were presented with the choice: to authorize immediate mul-tiple surgeries, or let the child die, with only comort measures provided, death predictedwithin ve days or so.

Badly conficted (they had very much wanted the child), the parents decided against

surgery, judging it to be unkind to the baby, opting or the comort measures. Comortmeasures included ood, water, antibiotics, and as much love as possible, provided bythe parents. Kerri Lynn promptly deed predictions; her wound closed on its own, and shecontinued to live.

At this point a legal-political circusthere is no other wordbegan. Reporters, drawnby the publicity surrounding Baby Doe and the physicians disagreement, brought the caseto the newspapers. A Vermont Pro-Lie municipal bonds lawyer, Lawrence Washburn,announced that he would rescue the baby, and led suit to compel surgery. Several newsconerences later, he was dispatched back to Vermont by Judge Melvyn Tannenbaum, whopointed out that he had no standing to sue in this matter. A local lawyer, William Weber,was appointed Guardianad litem (the babys legal guardian or this legal proceed-

ing). Weber listened seriously to all sides as the situation changed beneath themKerriLynn was not dying, but continued to recover. Eventually, even as lawsuits continued todrag through the courts, Weber authorized surgery to install shunts in Kerri Lynns skullto drain the hydrocephalus. By now the Federal Government was alerted, and HHSannounced that a Baby Doe Squad would shortly arrive to set matters right.


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That was the end o the Baby Doe Rules. The Squad arrived and demanded the hos-pital records or Baby Jane Doe. The hospital adamantly reused to release the babysmedical records to the Squad. HHS appealed, and in 1984 the decision was made nalthe Federal government had no right to seize and inspect hospital records. There was aurther, snail-paced, appeal to the United States Supreme Court, which eventually ruled(Bowen v. American Hospital Association et al. 1986) that hospitals had no obligation torelease records in such circumstances. The Baby Doe Regulations were gone.

Kerri Lynn went home with her parents in 1984, age 5 months. Five years later shewas tooling around in a wheelchair, talking, going to school, interacting with other chil-dren. She is still alive, but with serious decits.

Lessons o the case o the Babies Doe: The Inant Doe case arose rom converg-

ing streams in American lie: First, the rapid advancement o medical technology

and the competitive struggle among the hospitals to save more babies, at lower

weights, with worse conditions; second, the increasing intrusiveness o the Pro-

Lie movement, that by now seemed to think it could parachute down anywhereand orce matters to its preerred conclusions; and third, the contemporaneous

assertiveness o the new conservative stream in American politics, epitomized

by Reagan and Koop, that by now was poised or the long-term dominance o

American politics. The Baby Jane Doe Case, on the other hand, reminds us that

the American preerence or privacy and the prerogative o the parents to make

decisions or their babies has a deep consensus behind it.

The state o the question: controversies continue. Parents are generally con-

cerned to make sure only the best is done or their baby, and inclined to ask that

everything be done to save it. This concern seems to be more requent andintense now, increased by the acts that mothers have babies much later, meaning

that they have less chance to make it up i a rst baby dies, also that babies born

o compromised eggs o older years are more likely to have genetic problems, also

that there are new areas o expertise in doing surgery on inants, opening tempt-

ing possibilities or medical and surgical experimentation. When parents demand

surgery, or some other sort o exotic therapy to prolong the lives o those compro-

mised by inevitably lethal conditions, Trisomy 13 and Trisomy 18, or instance

is it appropriate to encourage them?

May the irreparably impaired childthe anencephalicbe an organ donorto save the lives o other inants, even though a successul organ transplant will

require the deliberate ending o the childs lie?

The question o the acceptability o using an anencephalic child as an organ

donor is beloved o philosophers, or it puts two o our central imperatives fat

against each other. O all impaired inants, the one most removed rom the pos-

sibility o any really human lie is the anencephalic baby: it has no brain. The cer-

ebrum and cerebellum are absent, and the skull has not developed; only the top

o the brainstem is visible as we look into its stunted uncovered head. Yet unlike

other lethal conditions with which a child may be born, anencephaly does not

afict the rest o its organskidneys, liver, lungs and heart, intestines and skin

which can be healthy and normal at birth.

Anencephaly is a developmental problem, not genetic; it arises as an extreme

case o spina bida (Baby Jane Does impairment), where the neural tube does not

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close in the crucial early weeks o the pregnancy. The skull ails to develop, and

the growth o the brain is stopped just above the brainstem. It is incompatible with

lie; the anencephalic generally dies in a matter o hours, days at the most. So its

healthy organs are o no use to it at all. Meanwhile, babies are born every day with

non-unctioning organ systems, who might live a normal lie i organs could beound or transplant. Unortunately, it is much harder to nd a suitable organ donor

or an inant than or an adult, which is hard enough; most organ donors come

rom motorcycle and automobile accidents, and inants in such accidents rarely

sustain the kind o injuries that would cause brain death yet leave the rest o the

organs unctioning, the only condition in which organs may be taken or donation.

About 2,000 inants are born each year in need o a donated organ. Inants born

with Potters Syndrome (non-unctioning kidneys) or hypoplastic let-heart syn-

drome (incomplete heart) are simply slated to die; yet i the anencephalics organs

could be transplanted into these inants (the surgery is not perect, but the surgeonsknow how to ensure a very high probability o success), one anencephalic could

save ve or six other inants, who might go on to long and healthy lives. The case

or donation o the anencephalics organs is airtight, except or one disagreeable

detail: the transplant surgeon has to kill the anencephalic on the operating table.

There is no other word or it. The inant has suered no trauma that would ren-

der it brain dead, and its very much warm and breathing. O course we could wait

or it to die, to lose all autonomic systems (heartbeat and breathing), but at that

point the organs would be unusableas the brain stem slowly dies, the organs lose

oxygen, and by the time death is complete, they are irreversibly damaged. So wecant wait or that; we have to operate when the child is brain absent but not

brain dead. The surgeon has to place the inant on the operating table knowing

that two or three o his planned incisions will end its short lie.

Utilitarian reasoning yields the perectly clear conclusion: we have here an

inant with healthy organs who will be dead in a matter o hoursit is not being

deprived o anything. It is not even a case o sacricing one healthy inant in

order to save several others (although, as John Rawls pointed out some years ago,

Utilitarian reasoning could justiy that, too); the anencephalic loses nothing. And

i the surgery is perormed, several inants who would have died will live ull andfourishing lives. Add to the simple value o the organ recipients lives the joy elt

by their parents as their children are saved, and most especially add the joy o the

mother o the anencephalic, who sees her tragedy turned into a miracle o saved

lives and community rejoicing. How could there be any objection to the donation?

Yet deontological reasoning requires that we put the rule rst, and ask, what

would the world be like i such surgeries are authorized? Today it is the hopeless

anencephalic whose lie is ended to serve the needs o others. But nature is merci-

less to philosophers; every natural condition comes in degrees along a spectrum. I

the skull starts to orm too late in the lie o the embryo, ater the brain has alreadystopped growing at the brainstem level, we get hydranencephaly, where the brain

is developed little more than the anencephalics brain, but the skull is there,

lled with liquid, so the child appears almost normal. Surely it would be no sac-

rice to use hydranencephalics, too? There are other non-genetic developmental


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injuriescerebral palsy comes to mindthat can result in total retardation,

unawareness o surroundings, and generally a lie that is barely sentient. These

would be good candidates or organ donation, too. But then where do we draw

the line? I we dont want to be asking at every point in the spectrum o impaired

children, is it OK to chop this one up or partsand we dont want to be askingthatwe are much better o with a simple rule, that no child born and still even

minimally alive shall be broken up or donations, no matter what joy would be

occasioned by doing that.

Lets see how those arguments play out in a real case.

Baby Theresa: Laura Campo and Justin Pearson, an unmarried Fort Lauderdale couple,conceived a child in 1991. Because she had no health insurance, Laura did not seek prena-tal care until she was eight months pregnant. Thats when she ound out that the child shewas carrying was anencephalic, and it was too late to abort. She decided to carry the baby

to term to donate its organs.Ater Theresa Ann Campo Pearson was born on March 21, 1992, the couple tried toarrange or organ donation, but the neonatologist said he would not harvest the organsunless she was declared brain dead (no neurological responses at all, fat EEGtheHarvard criteria adopted in all jurisdictions as a precondition or legal organ harvest:see below). Two judges told the couple that the organs could not be removed beore braindeath, and as the case was beore the Florida Supreme Court, Theresa died.

Laura Campo and Justin Pearson went on to advocate publicly or a change inFloridas laws to permit harvesting the organs o an anencephalic child, to no avail. TheSupreme Court agreed to hear the case, even though moot, or purposes o determiningpolicy, and ater due deliberation, decided there should be no change in the law, which

stands to this day in every US jurisdiction.

From the point o view o ethics, the Baby Theresa case is incomplete, or we

never meet the projected beneciariesthe inants whose lives would have been

saved had the donation been allowed to go through. Surely these inants, and their

amilies, were stakeholders in the issue; should they have been permitted a voice?

(It is not clear that they were ever identied.)

1.6 Problems at the End o Lie

How can a person exercise some control over the treatment he or she will receive

as lie ebbs to its close? Are the Living Will, the Advance Directives generally,

the Health Care Agent, the Power o Attorney, the Conservator, adequate means to

protect the patients dignity to the end? How can we make sure that the patients

desires are put into eect? We might note at rst, that the right to reuse treatment

has not always been recognized.

Who should decide what medical treatment is necessary and what treatment

should be withheldthe patient or the physician? For close onto 2,500 years, the

answer was, the physician. The relationship between physician and patient was

close to that o parent and child, or possibly priest and penitent. The physician

had esoteric, highly complex, knowledge that he shared with no one (except other

physicians o his school o medicine). It was never clear to the patient that the

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knowledge did not contain some special magic, or relationship to the gods, unath-

omable by mortal standards. Physicians were taught, or those 2,500 years, to reas-

sure patients no matter what the prognosis, not to discuss the patients disease with

him, lie to him i necessary to keep hopes up and compliance with the medical

regimen strong, and i the patient balked, to enlist the amily to keep the patientobedient to doctors orders.

This attitude, doctor knows best, has been characterized as baseless arro-

gance; actually, it had a solid scientic basis, possibly unknown to patient and

physician alike. Beyond the treatment o obvious injurieswounds, broken

limbsuntil about a century ago, the physician had very ew remedies that actu-

ally worked well. (As a matter o act, many commonly used medical treatments

or internal ailments, treatments like bleeding and harsh laxatives, did more physi-

cal harm than good.) The physician rarely cured anything at all. Instead, he did

what he could to allow the patients body to heal itsel, prescribing rest, warmth,bland ood and soups, and occasionally giving opium or alcohol to dull pain. The

physicians greatest contribution to the patients welare, in act and in the theory

taught in medical schools, was to relieve and prevent that stress that comes rom

ear o bodily illness and death, which was known to be harmul to the patient.

Should the physician display lack o condence, or hesitation, or deerence to the

patients wishes, he would be stepping out o his role, and would no longer have

the tonic eect on the patients condition that they both had come to expect. That

eectthe elt improvement in the patients condition brought about simply by

the condent reassurance and treatment o the physician into whose hands theyhad placed themselvesstill exists; we call it the placebo eect, rom the Latin

I will please, and i we are doing clinical research (see Research unit, below) we

have to control or it, or it will throw o our results. It is well to remember that

or 2,500 yearsuntil the twentieth centurythe placebo eect was almost all we

had.

In all those years, how did the physician deal with reusalswith patients who

balked, said they did not want the treatment that the physician proposed? The

physician generally categorized such reusals as what psychiatrists would call

denialthe patient is so rightened, or deranged by his sickness, that he cannotsee that what the doctor has ordered is really right or him. The act that the patient

demanded to have his wishes honored with regard to his treatment, and that the

patients wishes disagreed with the physicians judgment, was sucient evidence

to the physician that the patient was conused, panicked, or not in control o his

nerves, and simply needed more reassurance, and possibly a little amily coercion.

The stakes, and misunderstandings, escalate when the patient, or the patients

guardians, wish to reuse lie-sustaining treatment, that is, treatment that will

continue at least the heartbeat and provision o oxygen or the patient. I the

patient reused such treatment, physicians tended to assume that the patient wassuicidal, and needed treatment with anti-depressants. I the guardians reused

such treatment, the immediate conclusion was that they were trying to kill their

ward (probably to get his money). Asserting the valid and controlling right in

these cases, the right to have ones bodily integrity respected, was very dicult


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or patients and guardians alike. The issue o patient participation in the decision-

making process surrounding medical treatment rst entered the literature in a

gruesome case o burn injuries: a young, active man terribly burned, trying to con-

vince the doctors to let him die.

Dax Cowart: Donald Cowart was 25, a bachelor who loved outdoor sports, and enjoyedworking with his ather, with whom he was very close. In April, 1973, he and his atherdrove their jeep to a parcel o land that his ather was considering or purchase. Unknownto all, the valley was lled with propane gas, leaking rom a buried pipe. When theyreturned to their car and started to leave, a spark rom the jeep ignited the gas. A violentexplosion and re took the lie o his ather and let him with third-degree burns over two-thirds o his body. He should have died. But he was still alive when he reached the hospi-tal, so the hospital kept him alive. The pain o massive third-degree burns is the worst weknow; 45 years ater Daxs accident, our burn units use sophisticated sedatives that keeptheir patients essentially asleepthey will never remember their time in the burn unit.

Dax was not so lucky. The pain was excruciating, the physicians were araid to give himadequate pain relie or ear o killing him, and they insisted on moving him rom his bedand bathing him in chlorinated disinectant twice a day or ear o inection. (That madethe pain worse, much worse.)

Dax argued that he had nothing let to give him any quality o lie. He was blind andalmost dea (that, interestingly, is how he acquired the nickname Dax: the physiciansdiscovered that he could hear Dax when he could not hear Donald. He later adoptedthe name as his own.) His hands were burned so grotesquely that he would never be ableto use them properly again; his legs were badly disabled (he could crawl). He had losthis ather and partner, he could not work, and he could never again take part in all theactivities he had enjoyed. He pleaded with the physicians to leave him alone and let him

die; they reused, even though a psychiatric evaluation had shown Dax to be competent tomake his own decisions. Ater years o treatments, changes o acilities, at least three sui-cide attempts ollowed by reluctant agreements to resume treatment, Dax started unction-ing againwon a lawsuit against the gas company to give him some income, completedlaw school, practiced law successully or awhile, married, and settled into a reasonablycomortable lie. He argues to this day that his wishes should have been respected, andthat he should have been allowed to die as soon as the extent o his injuries was known.

Daxs case was the rst. In 1973 and or all the years prior, no one would have

thought o respecting the wishes o a person who reused lie-sustaining treat-

ment. But Daxs rational single-mindedness raised the question: whose lie is it,

anyway? Why should Dax be orced to accept excruciating treatment against hiswill? Should Dax have been accorded the right to make his own decisions? The

case was written up or the bioethics literature; as with the Johns Hopkins baby,

a short lm was made and circulated; there was a much-noticed Broadway play,

Whose Lie Is It, Anyway? The right to reuse treatment was not established by

Daxs case, but he certainly put the question on the agenda o bioethics.

The case that did establish that right, and brought the questions to the gen-

eral public in unorgettable orm, arose in the worst circumstances that could be

imagineda decision to provide or withhold lie-sustaining treatment o a beauti-

ul young woman caught in the middle o a medical controversy that ended in theNew Jersey Supreme Court.

Karen Ann Quinlan: Karen Quinlan was 21 when she ell into a coma during a party;she apparently had not eaten that day, had taken barbiturates o some sort, and consumed

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alcohol, which intensies the eects o barbiturates, especially on an empty stomach. Sheretired to a bedroom in the house to take a nap. When she was ound, she was not breath-ing; no one knew how long she had been that way. They rushed her to St. Clares Hospitalin Denville, NJ, and put her on a ventilator (or respirator) to restore lung unction. Thiswas in April, 1975. She was kept on the ventilator all summer, making no progress towardregaining consciousness. In the all, her parents reluctantly concluded that she would notregain consciousness, and asked the hospital to remove the ventilator.

Unsurprisingly, the hospital reused; the AMA had declared all removal o lie-supportto be euthanasia, mercy-killing, which amounts (i the patients opinion does not count,and it did not) to murder, so the physicians were understandably unwilling to go along.The hospital was araid that i they acceded to the amilys wishes, the amily wouldchange its mind and sue or malpractice. (Recall, malpractice can be shown to haveoccurred i (1) the patient outcome was undesirable, and death is usually held to be unde-sirable, and (2) the physicians behavior is a departure rom normal standards o medicalpractice in a community, and taking a patient o a ventilator to die, in 1975, was justthat.) There ollowed a battle o epic proportions, all over the newspapers. The Quinlanshired a lawyer, Paul Armstrong, who oered to sue to have Joseph Quinlan appointedKarens legal guardian (she was an adult, but she was now incompetent, so a guardianwas needed) or purposes o allowing Karen to die; the argument turned on his contentionthat Karen was being denied her civil rights, specically the right to die. The theory wasunworkable; there is no right to die, anymore than a right to lie, or most o the samereasons. There is a right to reuse treatment, but that right had yet to be established inthe courts; remember this was 1975. A simple request to have her ather appointed as herguardian might have succeeded; the assertion o a right to die did not.

The lawyers came back with a petition to have her ather appointed guardian; that wasdone; Joseph Quinlan requested (ordered, now that he was court-appointed) the removalo the ventilator, so the hospital did itvery slowly, over a period o weeks, slowlyenough so that Karens young body could be weaned rom the ventilator and start breath-ing on its own. Now what? The physicians who had examined Karen were clear that herbrain was gone, had most likely been gone beore she was ound and rushed to the hospi-tal. The brain cannot survive without oxygen, and deprived o it, it is the rst part o thebody to die.

Karen was in a coma, in the kind o coma that we now call a persistent vegetativestate (PVS) or minimally conscious state. In PVS, the patient does not just lie therein a deep sleep. There are periods o waking and sleeping, tossing, sometimes thrashingaround at rst, making noises, mostly moans o some sort, perspiring, opening and clos-ing the eyes. Further, rom inactivity and disconnect between the brain and the muscles,Karen had become rigid with contractures, when the body bends itsel back into a etalposition just because there are no muscles to keep the limbs extended. It was not a prettysight, and it would not end or ten years. Karen was transerred to a nursing home (therewas nothing more that the hospital could do or her, or to her), and lay in PVS until June1986. Eventually pneumonia, the old mans riend, claimed her lie.

The Quinlan case was a true landmark; let us review its signicance.

Until Matter o Quinlan, medicine, law, religion and the public at large were

in agreement: death is the worst possible outcome o any medical situation; when

a patient is very sick, physicians will do everything to preserve the patients lie,

however minimal that lie may be, in the course o trying to restore all biologi-

cal unctioning and getting the patient well. This shared conviction had lasted or2,500 years. But until the 1970s, there had been ew ways to prolong the lie o the

dying patient. One organ system or another would ail, and there was nothing to be

done or that, then the heart and lungs would ail, and the old ways o determining


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deathput a mirror in ront o the mouth to see i the patient is breathing, put

your ear on the chest to listen or a heartbeatwould tell you soon enough when

the battle or lie was over. (Dax Cowart would have been dead o inections

within days o arriving at the hospital.) At the end, only opiates would make a di-

erence (and, schooled in the understanding that it is appropriate and expected ordeath to be accompanied by pain, they didnt use very many o those).

The 1960s and 1970s had seen revolutionary advances in mechanical means o

substituting or ailing bodiesdialysis machines, ventilators, debrillators and

mechanical massage to restart stopped hearts, nasogastric and intravenous eed-

ing tubesand had changed the medical landscape orever. From that point on,

patients could be kept minimally alive or indenite periods ater the brain was

gone and the human had disappeared. Two separate (and very distinct) questions

were brought to public debate by these developments, and they tore the eld o

bioethics aparteven as they created it. Until this point, physicians and otherpractitioners had had no idea there were serious philosophical questions lurking

at the base o their practice, and until this point, philosophers had had no interest

in exploring the philosophic bases o proessional practice in any eld, including

their own. Now suddenly there were two deeply theoretical questions in dispute,

importantliterally, matters o lie and deathand both medicine and philosophy

had to learn how to solve them. For starters, they had to learn how to think about

them.

The rst question raised was, what is death? When is a person dead? Our

understandings o the determination o death in the mid 1960s were not ar romthose that had accompanied the human race rom its beginningssee i the per-

son is breathing, listen or a heartbeat, and i those are not there, the person is

dead, and the physician would pronounce death. (We now call this cardio-

pulmonary death.) That denition had been rendered obsolete in the early 1960s

by the development o the heart-lung machine which could take over breathing

and heart unctioning or a patient during open-heart surgerybut no one noticed

the impact on the denition o death, since the heartlung machine was only used

or short periods o time in the process o trying to heal someone. Then, in 1967,

Denise Darvall suered irreversible brain damage in an automobile accident inSouth Arica, and Dr. Christiaan Barnard transplanted her still-living heart, kept

alive on a heartlung machine, into a dying cardiac patient, Louis Washkansky.

But i Denises heart was still aliveand that was the point o the transplant, ater

allshe couldnt possibly have been dead by cardio-pulmonary standards. Was

she really dead?

The question could not be ignored, because organ transplantation held out new

and vital hope or patients dying o organ ailure. To retrieve viable hearts and livers

rom cadavers, we have to be able to keep those organs oxygenated, and that means

we have to keep oxygenated blood fowing through them, and that means we haveto keep the heart pumping and the lungs breathing. (Kidneys had been transplanted,

especially between twins, or some time. Kidneys dont count

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