Sci r nc~
CASE STUDY IN
Abstract-Insight into how American society is dealing
recent and potentially far-reaching
breakthroughs in genetics and bio-medicine and
and moral issues they
raise, can be gained :hrough studying the fate of one significant new intervention: amniocen-
the amniotic Ruid for the purpose
gaining gcnetic information about the fetus.
While the cloning
human beings,”test-tube“ babies, genetic surgcry and many other often
debated genetic tools are for the present-
science fiction, amniocentesis is already,
being performed increasingly on pregnant women and
in deciding whcther or not the fetus
of particular interest because
can be used both
(by detecting and hence leading
malformed fetuses, foremost those afilicted with
Down’s syndrome) and for euphenic purposes, that is the selection
specific biological features
.such as the child’s sex (by using amniocentesis in conjunction with selective abortion).
Decision making on the advisability
utilizing amniocentesis and othcr genetic tools pro-
interrelated planes, one of medical research and evaluation, and one
assessment and policy making.
This article highlights three major issues common
all new medical techniques, in particular
t o such novel ones, as genetic interventions: (a) Can practicing physicians be relied upon
evaluate the new procedure and determine the nature and extent
its use? (b) I f not they, then
who shall conduct the large scale evaluation studies the new interventions may require? And (c)
who shall assess the evaluation findings and pass on the nunierous social, moral, and legal
issues they raise?
1 NTRODUCTl ON
the past hundred years, science and technology have expanded man’s control over
new frontier is being crossed in the area
descendants, heretofore determined by nature, will be
human choice and responsibility, both as individuals and as
community members. Yet the ecology movement, if nothing else,
awareness of the less than sanguinc consequences of unbridled human intervention. While
only a few of
deny and forego the bcnefits science and technology hnvc t o
ofler, there is increasing recognition of the need for man’s mastery ovcr his tools. Hence
the growing intercst
how we manage. Insight into how American society
new breakthroughs in genetics and bio-medicine and the social, legal and
raise, can be gained through studying the fate
one significant new intervention: amnio-
centesis, a pre-natal test
Amniocentesis, unlike cloning of human beings,
gestation, genetic surgery and
Nancy Castleman, Carol Morrow and Pamela Doty for comnients on
previous draft of
this papcr. Carol Morrow also served
a research assistant on this paper.
benefitted from the comincnts
Scientific Director of the Center for Population Research
Institute of Child Health and Human Development. This papcr is the product of a socicty and health prograni
conducted under the auspices of the Center for Policy Research.
tAniitai Etzioni’s most recent
New York: Macmillan,
sociology at Columbia University and director of the Center for Policy Research.
many other. hotly debated genetic possibilities is presently available. Thus, this discussion
can be anchored
a concrete empirical base. Debates
not we should tolerate
the growing of babies
artilicial wombs, advance asexual reproduction. or indeed, genctic
general, often have an unrealistic quality, a futuristic tinge. These techniques
now available; their specific attributes (safety, effectiveness, costs) are not known;
hence, their medical, personal. and social conscquences remain largely matters of con-
jecture. Moreover, neithcr the social nor the medical environments into which such
innovations will one day be introduced can as yet be more than speculated upon.
amniocentesis is now being performed on an increasing number of pregnant women and,
the information gained, decisions about whether or not to abort particular
fetuses. are presently being made.
Decision-making on the advisability of utilizing this new procedure. for what purposes
it might be applied, and who should control it, proceeds on two interrclated planes,
one of .medical research and evaluation; and one
normative assessment and policy-
MEDI CAL PLANE
Amniocentesis is currently being used for two widely different purposes, only one of which
is related to genetic manipulation. The first, and still by
the more common use, is to
gather information about the Rh factor. This has been done
over ten thousand cases
weeks of pregnancy.[l] Used
this way, amniocentesis provides information
about the fctus' hemoglobin level and,
the fetus is found to be endangered by the mother's
antibodies, the physician may induce labor before the full term
fusion for the fetus. (This, of course, is not a genetic intervention; thus, this use of the
technique illustrates neither the dangers nor the opportunities,
any of the other issues
raised by genetic engineering.)
The following discussion is therefore limited
the second, more novel but expanding
use of amniocentesis, whereby amniotic fluid
pregnancy, yielding cells
the unborn fetus which are then examined for genetic attributes. While therapy,
the traditional sense of curing the fetus or redesigning its attributes
possiblc, the birth
a genetically amicted child can be avoidcd through abortion.
pective parents can continue this process of testing and abortion until a fctus free from
certain undesired attributes is conceived.
this second use of the procedure, between
ml of fluid are withdrawn from
the amniotic cavity by means of a syringe, introduced either transvaginally
nally. Usually this is accomplished between the 16th and
Withdrawals of fluid before the twelfth week are considered riskier,
the total amount of
amniotic fluid is still small, the amniotic cavity difficult t o locate, and the fetus
palpate and manipulate away from the needle. Once removed, liquid and formed elements
are separated by means
centrifugation, and then cultured,
procedure which takes at
least a week, commonly much longer. The culture
then karyotyped; that
number, form, and size
single cell are compared t o
pattern. Occasionally, amniocentesis must be repeated
the fluid withdrawn is inadequate
or the culture fails, or the results are equivocal.
use of the procedure
order to gain information about the condition of the
fetus is credited to
initially reportcd his findings
whilc Riis and Fuchs arc reported
using the test
has beell used
increasingly over recent years,
is still considered quite “experimental,” a long way from established practice.
However. a major systematic evaluation study is now underway at nine medical centers
across the nation. The study is being carried out under the auspices of the National Institute
Child Health Developinent,
directed by Dr. Charles Lowe. The evaluation process
involves a comparison of 1000aiiiniocentcsis subjects with a matched group
women not undergoing the procedure. The infants born to wonieii who were tested are
also being checked.
this, studies of amniocentesis have been based on smaller samples and have been
otherwise less comprehensive (e.g., did not test the infants for possible deleterious effects),
but the findings nevertheless do provide a good understanding of the issues involved.
According to the amnioccntesis studies conducted thus far, the procedure appears to entail
number of risks or complications which vary greatly
the frequency with which they
have been observed
seriousness of damage caused, and
how well they are documented.
The most common conlplication appears
be an infection caused by the insertion of the
of the cases, the procedure has been judged responsible for subsequent miscar-
riage.[lO] However, as these have often occurred quite
while after the test, and
cases the fetus seems
have been already dead when the test was performed, it appears
reasonable to assume that at least some of these abortions would have taken place
Finally, there remains the possibility that amniocentesis may damage the fetus
subtle ways; perhaps due t o the change
the amniotic fluid following
moval of some of it,
because the fetus’ environment is jarred by insertion
is believed by some that the ultrasound used
locate the placenta, t o protect
it from the needle, may damage the fetus’ hearing. Thus far there is no hard evidence t o
substantiate these fears.
Several researchers have summarized the cumulative risk posed by
fetal death, spontaneous abortion and vaginal bleeding as an “approximate complicatio~~
rate for the tests’ findings is also under scrutiny.
about fen percent of the
cases, the culture fails to grow,
other steps go awry and the test must be repeated. But
when usable readings are obtained, predictions concerning chromosomal abnormalities
(especially those associated with Down’s syndrome or mongolism) have proven very highly
With the procedure being medically evaluated, the disposition is t o defer passing judgment
on its normative value and social use,
such evaluation is completed. However, unlike
drugs, which must be tested and proven safe
doctors are permitted t o prescribe
them, amniocentesis-and most other
procedures like other technological iniiova-
tions-arc available and used until and unless
is prove11 unsound.
conducted by Nancy Castlenian of the Center for Policy Research.
random sample of gynecologists indicated they would reconimcnd
older, because the chances of
amicted fetus rise sharply
wi t h
thc mother's age.
However, informal checking
doclors suggests that younger womcn can find a doctor
who will administer the procedure. Indeed. 4.7
of the physicians Castleman surveyed did
t o women of all ages.
even before ihe niajor evaluation
study has been completed,
a sense, evcry pregnant woman, her spouse. and her physician,
must judge whether
not to use amniocentesis. Moreover. the super-study
the noli-medical questions amniocentesis raises.
clear-cut the medical choice
a person is
use this device
her body. and
public health authorities
will advocate i t, decisions can be made only after a number of issues,
which value judg-
ments play a key role, have been clarified,
heuristic purposes we can think of these issues as arranging themselves conveniently
in terms of four concentric circles. Each is concerned with the relati\.e normative "weights"
different outcomes. The circles are arranged
order from those where.
on the face of it, the fetus has been tested and found
be afflicted, t o those where it seenis
(a) The first circle encompasses those cases where amniocentesis is most clearly indi-
cated, whcre there is a high
probability of it being a highly debilitating
life-threatening. untreatsble, genetic ailment; mongolism is the prime example. Should the
fetus so amicted be aborted?
stake here is the difficult act of weighing the claims of
conflicting values t o decide which
those religiously opposed t o
abortion under any circumstances.
view the fetus as a live being and abortion as tant-
amount to killing, the answer may be simple, at least on the ideological level, though less
persons so committed, one value outweighs all others. But for those
not adamantly opposed to abortion, the question is
from simple. First, prospective
parents must assess how deeply unsettling they find the severe mental retardation and
physical disabilities niongolism entails; how attractive
unattractivc) they find a child
who is highly dependent on them and often quite affable, and their feelings about the
medical risks which abortion entails.[l4]
Also, there still remain a great variety of complex feelings about abortion even among
those not opposed to
.on religious grounds. These ambivalences are especially likely t o
i n the
case of amniocentesis because the test and hence any subsequent abortion
cannot be performed until relatively late
long as the risk for coniplica-
tions rises significantly when the test is performed before the 14th umk of pregnancy as
currently available data indicates,[l5] and as long as the laboratory culture requires
three weeks (efforts are being made to accelerate the process),[l6] abortion,
be of fetuses four
four and a half months old. That
be much more
developed and closer
viability than those usually aborted
birth control reasons.
not to abort a fetus
close to viability, yet suffering from a serious
genetic ami don, thus necessitates the difficult process of clarifying one's values and dcter-
mining the relative saliency of those which are mutually contradictory.
(b) The value balance, all other things being equal, changes with the woman's age,
because the risk
carrying a fetus severely afflicted with genetic disease rises with the
prospective mother's age. Different studies provide somewhat different ratios, but basically
the curve is
The normative qucstion here is !lot.
whether aboriion is
or not. but whether the risks nmnioccntcsis cntails are
acceptable. Ohvioirsly. those bccome less acccptable,
lower the probability of lindiilg
an afflicted fetus. but how low is low?
The basic qucstion, for those who accept abortion
principlc. is whether or not all
pregnant wornen should be adviscd
seek amniocentesis or only those above a ccrlain age'?
an age cut-off is established, where should
Some have written
on this matter as
were a question which could be answered with mathem;ilic;il precision
purely medical grounds. Dr. Fuchs. for example, has writtcn, "The risk of abortion due
trauma may be of the order of one
is certainly large enough
cases where the risk of a particular genetic disorder is
less than two per cent."[lS]
such a formula does
take into account the highly
unequal outcomes involved. One mongoloid does not equal onc miscarriage
a thousand danger of puncturing the fetus and the unknown but seemingly very low
probability that a genetically normal fetus subjecled
may be born uiider-dcvel-
assess how niany times
is worse to have a mongoloid child over a
this question could be answered, the decision might be reduced
a computational matter. For instance,
one considers mongolism to be roughly a hundred
times worse than a miscarriage, then assuming
one percent chance of inducing a mis-
carriage, amniocentesis should be acceptable
thus remains: for what age group are Ihe test-associated risks, ami?iocentesis entails accep-
table? Or how much risk is one
avoid certain diseases for one's future child?
do no! rule out abortion and accept a given dcgree of risk taking. must
next weigh how severe an
justifies abortion and/or
the mother and a
normal fetus. Besides mongolism. amniocentesis can identify a multitude of other fetal
amictions which are genetically based. Some, such
the Klinefclter and Turner syndromes
and galactosemia. which involve mental retardation, sexual underdevelopment. or malfunc-
tioning of vital organs, are fairly severe; others are much less serious.[l9] For instance,
Dr. Albert Dorfman, speaking
very debilitating disease
limited life expectancy,
"Assuming the parents have no moral objections to abortion, quite likely they will prefer
birth of a child
further pregnancies have a chance
producing normal offspring.
going one step further, what would be a reasonable
course of action
we discover a method
prenatal diagnosis for diabetes mellitus? How
would a physician feel about providing information that could lead
the abortion of
potentially diabetic children
While any qualificd doctor can rank order these diseases
order of medical severity. the
decision as to whether any one particular medical difficulty provides justifiablc grounds for
abortion and risk-taking is unavoidably normative.
(d) Finally, amniocentesis can be used t o detect genetic attributes
which prospective parents may
avoid. Most obvious is
sex of the fetus. Despite
thc procedure, a case has already been recorded in which amniocentesis was
detect sex and a girl fetus was aborted simply because the parents wanted a boy.
Ninety-six per cent
genetic counselors recently surveyed on this question by
James Sorenson of Princeton, stated they would oppose such use
amniocentesis,[2 I ]
though four pcr cent did favour
be forbidden. because
health risk for n'on-health purposes? Or would such a policy be unjustly inconsistent,
given that socicty allows taking of health risks for non-health purposes as concealing one’s
ethnic origin (a ma.ior motivation for plastic surgery of the nose) to hiding scxual experience
(restoring the hymen)? And. of course, the recent Supreme
dccision accords legal
lenience to abortion on demand, for whatever reason a pregnant woman may desire it.
In this context, can public hcalth authorities limit the use
amniocentesis to health
purposes only? And, if
on what grounds?
systematic attempt t o deal with the question of who should make all these normative
decisions, leads from considerations of the individual, to ever larger social circles, up t o
the society, as a whole, both as a polity, with institutional mechanisms for decision-making,
and as a community which has a set of values and taboos.
The most elementary decision point which comes into focus is that of the pregnant woman,
who is considering amniocentesis. consulting a physician.
the one side is the authority
granted t o the doctor by virtue of his specialized knowledge. Traditionally, the assumption
has prevailed that the doctors’ professional knowledge of medical matters gives them the
right t o render the final decision in matters. This would imply here, such ruling for
a given case. However, first the youth rebellion, and more recently,
women’s liberation, have focused attention on such sociological facts as the following:
most physicians are white males; (2) their own moral values affect their advice t o
the patients (e.g., a Catholic doctor told a 40 year old woman her head needed examining
when she asked for amniocentesis); (3) their behaviour is affected by non-medical
motives from profit
a measure of authoritarianisin; and, above all, (4) the decisiofis
not, and to test
not, are only
part based on knowledge of the relevant
medical facts. The final judgment is significantly affected by the balancing of values
one is better able
balance these values than the person who must live with the
outcome of the decision, it seems logical that the ultimate judgment has t o be made by the
pregnant woman, not her physician. (Of course, physicians cannot be expected to pcrform
the procedure if it violates their beliefs, but they can be expected to refer their patients t o
doctor willing and able t o carry out the woman’s decision.)
There is one significant counter-argument: that the patient does not have the intellectual
capacity to understand the medical information essential
a rational decision-making.
The crucial empirical question is whether this is true
sizeable segment, if not all, of the ten per cent
of the populations said t o
either be institutionalized
mental hospitals is dis-
oriented to the point where they are unable
make decisions which logically
their values and the information provided t o them.
other people, though, do seem
capable of handling fairly complex information, including multi-dimensional statistical data,
everyday life whenever they compare race horses and baseball teams
purchase autos and lawnmowers.
far as genetic matters are concerned, a good part of the rather limited data available
on the matter suggests that people tend to make fairly sensible decisions. An examination
of the data on what people actually do
such circumstances would take
far beyond the
bricfly. thc cvidcnce on balancc seeins
indicate that when asked
precise technical questions-Iikc gr;idu;ite studcnts 1:iking
writtcn test---many pcoplc fail.
For instancc, many cannot dcfinc prolxibilities propcrly or remciiibcr risk ratios. Howcvcr,
whcn thcir summnry conclusions and, above
their bchaviour is examincd,
a maniicr doctors would judgc
be sound. For instance. whcn the risk of having
genctically affccted child is high, and the deformity cxpccled is scverc, many morc families
refrain Trom having childrcn. or use amniocentcsis and follow
when indicated, than where risk is low
illness projcctcd is not severe. Moreovcr, of
those who acted counter
medical judgments, many have neither misunderstood
nor were unable
the idormation, but prcfcrrcd
have an amicted child over
violating their religious convictions, or taking thc risk of rcniaining childless. While the
data on this point is not uniform, and a
studics do suggcst less rational behaviour,
the tentative picture 1j.Iiich emcrgcs, on balance, is
most persons behaving
basically sensible manner.
Finally, one must take into account that the caprkity for rational decision-making can
developed, Thus, if patients were more often expected
reach thcir own conclusions,
if better health education were provided
schools and adult education programs.
were to discuss these matters more with each othcr (a likely occurrence once more were
render such decisions), then one might well expect these capacities
situations where decisions are regularly made for them by specialists.
In the case
amniocentesis and abortion, there is not one individual but
live with the result of the choice, the pregnant woman and her husband. What should be
the husband’s role
the decision-making process?
On the one hand, there is the position that the fetus is biologically part of the woman;
hence she is entitled to dispose of
as she desires.
it is said, any woman considering
abortion would almost certainly consult her husband
relations bctwcen them are strained, however, she should not be prevented from
having either amniocentesis or an abortion, lest her husband force her to have
perhaps a severely afllicted one, whose day-to-day care may well be left almost entirely to
the other hand, the husband does have various legal duties to the fctus.
following a divorce during pregnancy is legally entitled
financial support from its fathcr.
Siniilarly, a child born after its father’s death shares i n the inherilance of his estate.
just that such paternal duties should be balanced by some rights. Moreover, the family
bond would be strengthcned by viewing the married couple
a decision-making partnership
autonomous beings. The husband’s veto power can be avoided by
requiring only that the husband be informed and consulted, not that he consent t o the
The sociological position advanccd t hus far has been one whose philosophical underpin-
nings are humanistic and libertarian: individuals should be granted the ultimate judgment
decisions governing thcir lives. This individual right. however, must be balanced by the
only because whenever the aggregalion
free individual decisions causes
negative outcome. individuals
(as for example,
when air polluting exhaust
private autos poses a
perccive this negative aggregate outcome,
public’s rcprcscntatives have been cntrustcd by thc
individuals-to act on thcir bch;rlf,
protect everyone’s longer-run interest.
Yet thc most varied kinds of special pleading are
carried on under the aegis of
poorly deinonstrated or outright false public necds. Thus.
it would seem essential t o permit the curtailment
individual free choice-especially
the kind of intimate and vital matters exemplified by amnioccntesis-only when thc negative
public outconic caused by their unregulated aggregation is both clearly demonstratcd and
hold that amniocentesis should be rejected
the public interest. Some argue (ha! amniocentesis will seriously weaken our biological
heritage,[3 I] while others charge that it must inevitably lead t o some agonizing doubts
and arguments over what kind
worth producing. Available evidence
to wonder if any
these dangers is either clearly established or sixable enough
limit the use
amniocentesis for therapuetic
even breeding purposes.
The wcakcn-the-race argument is at first glance startling. On the face
genetic illnesses by aborting afflicted fetuses, would seem t o “purify” the race rather than
sap its strengths. The basis
the theory becomes clearer, however, when we reflect that
without any intervention via amniocentesis and abortion, many afllicted children would not
reach rcproductive age and hence the defective genes would die with thcni. Furthermore,
their parents \tould refrain from attempting t o produce normal children for fear
another amicted one. On the other hand, with amnioccntesis, afflicted children can be
replaced, not i n all, but
a significant sub-category
cases, bjf children who will often
carry the defective gene
a recessive manner.
has been argued, then, that the net effect
of the intervention can only be t o create a population ever more loaded with genetic defects,
until we are faced with the “man
tomorrow who must bcgin his day by adjusting his
spectacles and his hearing aid, inserting his false teeth, taking an allergyinjection
insulin injection in the other, and topping
life by taking a
However, careful calculations separately arrived
by several meticulous scholars in the
field have shown that even if we assume a very high replacement rate ( i t., five offspring
per average family) and a high
gene frequency (the rate
would be the square
the gene frequency,
in this case,
it would ncvertheless take
at least 390 years,
double the incidence
defective genes. Under less
pessimistic assumptions ( i t., two children
family, and an original rate
0.0001) it would take
gcneralions. Even 13 generations from now, genetic surgery
might well bc possible; mcanwhile,
wc need do is apply the procedure sotilewhat more
often in each gcncration.
seems needlessly cruel t o insist that today’s parents undergo
the agony and cost
deformed children t o “protect” future generations
small increase in testing.
The second spectre raised by opponents of amniocentesis is limited more spccifically
people were free
use amniocentesis (or other genetic interventions)to choose
their children’s biological attributes, which traits would be pronioted? Blonde or dark
brains? Might we not be faced with violent controversy? Yet, logically,
societal conflict would likely ensue only
the state were t o attempt
set goals in this area,
regime. The real issue up for dcbate is not \vhcthcr tllc state should be permit-
ted to force
favors. but the opposilc: should individuals be allowed
this cabe there is no nced for society-wide agreenients
breed, hence, there
little dungcr of Soveriimcnt-citizcn
Each couple can make thcir
sex inibalance that would result if people were to have free choice
sex of their offspring.
found it to be about scvcn per cent, enough
but not alarming societal dislocations. However, there are several valid reasons for
assuming that sex choice, if
will cause a much smaller imbalance.
and hence, little social dislocation. My earlier calculations were based on thc utilization of
technique which has little eniotional and economic cost (e.g., a douche). The use of
for breeding .purposes, entails sufficient psychological and
economic costs, not to mention health risks,
warrant assuming that only those who are
strongly committed t o having a child of a particular sex would undertake these measures.
This factor alone would reduce the likelihood of serious dislocation considerably. More-
over, under the impact of women's liberation, the number of persons who prefer boys seems
to be declining. The spread
college education also seems t o reduce the preference for
boys. In short, there
no reason to expect that the resulting dislocations would be
serious enough to prohibit the use of the technique for sex choice. The same seems t o hold
for other purposes, although this cannot be demonstrated here as it would require a nionu-
far, the question
not there is a reason for society to prohibit the
of amniocentesis has been ansFvered
the negative. There remains one important question
the public interest
the procedure? Requiring amniocentesis by
l aw seems so patently undemocratic
need not even to be discussed. But
perhaps public health authorities might advertise and advocate
via public education
Unless future studies
that the procedure entails significantly higher risks than those
thus far established, the answer seems t o favor promotion of amniocentesis for therapeutic
purposes-at least of the severely afflicted fetus. Children who are severely mentally retarded
or irremediably and severely
physically not only suffer greatly and present personal
agonies for most of their parents; they are a major public charge. Many parents dump
public institutions and do not even visit them. Certainly we should not
force mothers to submit to aninicoentesis
abort malformed fetuses; but it seems senseless
t o speak of natural
the case of parents who are now unaware
choice but that of giving birth
these children and then making them wards
the very least, prospective parents should be made aware of the alfernate ways we could
rechannel these economic resources, if they were to take advantage of amniocentesis and
give birth only
children who have none of the untreatable genetic malformations which
the test is capable
strong case can be made
promoting amniocentesis for therapeutic
goals, little societal good would seem
result from promoting it for breeding purposes,
as a matter of public policy (as distinct from individual desires).
only are we far from
agreeing on what attributes
might want t o breed, but the results
most such intcrven-
tions, while considerable for the individual, are likely
have, under practically all possible
conditions, little aggregarc effect.
(One possible exception would be the selective abortion
of those with the
additional data wcre to show a closer link
between this chromosomal pattern, which characterizcs one out of
male births, 
give thein a predisposition toward criminal insanity.
might be in the
encourage detection and abortion of
Since the need t o either require
other genetic intervcntions)
been demonstrated, there
no reason for govenment regulation of its use. There
are, however, three quitc different roles the public authorities could usefully fulfill.
First, the government should continue its support of the super-study evaluating amnio-
centesis, and extend the scope of the study to cover those empirical questions
Second, there is a need for dissemination of information both within the medical
community and amongst the public-at-large. Practicing doctors cannot be relied upon
update themselves, but there are many- ways
which doctors’ inforniational requirements
can be serviced. These have been explored often, hence they need not concern
great detail. Suffice it to say that one
the best ways to secure the doctors’ interest in
updating themselves, and to guard again3 their not doing
is to inform the public
directly. The Food and Drug Administration set the wrong precedent when it decided not
t o provide women with the full detailed information about the dangers of birth control
pills, but instead gave it to doctors-to give to women. Most seem not to pass
In this case, there is special reason
go directly to the public with information about
amniocentesis, its risks and opportunities, precisely because, as the above mentioned
survey shows, many doctors either will not counsel it
provide it only
woman specifically requests the test.
Finally, as values and taboos heretofore latently held are brought into consciousness and
examined, there is a need
institutionalized opportunities for reviewing the ethical and
legal issues involved-both to clarify alternatives and to focus public debate. The nation
specialists but also humanists, theologians, and
public representatives meet regularly to review the kind of questions posed by amniocentesis
and other genetic interventions yet to come.
examplc, when shall we say life begins?
doctor be required
consult the husband before performing amniocentesis
abortion? Should amniocentesis be “allowed” for breeding purposes? And
on. A Con-
explore these issues has been proposed by Senator Walter
Mondalc. It would include
representatives of medicine, social science, theology, and
other disciplines, who would study and focus attention
the ethical and social questions
raised by new genetic and biological techniques. And local review boards could supplement
it. The Coinmission might well provide a national forum and focus for such discussions.
Along similar lines, an international body, linked t o
The Commission’s conclusions could lead legislatures to adopt new laws
example, several of the
programs of genetic screening might well be made
voluntary). The Commission might also suggest specific educational campaigns promoting
amniocentesis to the public health service
refer women t o doctors who do; call for studies
amniocentesis but thus far neglected (such as the effects of anxiety
on prospective mothers); and, above all, focus public attention and debate on these matters.
The issues raised by amniocentesis are not less important than any of the other matters
society at large-from highway safety t o pollution control-which lay claim
public attention and civic action.
Amniocentesis: a case study in the nianaycnicnt of "genetic cngiriccring"
Hcnry L. Nadlcr and Albert
of Aninioccntesis in the Intrauterine Detection ofGenetic
Disordcrs," N o r
Henry L. NadIcr anid Alhcrt Gerhic, "Pi-ebent Status of Amniocentesis
Virginia Apgar rcfcrs tn tezts conductcd
early as the
of prcgnancy. Virginia
For othcr discussions ofoptimnl time to
perform the opcratinn,
Prenatal Diagnosis of Gcncric Discasc,"
Maidinan indicates that ten days
three weeks is required for ccll cultivation fnr purposes ofcylogenctk
analysis, though threc
weeks are required to obtain enough cells for certain biochemical studies.
Jack Maidman," Antenatal Diagnosis," in
New York, Appleton-Century-Crofts,
Ralph Wynn, ed., p.
New York, New York, June
(We will refer From here on
See for example, Atihrey blilunsky, Leonard Atkins and John Littlefield, Aninioccntesis for Prenatal
Genetic Studies, Obster.
H. Nadler and A. Cerbie, "Present Status
Amnioccntesis in Intrauterine Dingnosis
Genetic Defects," pp.
Fritz Fuchs, Amniocentesis: Techniques and Complicationc, in Maureen Harris ed.. Early
Dcfcrrs, Fogarty International Center Proceedings No.
(DHEW Publication no.
C. A. The Lancer
Povl Riis and Fritz Fuchs, Antenatal Detcrinination of Foetal Sex in Prevention of Hereditary Discascs,
Aubrey Milunsky, The
Diagrzosiso/Herrditar). Disordcrs, Charles C. Thomas, Springfield,
Albert Gerbie and Henry
Nadler, Present Status
Amniocentesis in Intrauterine
Genetic Defects, Ohsrer. G)*nerol.
Aubrey hlilunsky, Leonard Atkins, and
Littlefield, Amniocentesis for Prenatal Genetic Studicz,
Hercdifnry Disorders. p.
Nadler and Gerbie, Present Status of Aniniocenwh in Intrauterine Diagnosis of Genetic Defects,
See for example, Milunsky,
Preriaral Diagnosis of Hereditary Disorders, pp.
for example, Henry Nadlcr, Risks on Amniocentesis, in Early Diagnosis
Sarah Bundey, "Mongolism, the Most Common Autosomal Abnormality,"
Fuchs, Anotiocenrcsis: Tcchniqiics
Albert Dorfman, Genetics
the Practicing Physician,
Morton Stenchever, "An Abuse
Sir Harold Hiinsworth, former Secretary
the Medical Research Council, London, asserts, "The
ultimate responsibility is on the physician
decide what information
the patient," Sir Harold
Ellen Frankfort, Vaginal
New York: Quadrangle,
Barbara Seaman, Free
New York: Coward, McCann
John 1-letcher, Moral Problenls in Gcnetic Counseling,
For a discussion
which doctors are authoritarian, see Barbara Scaninn.
York, Coward, McCann and Geoghcgan Inc,
"Women, Medicine and Capita-
Our Bodics, Urtr SeIces (Boston Women's Health Course Collective.
mother reporting that "the neurosurgeon made the decisions" that her newborn dcfnrmed child would
Miller, Letter to the Editor, Cotiumwfnry (October
John Clausen. "Mental Disorders," in Robert
Mcrton and Robert Nisbct (eds,). Confemporary
SociuII'roblems 3rd. ed., New York: Harcourt Brace Jovanovich,
This point was made
Lconard, Gary A, Chase and Barton Childs, Genetic Counseling: A Consumers'
See for example,
Fraser, Genetic Counseling and thc Physician,
Hsia reports that
his study at Yale only 25yi
from planning further children.
Hsia, “Choosing My Childrcn’s Genes.” paper prcscntcd at thc
Science Annual Mceting, Washington,
Chapter 3, “Are We Debasing
example, Gerald Leach, The Biorra/s, Baltimore, Maryland, Penguin
33. Bentlcy Glass, “Human IHeredity and Ethical I’roblenis,” Perspcf.
Steinberg, The Gcnetic
Genetic Traits, paper presented at Rrcerrt Progrcss
Mediriite-Its Social ai d Ethical
Reported in Etzioni, Genetic
Chapter 3, “Are
Control, Scicnce and Society,” p. 1109.
Social-Psychological Structure of Fertility,” in In/ema/iona/ Popularion
For more detailed discussion,
39. MeBridge, ‘‘Prenatal Diagnosis: Problems ad Outlooks,” p. 135.
See Kenneth Burke, “The ‘XYY Syndrome’: Genetics, Behaviour and the Law,” DenrwLawJ. 46, 1969
Seaman, Free arid Female, pp. 229-23
Westoff and Leslie Aldrich Westoff,
Zero, Boston, Little
Brown, pp. 96-100.
42. Seaman, Frec
Fentalc, p. 232.
43. Senator Walter Mondale and other senators introduced
the 92nd Congress a bill to
Advisory Commission on Hcalth, Science and Society.” The bill
unanimously approved by the
Senate though not by the House, and has been re-introduced in the 93rd Congress as
(International Union for Scientific Study
Population, Vienna, 1959).
more on this,