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Taking any one of the readings from this class not covered by the reflective reading assignment you are to write an argumentative essay that addresses the same topic as the author. Your essay is to offer a critical assessment of the author’s position and defend its own thesis. If you are in agreement with the author’s position, you are called to offer an original and substantive defence of this position that supplements the author’s argument. If you are in disagreement with the author, you should demonstrate what the author has wrong and why, as well as provide a defence of your counter-position. A third alternative is to express a position of ambivalence. This is not a position of indifference. Instead, you are called to defend why you are generally torn by the topic and the question as it stands cannot yet be resolved. If you are ambivalent, you must both demonstrate what the author has right and what the author has wrong, as well as articulate what remains in question and offer suggestions for a direction forward. Link to the article I have chosen: https://learn.macewan.ca/bbcswebdav/pid-3041865-dt-content-rid-25764489_1/courses/007741-01-2211-1-BN95-10484/A.%20Lippman%20-%20Prenatal%20Genetic%20Testing%20and%20Screening.pdf

Prenatal Genetic Testing and Screening: Constructing Needs and Reinforcing Inequities 383
had suffered. She urged them to meet Heather in
person, which one of the men did. The two met
up at a coffee shop, then drov,e down to Lake
Ontario, where they had a heart-to-heart. They
decided to cut the liaison out of the arrangement
and go for a reimbursement of real expenses
incurred-expected to be about $3,000, all told.
In June 2009, both Heather and Bette met
the couple and their child. “It got validated, the
whole experience, by meeting them and actually
knowing what I helped create,” Heather recalls. “I
helped create a family. They’re wonderful. [What]
a very lucky child.” Later that month, she started
injecting herself with fertility drugs yet again.
The surrogate, who’d also carried the first
pregnancy, had since switched clinics and was now
working with ReproMed. The couple instructed
the new physician, Dr. Alfonso Del Valle, to be
extremely careful that Cox not be overstimulated,
and made it clear that her health came first.
Just days before the retrieval was scheduled
to take place, Dr. Del Valle counted the eggs in
Cox’s ovaries. There were too many, he told her,
and they weren’t maturing at the necessary rate.
He decided to call off the procedure, saying the
risk of another round of OHSS was too great.
Cox says she would have gone ahead if it had
been up to her. She’s glad it wasn’t.
Prenatal Genetic Testing and Screening:
Constructing Needs and Reinforcing Inequities
Abby Lippman
PRENATAL DIAGNOSIS: A TECHNICAL
AND A SOCIAL CONSTRUCTION
Of all applied genetic activities, prenatal diagnosis
is probably most familiar to the general population
and is also the most used. Prenatal diagnosis
refers to all the technologies currently in use or
under development to determine the physi(ologi)
cal condition of a fetus before birth. Until recently,
prenatal diagnosis usually meant amniocentesis, 1 a
second trimester procedure routinely available for
women over a certain age (usually thirty-five years
in North America),2 for Down syndrome detection.
Amniocentesis is also used in selected circumstances
where the identification of specific fetal
genetic disorders is possible.3 Now, in addition to
amniocentesis, there are chorionic villus sampling
(CVS)4 tests that screen maternal blood samples
to detect a fetus with a neural tube defect or Down
syndrome, and ultrasound screening.5 Despite professional
guidelines to the contrary,6 ultrasound
screening is performed routinely in North America
on almost every pregnant woman appearing for prenatal
care early enough in pregnancy. And although
ultrasound is not usually labeled as “prenatal diagnosis,”
it not only belongs under this rubric but was,
I suggest, the first form of prenatal diagnosis for
which informed consent is not obtained.7
Expansion of prenatal diagnosis techniques,
ever widening lists of identifiable conditions and
susceptibilities, changes in the timing of testing
and the populations in which testing is occur- .
ring, and expanding professional definitions of
what should be diagnosed in utero, attest to this
technology’s role in the process of geneticization. 8
But these operational characteristics alone circumscribe
only some aspects of prenatal diagnosis.
Prenatal diagnosis as a social activity is becoming
an element in our culture and this aspect, which has
had minimal attention, will be examined in depth.
From The American Journal of Law & Medicine, 17. 1991. Lippman, A, “Prenatal Genetic Testing and Screen:
Construction Needs and Reinforcing Inequities”, pp. 15-50. Reprinted with permission.
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384 Reproduction
A. Prenatal Diagnosis and the Discourse of
Reassurance
Contemporary stories about prenatal diagnosis
contain several themes, but these generally
reflect either of two somewhat different models.9
In the “public health” model, prenatal diagnosis
is presented as a way to reduce the frequency
of selected birth defects.10 In the other, which
I will call the “reproductive autonomy” model,
prenatal diagnosis is presented as a means of
giving women information to expand their reproductive
choices.11 Unfortunately, neither model
fully captures the essence of prenatal diagnosis.
In addition, neither acknowledges the internal
tension, revealed in the coexistence of quite
contradictory constructions of testing that may
be equally valid: 1) as an assembly line approach
to the products of conception, separating out
those we wish to discontinue;12 2) as a way to
give women control over their pregnancies,
respecting (increasing) their autonomy to choose
the kinds of children they will bear;13 or 3) as a
means of reassuring women that enhances their
experience of pregnancy. 14
The dominant theme throughout the biomedical
literature, as well as some feminist
commentary, emphasizes the last two of these
constructions.15 A major variation on this theme
suggests, further, that through the use of prenatal
diagnosis women can avoid the family distress
and suffering associated with the unpredicted
birth of babies with genetic disorders or congenital
malformations, thus preventing disability
while enhancing the experience of pregnancy. 16
Not unlike the approach used to justify caesarean
sections, 17 prenatal diagnosis is constructed as a
way of avoiding “disaster.”
The language of control, choice, and reassurance
certainly makes prenatal diagnosis appear
attractive. But while this discourse may be successful
as a marketing strategy,18 it relates a limited
and highly selected story about prenatal diagnosis.
Notwithstanding that even the most critical would
probably agree prenatal diagnosis can be selectively
reassuring19 (for the vast majority of women who will
learn that the fetus does not have Down syndrome or
some other serious diagnosable disorder), this story
alone is too simplistic. It does not take account of
why reassurance is sought, how risk groups are
generated and how eligibility for obtaining this kind
of reassurance is determined. Whatever else, prenatal
diagnosis is a means of separating fetuses we
wish to develop from those we wish to discontinue.
Prenatal diagnosis does approach children as consumer
objects subject to quality control.
This is implicit in the general assumption that
induced abortion will follow the diagnosis of fetal
abnormality. 20 This assumption is reinforced by
the rapid acceptance of CVS, which allows prenatal
diagnosis to be carried out earlier and earlier
in pregnancy when termination of a fetus found to
be “affected” is taken for granted as less problematic.
21 The generally unquestioned assumption that
pre-implantation diagnosis is better than prenatal
diagnosis also undermines a monotonic reassurance
rhetoric.22 With pre-implantation (embryo)
diagnosis, the selection objective is clear: only
those embryos thought to be “normal” will be
transferred and allowed to continue to develop.23
Thus, embryo destruction is equated with induced
abortion.24
•••
B. Constructing the “Need” for
Prenatal Diagnosis
While reassurance has been constructed to justify
health professionals’ offers of prenatal diagnosis,
genetic testing and screening have also
been presented in the same biomedical literature
as responses to the “needs” of pregnant women.
They are seen as something they “choose.” What
does it mean, however, to “need” prenatal diagnosis,
to “choose” to be tested ?25 Once again, a
closer look at what appear to be obvious terms
may illuminate some otherwise hidden aspects of
geneticization and the prenatal diagnosis stories
told in its voice.
We must first identify the concept of need
as itself a problem and acknowledge that needs
do not have intrinsic reality. Rather, needs are
socially constructed and culture bound, grounded
in current history, dependent on context, and,
therefore, not universal.
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Prenatal Genetic Testing and Screening: Constructing Needs and Reinforcing Inequities 385
1
With respect to prenatal diagnosis, “need”
seems to have been conceptualized predominantly
in terms of changes in capabilities for
fetal diagnoses: women only come to “need”
prenatal diagnosis after the test for some disorder
has been developed. Moreover, the disorders
to be sought are chosen exclusively by
geneticists.26 In addition, posing a “need” for
testing to reduce the probability a woman will
give birth to a child with some detectable characteristic
rests on assumptions about the value
of information, about which characteristics are
or are not of value, and about which risks should
or should not be taken. These assumptions
reflect almost exclusively a white, middle-class
perspective.27
This conceptualization of need is propelled by
several features of contemporary childbearing.28
First, given North American culture, where major
responsibility for family health care in general,
for the fetus she carries and for the child she
births, is still allocated to a woman,29 it is generally
assumed that she must do all that is recommended
or available to foster her child’s health.
At its extreme, this represents the pregnant
woman as obligated to produce a healthy child.
Prenatal diagnosis, as it is usually presented, falls
into this category of behaviors recommended
to pregnant women who would exercise their
responsibilities as caregivers. 30 Consequently,
to the extent that she is expected generally to
do everything possible for the fetus/child, a
woman may come to “need” prenatal diagnosis,
and take testing for granted. Moreover, since an
expert usually offers testing, and careseekers are
habituated to follow through with tests ordered
by physicians,31 it is hardly surprising that they
will perceive a need to be tested. 32 With prenatal
diagnosis presented as a “way to avoid birth
defects:’ to refuse testing, or perceive no need for
it, becomes more difficult than to proceed with
it.33 This technology perversely creates a burden
of not doing enough, a burden incurred when the
technology is not used. 34
A second feature, related to the first, is that
women generally, and pregnant women specifi-
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cally, are bombarded with behavioral directives35
that are at least as likely to foster a sense of incompetence
as to nourish a feeling of control.36 •••
Third, prenatal diagnosis will necessarily be
perceived as a “need” in a context, such as ours,
that automatically labels pregnant women thirtyfive
years and over a “high risk” group. 37 •••
Fourth, as prenatal diagnosis becomes more
and more routine for women thirty-five years
and older in North America, the risks it seems to
avoid (the birth of a child with Down syndrome)
appear to be more orninious,38 although the frequency
of Down syndrome has not changed ….
Fifth, on the collective level, prenatal diagnosis
is generally presented as a response to the
public health “need” to reduce unacceptably
high levels of perinatal mortality and morbidity
associated with perceived increases in “genetic”
disorders. This reduction is of a special kind, in
that prenatal diagnosis does not prevent the disease,
as is usually claimed. 39 •••
“Needs” for prenatal diagnosis are being
created simultaneously with refinements and
extensions of testing techniques themselves.40
In popular discourse-and with geneticists generally
silent witnesses-genetic variations are
being increasingly defined not just as problems,
but, I suggest, as problems for which there is,
or will be, a medical/technical solution. With
but slight slippage these “problems” come to
be seen as requiring a medical solution. This
again hides the extent to which even “genetic”
disease is a social/psychological experience as
much as it is a biomedical one.41 This process
is likely to accelerate as gene mapping enlarges
the numbers of individuals declared eligible for
genetic testing and screening. Given the extent
of human variation, the possibilities for constructing
“needs” are enormous.
c. Prenatal Diagnosis and Ille Soclal Control
of Abortion and Pregnancy
The third element in the prenatal discourse that I
will consider here stems from the often told story
that testing is an option that increases women’s
reproductive choices and control. This claim has
386 Reproduction
had much attention in the literature and I will
examine it only with respect to how some features
of prenatal diagnosis do increase control,
but allocate it to someone other than a pregnant
woman herself. This is most apparent in the context
of abortion.42
Without doubt, prenatal diagnosis has (re)
defined the grounds for abortion43-who is justified
in having a pregnancy terminated and
why-and is a clear expression of the social control44
inherent in this most powerful example of
geneticization. Geneticists and their obstetrician
colleagues are deciding which fetuses are healthy,
what healthy means, and who should be born,
thus gaining power over decisions to continue
or terminate pregnancies that pregnant women
themselves may not always be permitted to make.
To the extent that specialists’ knowledge
determines who uses prenatal diagnosis and for
what reasons, geneticists determine conditions
that will be marginalized, objects of treatment,
or grounds for abortion. 45 Prenatal diagnosis is
thus revealed as a biopolitical as well as a biomedical
activity.46 For example, an abortion may
only be “legal” in some countries if the fetus has
some recognized disorder,47 and the justifying
disorder only becomes “recognizable” because
geneticists first decide to screen for it. Fuhrmann
suggests that in Europe, in fact, geneticists
significantly influenced legislators establishing
limits within which abortion would be at all
permissible, by arguing that access to abortion
be maintained through a gestational age that
reflected when results from amniocentesis might
be available.48 One wonders where limits might
have been placed had first trimester chorionic
villus sampling been available before amniocentesis?
Would they have been more restrictive? …
V. CONCLUSION
. . . Prenatal testing and screening . . . are most
often presented as ways to decrease disease,
to spare families the pain of having a disabled
child, and to enhance women’s choice. The bestselling
stories about them speak of reassurance,
choice, and control. As has also been suggested,
this discourse presents a child born with some
disorder requiring medical or surgical care as
(exhibiting) a “failure.”49 This failed pregnancy
theme is reinforced in counseling provided to
these families when counselors emphasize how
most fetuses with an abnormality abort spontaneously
during pregnancy, are “naturally selected,”
as it were, and how prenatal testing is merely an
improvement on nature.
Just as there are several ways to construe
reassurance, choice, and control, the birth of a
child with a structural malformation or other
problem, “genetic” or otherwise, can be presented
in other than biomedical terms. Is the
story claiming that the pregnancy has malfunctioned
(by not spontaneously aborting),50
resulting in a baby with a malformation, any
“truer” than the story suggesting that society has
malfunctioned because it cannot accommodate
the disabled in its midst?51 Social conditions are
as enabling or disabling as biological conditions.
Why are biological variations that create differences
between individuals seen as preventable
or avoidable while social conditions that create
similar distinctions are likely to be perceived as
intractable givens?52
While “many people don’t believe society
has an obligation to adjust to the disabled
individual,”53 there is nothing inherent in malformation
that makes this so. Consequently,
arguing that social changes are “needed” to
enable those with malformations to have rich
lives is not an inherently less appropriate
approach. Actually, it may be more appropriate,
since malformation, a biomedical phenomenon,
requires a social translation to become
a “problem.” Expanding prenatal diagnostic
services may circumvent but will not solve
the “problem” of birth defects; they focus on
disability, not on society’s discriminatory practices.
54 They can, at best, make only a limited
contribution to help women have offspring free
of disabilities, despite recent articles proposing
prenatal diagnosis and abortion as ways to
“improve” infant mortality and morbidity statistics.
55 Thus, as sociopolitical decisions about
the place of genetic testing and screening in the
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Prenatal Genetic Testing and Screening: Constructing Needs and Reinforcing Inequities 387
health care system are made, it will be important
to consider how problems are named and
constructed so that we don’t mistakenly assume
the story told in the loudest voice is the only
one-or that the “best seller” is best.
Unarguably, illness and disability are “hard”
(difficult) issues,56 and no one wants to add to the
unnecessary suffering of any individual. But being
“hard” neither makes illness or disability totally
negative experiences,57 nor does it mean they must
all be eliminated or otherwise managed exclusively
within the m”dical system. Women’s desire
for children without disability warrants complete
public and private support. The question is how to
provide this support in a way that does no harm .. ..
When amniocentesis was introduced, abortion
subsequent to a diagnosis of fetal abnormality was
presented as a temporary necessity until treatment
for the detected condition could be devised.58
Advocates assumed that this would soon be forthcoming.
With time, however, the gap between
characterization and treatment of disease has widened.
59 New information from efforts at gene mapping
will certainly increase the ability to detect,
diagnose, and screen, but not to treat. A human
gene map will identify variations in DNA patterns.
Genes that “cause” specific disease, as well
as those associated with increased susceptibility to
specific disorders, will be found. Simultaneously,
prenatal screening and testing are evolving in
a context where a “genetic approach” to public
health is gaining great favor. 00 All the variations
that will be mapped can become targets of prenatal
testing. Which targets will be selected in the
quest for improved public health? And who will
determine that they have been reached? Given the
extraordinary degree of genetic variability within
groups of people, what does “genetic health” actually
mean-and does it matter? …
Notes
1. In amniocentesis, a holJow needle is inserted
through a woman’s abdomen and into the amniotic
sac in order to remove a small sample of the fluid
that surrounds the developing fetus. The procedure
is usually preceded by an ultrasound examination
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to document the age of the fetus and its location so
that an appropriate site for insertion of the amniocentesis
needle can be chosen. The fluid that is
removed-amniotic fluid–contains cells from the
fetus that, if alJowed to divide in the laboratory,
can then be analyzed. In particular, one can count
the number of chromosomes in the cells, determine
fetal sex and carry out biochemical and specific
genetic analyses on these cells. Amniocentesis is
performed at about sixteen to twenty weeks’ gestation,
the second trimester of pregnancy: before this
time not enough fluid or enough celJs are available.
Once a fluid sample has been obtained, there is a
further three to four week wait for the analyses to
be completed and results to be available, since it
takes this long to grow a sufficient number of celJs
for study. Thus, if a fetus is found to be affected
with the condition for which testing was done and
the woman chooses to abort the pregnancy, the
abortion is not induced until about the twentieth
week, which is halfway through the pregnancy.
See E. Nightingale & M. Goodman, BEFORE BIRTH:
PRENATAL TESTING FOR GENETIC DISEASE 32-35
(1990) [hereinafter BEFORE BIRTH). R,cent technical
developments that allow diagnoses to be made
following amplification of the genetic materials
in a single cell can shorten considerably the time
needed to obtain results. See infra note 4 and
accompanying text.
2. See infra note 37 and accompanying text for a discussion
of the social, rather than biological, bases
for categorizing women over 35 as “at risk.”
3. Over 150 “single gene” disorders can now be
detected, and testing may be carried out for women
who have a documented family history of one
of these or who are otherwise known to be at
increased risk. Testing is not carried out for these
disorders without specific indications. See generally
Antonarakis, Diagnosis of Genetic Disorders
at the DNA Level, 320 NEW ENG. J. MED. 153
(1989) (reviewing recent progress in identifying
single gene disorders).
4. In chorionic villus sampling (CVS), a small tube
(catheter) is inserted through the vagina and cervix.
It is then advanced, under ultrasound guidance,
until it reaches the placenta, from which a small
amount of tissue ( chorionic villi) is removed.
Some obstetricians now obtain a sample through
a needle inserted into the abdomen instead. Any
chromosomal or biochemical disorder can, in
theory, be diagnosed with tissues obtained by CVS,
because the cells of the fetus and placenta (which
are formed from chorionic villi) are genetically the
388 Reproduction
same. See Vekemans & Perry, Cytogenic Analysis
of Chorionic Villi: A Technical Assessment, 72
HUM. GENETICS 307 (1986). This procedure was
first used successfully in China as early as 197 5
to determine fetal sex. Tiet:uag Hosp. Dep’t of
Obstetrics & Gynecology, Fetal Sex Prediction
by Sex Chromatin of Chorionic Villi Cells During
Early Pregnancy, l CHINESE MED. J. 117 (1975).
CVS can be done as early as eight or nine weeks
after a woma.’1.’s last menstrual period and, while
the results of tests carried out on the placental
tissue can be available within hours, a two or three
day waitiBg period is usually required. See BEFORE
BIRTII, supra note 1, at 35-36. If a woman chooses
to abort the pregnancy following CVS, the abortion
can be carried out in the first trimester. Finally,
CVS does not appear more likely to cause a spontaneous
abortion than amniocentesis. Canadian
Collaborative CVS – Amniocentesis Clinical Trial
Group. Multicentre Randomised Clinical Trial of
Chorion Villus Sampling and Amniocentesis, 1
LANCET 1, 4 (1989).
5. During an ultrasound examination, high frequency
sound waves are projected into the uterus; the
sound waves that are reflected back are resolved
visually to allow one to “see” the fetus on a
television-like display screen. A. Oakley, THE
CAPrURED WoMB: A HlsTORY oF TIIE MEDICAL CARE
OF PREGNANT WOMEN 155-68 (1984).
6. See BEFORE BIRTII, supra note l, at 31-32. A
consensus development conference in the United
States recently recommended reserving the use
of ultrasound for pregnancies that may require it
for specific medical reasons. Pua. HEALTH SERv.,
U.S. DEP’T OF HEALrn & HUM. SERvs., CoNSENsus
DEVELOPMEITT CONFERENCE: DIAGNOSTIC ULTRASOUND
IMAGING IN PREGNANCY 11 (National Inst. Of Health
Publications No. 667, 1984). This recommendation
is clearly not being followed and, at present,
in many major North American teaching hospitals,
almost all pregnant women are referred for two
“routine” ultrasound exarninations–0ne before the
twentieth week and one in the third trimester-for
purposes of dating the pregnancy, even though the
benefits of such a policy have not been established.
Even more frequent scans are considered routine
in France. As a specific tool for prenatal diagnosis,
ultrasound can be used to identify certain malformations
such as neural tube defects, cleft lip,
or limb shortening in fetuses known to be at risk
for one of the abnormalities. It can also be used
to identify fetal sex. Most subtle malformations
will not be identified when ultrasound is applied
routinely on a non-diagnostic basis, however;
the detailed examination that would be necessary
requires more than the time that is usually allowed
(or the machinery that is employed) when the primary
goal is pregnancy dating. Neverthe’.ess. some
fetal problems can be diagnosed and their recognition
may influence subsequent decisions about how
pregnancy is managed.
7. See Chervenak, McCullough & Chervenak,
Prenatal Informed Consent for Somogram. 161
AM. J. OBSTETRICS & GYNECOLOGY 857, 860 (1989);
Lippman, Access to Prenatal Screening: Who
Decides? l CANADIAN J. WOMEN L. 434 (1986)
[hereinafter Who Decides?]. Chervenak and colleagues
have recently called attention to the issue
of informed consent for ultrasound, but their conclusions
are troublesome. They consider the pregnant
woman “the patient’s fiduciary,” the “patient”
to them being the fetus. Chervenak, McCullough
& Chervenak, supra, at 858. This suggests that the
consent process they propose will be coercive. It is
also worth noting that ultrasound is no longer the
only genetic technology applied without prior consent.
Screening for carriers of hemoglobin disorders,
for example, is also done unbeknownst to the
individuals being tested in certain jurisdictions. See
Rowley, Loader, Sutera & Walden, Do Pregnant
Women Benefit from Hemoglobinopathy Carrier
Detection? 565 ANNALS N.Y. ACADEMY SCIENCES
152, 153 (1989) [hereinafter Rowley]. These
authors noted that consent for sickle cell and other
hemoglobinopathies was not obtained because:
“Consent for screening was not routinely sought;
providers agreed that obtaining timely informed
consent required counseling approaching that to be
provided to identified carriers and many providers
declined to participate if they had to obtain it.”
Rowley, supra, at 153.
8. See generally Who Decides?, supra note 7, at 434.
9. Id.
10. See, e.g., Kolker, Advances in Prenatal Diagnosis:
Social-psychological and Policy Issues, 5 INT’L
J. TucH. AssESsMFNr HEALTH CARE 601 (1989);
see also Dalgaard & Norby, Autosomol Domi1111nt
Polycystic Kidney Disease in the 1980s, 36
CLINICAL GENETICS 320, 324 (1989) (placing importance
on “selective reproduction prevention”).
11 . See PRESIDENT’S CoMM’N FOR TIIE STUDY OF
ETHICAL PROBLEMS IN MEDICAL AND BIOMEDICAL AND
BEHAVIORAL RESEARCH, SCREENING AND COUNSELING
FOR GENETIC CoNDmONS: TuE ETHICAL, SOCIAL,
AND LEGAL IMPLICATIONS OF GENETIC SCREENING,
COUNSELING, AND EDUCATION PROGRAMS 55 (1983)
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Prenatal Genetic Testing and Screening: Constructing Needs and Reinforcing Inequities 389
[hereinafter PREsmENT’s CoMM’N]. (“In sum, the
fundamental value of genetic screening and counseling
is their ability to enhance the opportunities
for the individual to obtain information about their
personal health and childbearing risks and to make
autonomous and noncoerced choices based on that
information.”)
12. See B. Rothman, REcREATING MOTHERHOOD: IDEOLOGY
AND TECHNOLOGY IN A PATRIARCHAL SOCIETY 21 (1989)
( describing the “cornmoclification of life, towards
treating people and parts of people . . . as commodities
…. We work h(l!d, some of us, at making
the perfect product, whit one of the doctors in the
childbirth movement calls a ‘blue ribbon baby.’ “).
See also Ewing, Australian Perspectives on Embryo
Experimentation: An Update, 3 lssuES REl’RODUCT1VE
& GENETIC ENGINEERING 119 ( 1990); Rothman, The
Decision to Have or Not to Have Amniocentesis
for Prenatal Diagnosis, in CHIIDBIRTII IN AMERICA:
ANTHROPOLOGICAL Pf.RsPECilVES 92, 92-98 (K.
Michelson Ed. 1998) [hereinafter CHII.DBIRTII IN
AMERICA].
13. See Hill, Your Morality or Mine? An Inquiry into
the Ethics of Human Reproduction, 154 AM. I.
OBSTETRICS & GYNECOLOGY 1173, 1178-80 ( 1986).
14. See generally Royal College of Physicians of
London, PRENATAL DIAGNOSIS AND GENETIC SCRF.ENING:
COMMUNITY AND SERVICE IMPuCATIONS (1989).
15. See, e.g., WoMEN’s RJGHTS LITIGATION CLINIC,
REl’RODUCTNE LAWS FOR TIIE 1990s: A BRIEFING
HANDBOOK (1987); Who Decides?, supra note 7,
at 438.
16. McDonough, Congenital Disability and Medical
Research: The Development of Amniocentesis, 16
WoMEN & HEALrn 137, 143-44 (1990). McDonough
notes that three rationales for amniocentesis emerged
from her survey: ‘Toe procedure offered those at
risk the possibility of ‘health’ … [it] provided parents
with reassurance and avoided abortion … [and it]
prevent[ed] disease and disability.” Id.
17. See e.g., McClain, Perceived Risk and Choice of
Childbirth Service, 17 Soc. Sc1. & MED. 1857,
1862 (1983).
18. There is no evidence that control, autonomy, and
reassurance are actually enhanced and not merely
assumed to occur. In fact, there have been very
few in-depth studies in this area, and the conclusions
of these investigations seem to vary with the
orientation of the investigator. Studies reported in
the social science and feminist literature suggest
that prenatal diagnosis removes control; studies
reported in the biomedical literature are interpreted
to show how reassurance is provided. For an
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overview of these studies, see Lippman, Research
Studies in Applied Human Genetics: A Quantitative
Analysis and Critical Review (Biomedical)
Literature, to be published in AM. I. MED. GENETICS
(1991). Much more ethnographic work in this area
is required.
19. See infra text accompanying notes 48-51 [in
original] for a reconstruction of the notion of
reassurance.
20. See supra notes 12-13 and accompanying text.
21. This issue is discussed in A. Lippman, Led Astray
by Genetic Maps (speech given, Ottawa, Canada,
1991). Treatment, often said to be a goal of early
identification of affected fetuses, becomes even
less likely with CVS. Pharmaceutical companies
will not be motivated to invest in developing
treatments for conditions that “need not occur.”
Rarely will they base business decisions on their
social worth rather than on their financial value.
This situation contains elements of an unusual
conflict. Increasingly, geneticists are promising
to have treatments available for a wide range of
disorders and, for some conditions, therapeutic
developments have occurred which make them
far more benign than previously. The promises,
and the available examples, are likely to be sufficiently
persuasive that women “at-risk” may
either make use of prenatal diagnosis less frequently
or see less reason to abort an affected
fetus than today. Yet, at the same time, the very
availability of prenatal diagnosis and abortion
may be seen as justifications for not investing
in the further development of these therapies
that parents will have been led to expect.
Cf Varekamp, Suurmeijer, Brocker-Vriends,
Van Dijck, Smit, Rosendaal & Briet, Carrier
Testing and Prenatal Diagnosis for Hemophilia:
Experiences and Attitudes of 549 Potential and
Obligate Carriers, 37 AM. I. MED. GENETICS
147, 153 (1990) [hereinafter Varekamp] (noting
decrease in hemophilia screening as treatment
capabilities increased).
22. See Bell, Prenatal Diagnosis: Current Status and
Future Trends, in HUMAN GENETIC INFoRMATION:
SCIENCE, LAW & ETI1Ics 1836 (Ciba Foundation
Series 1990). See also Kolker, supra note 10, at
612 (prevention is “clearly cheaper than providing
services for those with genetic disorders”); Modell,
Cystic Fibrosis Screening and Community Genetics,
27 I. MED. GEN. 475, 476 (1990) (“undesirable
[diseases] may be all but eradicated”); Dalgaard &
Norby, supra note 10, at 323-24 (“access to selective
reproductive prevention” is important).
390 Reproduction
23. S. Wymelenberg, SCIENCE AND BABIES: PRIVATE
DECISIONS, PuBuc DILEMMAS 130 (1990).
24. In fact, some consider the combined procedures
of in vitro fertilization and embryo diagnosis to
be “ethically better” than prenatal diagnosis for
detecting problems because it “avoids” abortion. See
Michael & Buckle, Screening for Genetic Disorders:
Therapeutic Abortion and /VF, 16 J. MED. Ennes 43
(1990). But see J. Testart, LE M oNDE DIPLOMATIQUE
24 ( 1990) (suggesting that it is the very need to consider
abortion [“de terribles responsabilites”] that is
perhaps the best safeguard against ordinary eugenics
[“l’ eugenisme ordinaire”]).
25. While those in need are identified explicitly as
(certain) pregnant women, it is worth noting that
clinical geneticists, themselves, have a need for
this technology, too. For instance, when a child is
born with a malformation, geneticists likely feel
most “helpful” when prenatal diagnosis, a technological
palliative for the pains of etiologic ignorance,
can be offered. Saying that the malformation
is not likely to happen again, given the usually
low empiric recUirence risks associated with most
of these problems, is not nearly as comforting for
genetic counselors as is offering in utero detection.
Counselors “need” this technique for the satisfactory
performance of their jobs no less than they
believe a family “needs” prenatal diagnosis to prevent
the birth of a second affected child.
26. See Lippman, Prenatal Diagnosis: Reproductive
Choice? Reproductive Control? [hereiaafter
Reproductive Choice?], in THE FUTURE OF HUMAN
REPRoouCTioN 182, 187 (C. Overall ed. 1989) [hereinafter
THE FUTURE OF HUMAN REPRODUCTION] (consideration
of prenatal diagnosis as a professional resource).
27. See Nsiah-Jefferson, Reproductive Laws, Women
of Color and Low Income Women m REPRODUCT1VE
LAWS FOR THE 1990s 17, 17-58 (S. Cohen & N.
Taub eds. 1988) [hereinafter REPRODUCT1VE LAWS
FOR THE 1990s] ( discussing potential areas of cultural
conflict in genetic counseling).
28. There is an extensive literature on “medicalization”
in general and on the medicalization of
pregnancy and childbirth per se in which this
discussion is rooted and from which it derives
guidance. See, e.g., A. Oakley, supra note 5, at
275. (“The medicalization of everyday life is a
phenomenon described in many radical and liberal
critiques of medicine.”); id at 276 (“For both
birth and death normal signs have become neon
lights flagging risks which demand and validate
medical intervention.”); Raymond, Feminist
Ethics, Ecology, and Vision, in TEST-TUBE WOMEN
427, 427-37 (R. Arditti, R. Klein & S. Minden
eds. 1984) [hereinafter TEST-TUBE WOME.1’1] ; I.
Zola, Healthism and Disabling Medicalization,
in I. Illich, I. Zola, J. McKnight, J. Caplan &
H. Shaiken, DISABLING PROFESSIONS 41 (1977);
Zola, In the Name of Health and Illness: On
Some Socio-Political Consequences of Medical
Influence, 9 Soc. Sa. & MED. 83, 85-87 (1975)
(noting that control by medical value not achieved
through political means but by “medicalization”);
Zola, Medicine as an Institution of Social Control,
20 SOCIOLOGY REv. 487 (1972); see also Lewin,
By Design: Reproductive Strategies and the
Meaning of Motherhood, in SEXUAL PoUTics OR
REPRODUCT10N 123, 123-38 (H. Homans ed. 1985)
[hereinafter THE SEXUAL POLITICS OF REPRODUCTION)
(women “must adapt” to “motherhood” but can
also approach it as “active strategists”).
29. See Oakley, Smoking in Pregnancy: Smokescreen
or Risk Factor? Towards a Materialist Analysis,
11 SOCIOLOGY HEALTH & h.LNESS 311 (1989).
30. See Farrant, supra note 50 [in original], at 96;
Oakley supra note 29, at 311.
31. See R. Hatcher & H. Thompson, SATISFACTION wrrn
OBSTETRICAL CARE AMONG CANADIAN WOMEN (Health
Servs. Res. Unit, Department of Community Health,
Queen’s Univ., Kingston, Ontario 1987) (results of
a survey showing pregnant women’s reluctance to
question medical authority).
32. See Lippman, supra note 26, at 182. Physicians may
pressure women into being tested, even using false
information to do so. Marteau, Kidd, Cook, Michie,
Johnston, Slack & Shaw, Perceived Risk not Actual
Risk Predicts Uptake of Amniocentesis, 96 BRIT. J.
OBSTE’IRICS & GYNAECOLOGY 739 (1989).
33. See Hubbard & Henifin, Genetic Screening
of Prospective Parents and of Workers: Some
Scientific and Social Issues, 15 lNT’L J. HEALTH
SERvs. 231 (1985); Rothman, The Meaning of
Choice in Reproductive Technology, in TEST-TUBE
WOMEN, supra note 28, at 23. I have previously
discussed the “burden” of decisionmaking in
the context of genetic counseling and a similar
“burden” would seem to exist here. See LippmanHand
& Fraser, Genetic Counseling I: Parents’
Perceptions of Uncertainty, 4 AM. J. MED.
GENETICS 51, 5863 (1979) [hereinafter Genetic
Counseling/]; Lippman-Hand & Fraser, Genetic
Counseling II: Making Reproductive Choices,
4 AM. J. MED. GENETICS 73 (1978) [hereinafter
Genetic Counseling II]. This theme is present
in contemporary literature as demonstrated by
Goldstein’s reference to the “momentous decision”
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Prenatal Genetic Testing and Screening: Constructing Needs and Reinforcing Inequities 391
that childbearing now involves. R. Goldstein, THE
MIND-BODY PROBLEM 200 (1983). Hubbard and
Henifin, in fact, identify a “new Catch-22” wherein
participating in a genetic screening program may
lead to a person’s being identified as a “genetic
deviant,” but failure tp participate (or to abort a fetus
diagnosed with a disorder in utero ) may lead to
her being labeled as a ”social deviant.” Hubbard &
Henifin, supra. At 231-48.
34. The degree of this burden is demonstrated by
the frequency with which women queried about
their reasons for having prenatal diagnosis say
that they “had no choice.” Sjogren & Uddenberg,
Decision Making During the Prenatal Procedure,
8 PRENATAL DIAGNOSIS 263 (1988). See Kirejczyk,
A Question of Meaning? Controversies About the
NRT’s in the Netherlands, 3 ISSUES REPRODUCTIVE &
GENETIC ENGINEERING 23 (1990) (individuals often
accept a medical technique because of fear that
they might later regret not having done so); see
also A. Finger, PAST DuE: A STORY OF DISABILITY,
PREGNANCY AND BIRTH (1990); Beck-Gemsheim,
From the Pill to Test-Tube Babies: New Options,
New Pressures in Reproductive Behavior, in
HEALING TECHNOLOGY: FEMINIST PERSPECTIVES 23
(1988) [hereinafter HEALING TECHNOLOGY); Rapp,
Moral Pioneers: Women, Men and Fetuses in a
Frontier of Reproductive Technology, 13 WOMEN
& HEALTH 101 (1987).
35. B. Rothman, supra note 12, at 92-97. Women are
expected to behave in accordance with norms set
up by those in power. See Rodgers, Pregnancy as
Justifications for Loss of Judicial Autonomy, in
THE FUTURE OF HUMAN REPRODUCTION, supra note
26, at 174.
36. See e.g., Fleischer, Ready for Any Sacrifice? Women
in NF Programmes, 3 lssuES REPRODUCTIVE &
GENETIC ENGINEERING 1 ( 1990) (referring to a “code
of good conduct” pregnant women ought to follow);
see also M. De Koninck & F. Saillant, EssAI SUR LA
SANTE DES FEMMES (Conseil du Statut de la femme
1981); A. Queniart, LE CORPS PARADOXAL: REGARDS
DE FEMMES SUR LA MATERNITE (1988); Simkin,
Childbearing in Social Context, 15 WoMEN &
HEALTH 5 ( 1989) ( all discussing the ideology of risk
and behavioral expectations in pregnancy).
37. See Fuhrmann, Impact, Logistics and Prospects
of Traditional Prenatal Diagnosis, 36 CLINICAL
GENETICS 378, 380 (1988). This categoriza-
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tion is more a cultural than biological creation.
See Bourret, Le temps, l’espace en Genetique:
Intervention Medicate et Geographique Sociale du
gene, 6 SCIENCES Soc!ALES ET SANTE 171 (1988);
A. Lippman, The Geneticization of Health and
Illness: hnplications for Social Practice (manuscript
in preparation based on presentation at National
Ass’n for Science, Tech. & Soc’y, Washington,
D.C., Feb. 2, 1991). It reflects prevailing ideas about
the kinds of children women should have and when
the probability for them is or is not diminished. See
Finkelstein, Biomedicine and Technocratic Power,
HASTINGS CFNrER REP. 1990, at 13, 14-16; see also
infra note 43 for a discussion of the role of genetics
in creating these ideas. Age has thus become more
than an event, a birthday; it has been redefined as
a marker, a risk, although nothing inherent in it
makes it so. See Fuhrmann, supra. at 380 (35 is the
crucial age in North America); J. Moatti, J. Lanoe,
C. LeGales, H. Gardent, C. Julian & S. Ayme,
Economic Assessment of Prenatal Diagnosis in
France (unpublished manuscript presented at Joint
Meeting of European Health Economic Societies,
Barcelona, Spain. Sept. 21-23, 1989) (age 38 in
France); Sjogren & Uddenberg, supra note 34, at
263 (age 37 in Sweden). This age marker may even
serve to stigmatize the “older” woman. See Hubbard
& Henifin, supra note 33, at 238 (1985). Further
discussion of the arbitrariness of age 35 as a criterion
for access to prenatal diagnosis can be found in
Who Decides?, supra note 7, at 434; Vekemans &
Lippman, Letter to the Editor: Eligibility Criteria for
Anmiocentesis, 17 AM. J. MED. GF.NETics 531 (1986).
38. This may be an example of what Tversky and
Kahnemann have called the “availability” heuristic.
Tversky & Kahneman, Availability: A Heuristic for
Judging Frequency and Probability, 5 COGNITIVE
PSYCHOLOGY 207 (1973). That is, having become
familiar through constant reference to it and to
prenatal diagnosis, Down syndrome may be perceived
by the general population as “worse” and as
more frequent than it is statistically.
39. See, e.g. Modell, Cystic Fibrosis Screening and
Community Genetics, 27 J. MED. GENETICS 475
(“Cystic fibrosis … is fast becoming preventable
… [because) [t)he gene in which mutation can
lead to CF … has recently been identified …. [This
creates) an imminent need to set up population
screening for CF carriers.”).
40. These techniques are likely to be driven by financial
considerations of the pharmaceutical companies
developing them. See, e.g., D. Nelkin &
L. Tancredi, DANGEROUS DIAGNOSTICS: THE SOCIAL
POWER OF BIOLOGICAL INFORMATION 33-36 (1989);
A. Lippman, supra note 21; cf Note, Patents for
Critical Phannaceuticals: The Azr Case, 17 AM.
J.L. & MED. 145 (1991) (analyzing the validity of
392 Reproduction
pharmaceutical companies’ claims that without a
federally granted monopoly, they would not have the
incentive to research and develop orphan drugs).
41. See Shiloh, Waisbren & Levy, A Psychosocial
Model of a Medical Problem: Maternal PKU,
IO J. PRIMARY PREVENTION 51 (1989).
42. For thorough analyses of the question of women’s
control, see generally Rapp, Chromosomes and
Communication: The Discourse of Genetic
Counseling. 2 MED. ANTHROPOLOGY Q. 143 (1988).
43. In fact, the availability of amniocentesis “influenced
legislation so that the upper limit of gestational
age for legally tolerated termination of
pregnancy was adjusted to the requirements of
second trimester prenatal diagnosis in several countries.”
Fuhrmann, supra note 37, at 378. Evidently,
geneticists can accomplish what women’s groups
cannot: a revisioning of abortion.
44. The term “social control” is used in accord with
its original use to embrace “the widest range of
influence and regulation imposed by society upon
the individual.” D. Gordon, Clinical Science and
Clinical Expertise: Changing Boundaries Between
Art and Science in Medicine, in BIOMEDICINE
EXAMINED 257 (M. Lock & D. Gordon eds. 1988).
45. Reproductive Choice? supra note 26, at 187-192.
46. Finkelstein, Biomedicine and Technocratic Power,
HASTINGS CENTER REP. 1990, at 14-16.
47. Fetal abnormality as grounds for abortion is of
fairly recent vintage, having first become “legal” in
the United States in 1967 in response to a rubella
epidemic. The Canadian Medi.cal Association gave
its approval the same year. Beck, Eugenic Abortion:
An Ethical Critique, 143 CANADIAN MED. Ass’N J.
181, 181-84 (1990). Today, members of the general
population as well as physicians regularly and
strongly agree that fetal abnonnality is a justification
for abortion. See Annas, The Supreme Court,
Privacy and Abortion, 321 NEW ENG. J. MED. 1200
(1989); Breslau, Abortion of Defective Fetuses:
Attitudes of Mothers of Congenitally Impaired
Children, 49 J. MARRIAGE FAMILY 839 (1987);
Varekamp, supra note 21, at 147.
48. See Fuhrmann, supra note 37, at 383-84. A recent
example of the use of genetics to set social policy
in this area is the position taken by the American
Society of Human Genetics with respect to possible
restricti.ons on abortion under consideration
in various parts of the United States. This professional
group has proposed as model legislation
that any pregnant female whose pregnancy has not
reached the point of viability and who has been
informed by a licensed or certified health care
professional that her fetus (or fetuses) is/are likely
to have a serious genetic or congenital disorder
shall have the right, among other options, to
choose to terminate her pregnancy. This right
shall extend to situations where the female is at
significantly increased risk for bearing a child with
a serious disorder for which precise prenatal diagnosis
is not available. Letter from Phillip J. Riley
to the author. The merits for/against this position
aside, it certainly demonstrates how geneticists
seek to influence the resolution of fundamentally
political, legal (and ethical) problems.
49. Dunstan, Screening for Fetal and Genetic
Abnormality: Social and Ethical Issues, 25 J. MED.
GENETICS 290 (1988).
50. Dunstan thus sees genetic screening and “selective
abortion” as a “rationalized adjunct to natural processes”
in which “defective products” (babies) are
“discard[ed] spontaneously.” Id. at 292.
51. For a full development of these ideas, see Asch,
Reproductive Technology and Disability, in
REPRODUCTIVE LAWS FOR THE 1990s, supra note
27, at 69; Asch & Fine, Shared Dreams: A Left
Perspective on Disability Rights and Reproductive
Rights, in WOMEN WITII DISABILITIES 197 (M. Fine &
A. Asch eds. 1988).
52. There would seem to be similar assumptions
beneath the transformation of problems with
dirty workplaces into problems with women
workers who may become pregnant. See, e.g.,
Bertin, Women’s Health and Women’s Rights:
Reproductive Health Hazards in the Workplace, in
HEALING TECHNOLOGY, supra note 34, at 289, 297
(advocating legislation requiring safe workplaces
and prohibiting sterility requirements); Woolhandler
& Himmelstein, Ideology in Medical Science: Class
in the Cliinic, 28 Soc. Sci. & MED. 1205 (1989).
53. Levin, International Perspectives on Treatment
Choice in Neonatal Intensive Care Units, 30 Soc.
Sci. & MED. 901, 903 (1990) (citation omitted).
54. For a further discussion on this, see McDonough,
supra note 16, at 149.
55. Powell-Griner & Woolbright, Trends in Infant
Deaths from Congenital Anomalies: Results from
England and Wales, Scotland, Sweden and the
United States, 19 INT’L. I. EPIDEMIOLOGY 391, 397
(1990) (probable that level of infant mortality will
be influenced by prenatal screening and selective
abortion); Saari-Kemppainen, Karjalainen, Ylostalo
& Heinonen, Ultrasound Screening and Prenatal
Mortality: Controlled Trial of Systematic OneStage
Screening in Pregnancy, 336 LANCET 387,
391 ( 1990) (Researchers of ultrasound screening
in Helsinki, Finland concluded that “[t]he decrease
in perinatal mortality of about half in this trial can
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be explained mainly by the detection of major fetal
anomalies by ultrasound screening and the subsequent
termination of these pregnancies.”).
56. Lippman, Genetics and Public Health: Means,
Goals and Justices, to be published in AM. J. HuM.
GENETICS (1991). See A. Finger, supra note 34;
P. Kaufert, The Production of Medical Knowledge:
Genes, Embryos and Public Policy (paper presented
at Gender, Science and Medicine /l conference,
Toronto, Ontario, Nov. 2, 1990). Moreover,
illness and disability are hard (i.e., difficult) issues
partly because society defines them as such, in its
decisions about how (not) to allocate resources
to deal with them. Unfortunately, since resources
are always “scarce,” the programs or projects that
do (not) get supported will merely be those which
policymakers choose (not) to fund. No specific
Deciding Against Disability 393
choice is inherent in the limited budgets available,
although the requirement that choices be made
is. In choosing how to deal with health problems,
budget limitations may sometimes be secondary to
limitations in our visions about what to do. And,
in choosing how to approach (even) “hard” issues,
genetic prevention is but one possibility.
57. Asch, Reproductive Technology and Disability,
supra note 51, at 70.
58. See Friedmann, Opinion: the Human Genome
Project-Some Implications of Extensive “Reverse
Genetic” Medicine, 46 AM. J. HUM. GENETICS 407,
412 (1990).
59. Id. at 41 l.
60. Lippman, Messing & Mayer, Is Genome mapping
the Way to Improve Canadians’ Health?
81 CANADIAN J. PuB. HEALTH 397 (1990).
Deciding Against Disability: Does the Use of
Reproductive Genetic Technologies Express
Dis value for People with Disabilities?
Janet Malek
INTRODUCTION
The increasing range of assisted reproductive
and genetic technologies offers potential parents
unprecedented control over the characteristics of
their future children. A couple can use spermsorting
technology to significantly increase the
likelihood that they will conceive a girl in order
to avoid having a child affected by haemophilia.
A woman who carries the dominant gene for
Huntington’s disease can use in vitro fertilisation
and preimplantation genetic diagnosis (PGD) to
ensure that she will not pass the gene on to her offspring
by transferring back only embryos that do
not carry that gene. Potential parents can use chorionic
villus sampling to determine whether their
I I-week-old fetus has trisomy 18. At present,
such reproductive genetic technologies (RGTs)
are used primarily to select against certain traits;
that is, they are used to prevent future children
from having particular genetic conditions.
An array of ethical concerns has been raised
about the use of these technologies. Some scholars
have worried whether these technologies are safe
for women and for the children they produce.
Some have argued that such technologies are
unnatural and that they may produce unintended
consequences. Others have suggested that the
routine use of RGTs could lead to diminished
support for those with disability or that condoning
such use will lead to a revival of Nazi-like eugenic
programmes. This paper will focus on just one
of the many objections to the use of RGTs: the
argument known as the expressivist objection.
According to this argument, selecting against
embryos or fetuses with conditions that will lead
Reproduced from Journal of Medical Ethics, Malek, J. “Deciding against disability: does the use of reproductive
genetic technologies express disvalue for people with disabilities?”, Vol. 36 Issue 4, pp. 217-221. © 2010
with permission from BMJ Publishing Group Ltd.
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