Special Supplement: The Disability Rights Critique of Prenatal Genetic Testing Reflections and
Recommendations
Author(s): Erik Parens and Adrienne Asch
Reviewed work(s):
Source: The Hastings Center Report, Vol. 29, No. 5 (Sep. - Oct., 1999), pp. S1-S22
Published by: The Hastings Center
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The
Disability
of
Prenatal
Rights
Genetic
Reflections
A SPECIAL
Critique
Testing
and Recommendations
SUPPLEMENT
to the
HASTINGS
CENTER
September-October
REPORT
1999
Acknowledgments
The Disability Rights Critique
of Prenatal Genetic Testing
Reflections
and Recommendations
by ERIK PARENS, Ph.D. (The Hastings Center)
and ADRIENNE
ASCH,
in consultation with
Ph.D. (Wellesley College)
MaryAnn Baily,Ph.D.
GeorgeWashingtonUniversity
Washington,D.C.
JamesLindemannNelson, Ph.D.
Universityof Tennessee
Knoxville,Tenn.
Diana Bianchi,M.D.
New EnglandMedicalCenter
Boston,Mass.
PilarOssorio,J.D., Ph.D.
AmericanMedicalAssociation
EthicsInstitute
Chicago,Ill.
BarbaraBowlesBiesecker,M.S.
NationalHumanGenome
ResearchInstitute,NIH
Bethesda,Md.
CynthiaPowell,M.D.
Universityof North Carolina
ChapelHill, N.C.
Salt Lake City, Utah
Nancy Press,Ph.D.
OregonHealthSciencesUniversity
Portland,Ore.
Bette-JaneCrigger,Ph.D.
The HastingsCenter
Garrison,N.Y.
M.S.
Diana Puniales-Morejon,
Beth IsraelMedicalCenter
New York,N.Y.
Diane Dreher,M.A.
AdjunctAssociatefor Education
The HastingsCenter
Philip Ferguson,Ph.D.
Universityof Oregon
Eugene,Ore.
Alan Gartner,Ph.D.
GraduateSchool& University
Center,CUNY
New York,N.Y.
StevenRalston,M.D.
New EnglandMedicalCenter
Boston,Mass.
JeffreyBotkin, M.D.
Universityof Utah
EvaFederKittay,Ph.D.
SUNY Stonybrook
Stonybrook,N.Y.
Dorothy KerznerLipsky,Ph.D.
NationalCenteron Educational
and Inclusion
Restructuring
New York,N.Y.
BruceJennings,M.A.
The HastingsCenter
Garrison,N.Y.
William Ruddick,Ph.D.
New YorkUniversity
New York,N.Y
MarshaSaxton,Ph.D.
WorldInstituteon Disability
Oakland,Calif.
Bonnie Steinbock,Ph.D.
Universityat Albany,SUNY
Albany,N.Y.
DorothyWertz,Ph.D.
EuniceKennedyShriverCenter
Waltham,Mass.
BenjaminWilfond, M.D.
NationalHumanGenome
ResearchInstitute,NIH
Bethesda,Md.
Thomas H. Murray,Ph.D.
The HastingsCenter
Garrison,N.Y.
September-October
When I firstthought to put together a project to examine the disability
rightscritiqueof prenatalgenetic testing, EricJuengstwas chief of the Ethical, Social, and Legal Implicationsof
the Human Genome Project (ELSI)
section of what then was called the
National Center for Human Genome
Research.I am deeply gratefulto Eric
for his support of that idea-and
even more for urging me to contact
Adrienne Asch. Adrienne is not only
coauthor of this document, but was
centrally involved in every phase of
the project.The workinggroup members listed on this page also lavishly
gave insight, energy, and time to the
project and document. I am also indebted to Greg Kaebnick, associate
editor of the Hastings CenterReport,
and Bette Crigger, editor of the Report, for their insight, patience, and
care.Their work made our document
more cogent and accessible.Everyone
should be so lucky as to have such
colleagues.
Thanks also to the Reportsart director Amy Menasche and administrativeassistantMaryAnneDahlia for
their crucial contributions to bringing this into print. Our librarianChris
McKee and research assistant Rita
Strobel-and theirpredecessors,Marna
Howarth and Eve DeVaro-provided
invaluableresearchsupport. Without
the administrativeand support work
of Jodi Fernandes,Nicole Rozanski,
Mary GracePagaduan,and MaryAnn
Hasbrouck, our research meetings
would not have been as productive
and pleasantas they were.
Last and surelynot least, thanks to
the National Institutes of Health for
supportingour project (throughgrant
RO 1 HG01168-02) and to Elizabeth
Thomson, current chief at ELSI, for
shepherding our project from grant
applicationthroughto completion.
-Erik Parens
PrincipalInvestigator
1999/HASTINGS
CENTER
REPORT
The
Critique
Disability Rights
Genetic
Prenatal
Testing
Reflections and Recommendations
he internationalproject to sequence the human genome
was undertakenin the expectation that knowing the sequencewill
offer new ways to understand and
treat disease and disability. If researcherscan identify the sequencesof
genes that code for the body'sbuilding
blocks, then, it is hoped, they can
identify and correctthe sequencesassociatedwith diseaseand disability.
So far, researchershave enjoyed
only minimal success in using gene
therapy to correct such conditions,
and no researcher has yet even attempted to use gene therapy to correct genetic impairments in a fetus.
Rather,the discoveryof abnormalor
incorrectsequences has led primarily
to the development of genetic tests
that can revealwhether a person, embryo, or (in the usual case) a fetus
carriesan abnormalityor "mutation"
associatedwith diseaseor disability.It
is now possible to test for gene mutations associatedwith some 400 conditions, from those universallyviewed
as severe,such as Tay Sachs, to those
that many might describeas relatively
minor, such as polydactyly (a trait
involving an extra little finger). The
number and varietyof conditions for
which tests are availablegrows almost
daily.'
Today we test for one trait at a
time. In the future,however,with advances in biochip technology, it will
Erik Parensand AdrienneAsch, "The Disability Rights Critique of PrenatalTesting:Reflections and Recommendations,"SpecialSupplement, HastingsCenterReport29, no. 5 (1999):
S1-S22.
SPECIAL
SUPPLEMENT/The
be possible to test simultaneouslyfor
as many traits as one would like. In
principle, we will be able to test for
any traitwe wish that has been associated with any given allele. Not only
will the cost of such testing likely decreaseas the diagnostictechnologyadvances, but advancesin the technology will make it possibleto do the testing earlierin the pregnancy.One such
technology will isolate the very small
number of fetal cells that circulatein
the maternal blood. Insofar as these
earliertests will be performedon fetal
cells obtained from the mother's
blood (ratherthan from the amniotic
sac or chorionic villi) they will be
noninvasive.Thus it will be possible
to do many more tests, at once, and
with less cost to the pregnantwoman
in time, inconvenience,risk,or dollars,
than is now the case.2
As the ease of testing increases,so
does the perception within both the
medical and broader communities
that prenataltesting is a logical extension of good prenatalcare:the idea is
that prenataltesting helps prospective
parents have healthy babies. On the
one hand, this perceptionis quite reasonable.Though no researcherhas yet
even attempted to correct a genetic
impairmentwith in-utero gene therapy, increasinglythere are nongenetic
approachesto such impairments.At
the time of this writing, more than
fifty fetuses have undergone in-utero
surgeryto repairneural tube impairments (myleomeningoceles).3Moreover, negative (or reassuring)prenatal
test resultswill reducethe anxietyfelt
by many prospectiveparents,and this
of
in itself can be construed as part of
good prenatal care. On the other
hand, as long as in-uterointerventions
remain relativelyrare, and as long as
the numberof people seekingprenatal
genetic informationto preparefor the
birth of a child with a disability remains small, prospectiveparentswill
use positive prenatal test results primarily as the basis of a decision to
abort fetuses that carrymutations associatedwith diseaseand/or disability.
Thus there is a sense in which prenatal testing is not simply a logical extension of the idea of good prenatal
care.
Logicalextension or no, using prenatal tests to prevent the birth of babies with disabilitiesseems to be selfevidentlygood to many people. Even
if the testing will not help bring a
healthybabyto term this time, it gives
prospective parents a chance to try
again to conceive.To others,however,
prenataltesting looks ratherdifferent.
If one thinks for even a moment
about the historyof our society'streatment of people with disabilities,it is
not difficult to appreciatewhy people
identified with the disability rights
movement might regardsuch testing
as dangerous.For the membersof this
movement,includingpeople with and
without disabilities and both issuefocused and disability-focusedgroups,
livingwith disablingtraitsneed not be
detrimental either to an individual's
prospectsof leading a worthwhilelife,
or to the families in which they grow
up, or to societyat large.Although the
movement has no one position on
prenataldiagnosis,many adherentsof
Disability Rights Critique of Prenatal Genetic Testing
S1
the disabilityrightsmovement believe
that public support for prenataldiagnosis and abortion based on disability
contravenesthe movement'sbasicphilosophy and goals. Critics contend
that:
1) Continuing, persistent,pervasive discriminationconstitutesthe
majorproblemof havinga disability for people themselvesand for
their families and communities.
Ratherthan improvingthe medical
or socialsituationof today'sor tomorrow'sdisabledcitizens,prenatal
diagnosis reinforces the medical
model that disabilityitself,not societaldiscriminationagainstpeople
with disabilities,is the problemto
be solved.
2) In rejectingan otherwisedesired
child becausethey believethat the
child'sdisabilitywill diminishtheir
parentalexperience,parentssuggest
that they are unwilling to accept
any significantdeparturefrom the
parentaldreamsthat a child'scharacteristicsmightoccasion.
3) When prospectiveparentsselect
againsta fetusbecauseof predicted
disability,they are makingan unfortunate,often misinformeddecision that a disabledchild will not
fulfill what most people seek in
child rearing,namely,"togive ourselvesto a new beingwho startsout
with the bestwe can give,and who
will enrichus, gladdenothers,contributeto the world, and make us
proud."4
This document, the product of two
yearsof discussionsby a diversegroup
drawn from within and outside the
disabilityrights movement, reshuffles
what is contained in these criticisms
and discerns in them two broad
claims: simply put, that prenatal genetic testing followed by selective
abortion is morally problematic and
that it is driven by misinformation.
The document elaboratesand evaluates these two claims, turns to explore
the prospects for distinguishing beS2
tween acceptable and unacceptable
testing, and drawsout of the ongoing
debate that it seeks to focus-not to
put to rest-recommendations to
guide professionalprovidersof genetic
testing through this difficultterrain.
and Evaluating
Understanding
the Disability Rights Critique
Prenatal Testing Is Morally Problematic. The disability critique
holds that selectiveabortionafterprenataldiagnosisis morallyproblematic,
and for two reasons. First, selective
abortionexpressesnegativeor discriminatory attitudes not merely about a
disabling trait, but about those who
carryit. Second, it signals an intolerance of diversitynot merelyin the society but in the family,and ultimately
it could harm parental attitudes towardchildren.
The arTheExpressivistArgument.
gument that selective abortion expresses discriminatory attitudes has
been called the expressivist
argument.5
Its central claim is that prenataltests
to select againstdisablingtraitsexpress
a hurtful attitude about and send a
hurtful message to people who live
with those same traits. In the late
1980s, AdrienneAsch put the concern
this way: "Do not disparagethe lives
of existing and future disabledpeople
by tryingto screenfor and preventthe
birth of babies with their characteristics."6More recently,she has clarified
what the hurtful or disparagingmessage is:
As with discrimination
moregenerwith
ally,
prenataldiagnosis,a sinstands
in for the whole,the
trait
gle
trait obliteratesthe whole. With
both discriminationand prenatal
diagnosis,nobody finds out about
the rest.The testssend the message
that there'sno need to find out
aboutthe rest.7
reinforcesthat same tendency toward
letting the partstand in for the whole.
Prenataltesting seems to be more of
the discriminatorysame:a single trait
stands in for the whole (potential)
person. Knowledgeof the single trait
is enough to warrantthe abortion of
an otherwisewanted fetus. On Asch's
more recent formulation, the test
sends the hurtful messagethat people
are reducibleto a single, perceived-tobe-undesirabletrait.
This observationabout letting the
part stand in for the whole is surely
enormously important. In everyday
life, traits do often stand in for the
whole, people do get looked past because of them. Indeed, one form of
the expressivistargumenthas been regarded ratherhighly in another context. Many people who are concerned
to support women's rights, have argued that prenatal sex selection is
morally problematic because it embodies and reinforcesdiscriminatory
attitudes toward women.8 The sex
traitis allowedto obliteratethe whole,
as if the parents were saying, "We
don'twant to find out about 'the rest'
of this fetus;we don'twant a girl."
MarshaSaxton has put the expressivist argumentthis way:
The messageat the heartof widespread selective abortion on the
basis of prenataldiagnosis is the
greatestinsult:some of us are"too
flawed"in our very DNA to exist;
we areunworthyof beingborn....
[F]ightingfor this issue, our right
and worthinessto be born, is the
fundamentalchallengeto disability
oppression;it underpinsour most
basic claim to justice and equality-we areindeedworthyof being
born,worth the help and expense,
and we know it!9
And as Nancy Press has argued, by
developingand offeringtests to detect
some characteristicsand not others,
Indeed, many people with disabilities, the professional community is exwho daily experiencebeing seen past pressingthe view that some characterbecauseof some single trait they bear, istics, but not all, warrantthe attenworrythat prenataltesting repeatsand tion of prospectiveparents.10
September-October
1999/HASTINGS
CENTER
REPORT
For severalreasons,however,there question the morality of virtuallyall because it was the fourth child. The
is disagreementabout the merit of the abortions. The argument presumes trait of being fourth-bornmakes the
expressivistargumentas a basisfor any thatwe can distinguishbetweenabort- prospectiveparentsignore everyother
fetus respectin which that fetus could bepublic policy regardingprenataldiag- ing "any"fetus and a "particular"
nosis of disability.Individualwomen that has a disability-what Adrienne come a child that would be a blessing
and families have a host of motives Asch has called the any-particulardis- to its family and community.Nelson's
and reasonsfor seekingout genetic in- tinction. According to Asch, most example of the potential fourth-born
formation, and as James Lindemann abortions reflect a decision not to child suggestsone reasonto doubt the
Nelson and Eva FederKittayargue,it bring any fetus to term at this time; merit of the any-particular
distinction;
is impossible to conclude
just what "message" is
who daily experience
Mai ny people with disabilities,
being sent by any one
being
decision to obtain prena-s
of some single trait they bear, worry
see n past because
tal testing.1'Acts (and the
and reinforces
that same
thai t prenatal
messages they convey)
repeats
testing
rarelyhave either a single
letting the part stand in for the whole.
ten dency toward
motivation or meaning.
Some prospectiveparents no doubt have wholly negativeattitudestowardwhat they selective abortions involve a decision he thinksthat the disabilitycriticshave
imagine a life with a disabilitywould not to bring this particularfetus to failed to explainwhy traitslike being
be like for them and theirchild;others term because of its traits. Prochoice fourth-borncould be a legitimatebasis
may believe that life could be rich for individuals within and outside the for an abortion while disabling traits
the child, but suspect that their own disability community agree that it is could not.
A third criticismof the expressivist
lives would be compromised. Others morally defensible for a woman to
who have disabilitiesperhapssee pass- decide, for example, that she doesn't argumentis that it presumesthat selecing on their disabling trait as passing want any child at a given time because tive abortionbasedon prenataltesting
on a partof life that for them has been she thinks she's too young to mother is morally problematicin a way that
negative. Parentsof one child with a well, or because it would thwart her other means of preventing disability
disability may believe that they don't life plan, or because she has all the arenot. Such other meansinclude, for
have the emotional or financial re- childrenshe wants to raise.The ques- example, taking folic acid to reduce
sourcesfor another.The point is that tion is whetherthat decision is moral- the likelihood of spina bifida, or esthe meaning of prenatal testing for ly differentfrom a decisionto abortan chewing medication that is known to
stunt the growthor harmthe organsor
would-be parentsis not clearor singu- otherwise-wantedfetus.
But it is not clear that the distinc- limbs of a developingfetus. Such acts
lar. In any case, those sympatheticto
at least some forms of prenataltesting tion is adequate.Sometimes the deci- (or refrainingfrom such acts) on the
point out that prospectiveparentsdo sion to abort "any"fetus can be recast part of the pregnantwoman are denot decide about testing to hurt exist- as a decision to abort a "particular" signed to protectthe health of the deing disabledpeople but to implement fetus. James Lindemann Nelson, for velopingfetus.
their own familialgoals. In that sense, example,arguesthat if parentsof three
Disability critics hold, however,
there is no "message"being sent at all. childrenchose to end a pregnancythat that abortion does not protect the
To many in the disability rights would have produced a fourth child, developingfetus from anything.It premovement, however,regardlessof the such parentswould not be making a vents disabilityby simply killing the
parentalmotive to avoid the birth of a statementabout the worthwhilenessof fetus. Proponentsof this disabilitycrichild who will have a disability,the other families with four children, or tique hold a strong prochoice posiparentmay still be letting a part stand about the worth of fourth-bornchil- tion. Their objection is only to a cerin for the whole. That prospective dren as human beings.'2Rather,they tain way of using abortion.
But those from the mainstream
parentsdo not intend to send a hurt- would be deciding what would be
ful messagedoes not speak to the fact right for their particularsituation. If, prochoice community think of selecthat many people with disabilitiesre- as Asch and othershaveargued,prena- tive abortion in differentterms.They
ceive such a message and are pained tal testingis morallysuspectbecauseit do not see an importantmoral differlets a trait stand in for the whole po- ence between selective abortion and
by it.
A second criticism of the expres- tentialperson,preciselythe same argu- other modes of preventing disability
sivist argument is that it calls into ment would apply to abortinga fetus in large part because they do see an
SPECIAL
SUPPLEMENT/The
Disability Rights Critique of Prenatal Genetic Testing
S3
The Project:
A Two-Year and Ongoing
Against a backgroundof burgeoning medical discovery, rising consciousness of discrimination
againstpeople with disabilities,increasingattention to
the disabilitycritiqueof prenataltesting, and the societal debate about abortion,The Hastings Center undertooka two-yearprojectthat sought to createa sustained dialogue yielding both intellectualand policy
benefit. The projectwas supportedby a grant (RO1
HG01168-02) from the Ethical,Legal,and SocialImplicationssection of the National Institutefor Human
Genome Research.
Not only has the widespreadpopularsupportof genetic testing largely failed to attend to the disability
community'schargethat such testingis discriminatory,
but the disability community'scritique has not met
with sustained,respectful,but criticalexaminationby
the bioethicsor medicalcommunities.'In this project,
we sought to ascertainwhethera full discussionof the
disabilitycritiqueof genetic testing would substantially alter or be alteredby the views of others, and we
stroveto find a frameworkto which all partiesto this
conversation could subscribe in distinguishing between acceptableand unacceptabletesting.That is, we
strove to find a way to distinguishbetween traits for
which testing would and would not be appropriate,
upon which genetics professionals,bioethicists, and
membersof the disabilityrightsmovementcould agree.
The disabilitycritiqueseeksto persuadeprospective
parentsto examinethe meaningof testing-the meaning of their and society'scumulativeactions.Although
many of those who voice this critiquethemselveslive
with disabilitiesor have close relationshipswith disabled people, many thoughtful people whose experience is differentarealsopersuadedby those arguments.
The critique is made to persuadeprospectiveparents
important moral distinction between
a born child with a disablingtrait and
an embryo or fetus with a disabling
trait. They argue that parents of all
born children have an obligation to
love and care for those children-regardlessof theirtraits.They also argue,
however, that the pregnant woman
be(and her partner)arenot "parents"
fore the child is born. Just as a woman
or couple may decide during the first
two trimestersof any pregnancythat
becoming a parent to a first child, or
to any child, is not in accord with
their life plans, so may they make the
S4
Discussion
and medical professionalsto re-examine stereotypes
about life with disabilityand about what it means to
be the parentof a child with a disability.Proponentsof
this critique seek to help professionalswho develop
and provide tests-and prospectiveparents who use
tests-understand and criticize the assumptionsthat
underlietesting.The argumentsare intended to bring
out the beliefsthat testing assumes,in hopes that people will be persuadedto changethesebeliefsand decide
on theirown that they need neitherto urgetestsnor to
use them.
Our group sought to understandboth the logical
moves made in the argumentsfrom a disabilityperspectiveas well as the social and psychologicalcontext
in which those argumentsare made. Not only did we
try to understandthe logical moves and feelings of
people in the disabilitycommunity,but we also tried
to understandthe moves and feelingsof the people in
the majoritycommunity of the "temporarilyabled."
No one in our group can any longer imagine havinga
view from nowhere.Those of us with disabilitiesappreciatethat our particularexperienceof discrimination colorsour critiqueof prenataltesting.Those of us
who used prenataltesting beforeor during the project
appreciatethat this experiencecolors our responsesto
those critiques.Not surprisingly,those of us who are
parentssometimesfound ourselvesjustifyingour own
parentalattitudes. Those of us who are not parents
sometimes asked ourselveswhether becoming parents
might make us think differentlyabout what constitutes an admirableparentalattitude.
Though we came to the tablewith differentexperiences of both disabilityand parenting,we also came
with a desire to think through a set of public policy
questionsabout how best to managean emergingtech-
same decision on the groundsthat the
fetus has disablingtraits.The woman
may terminatethe pregnancyand try
againto become pregnantwith a fetus
that has not been identified as carrying a disabling trait. On this view, if
it is reasonable to prevent disability
in a developing child by adhering to
a particularlifestyle, taking specified
medicationsor refrainingfrom taking
others, it is equally acceptableto opt
for abortion to preventthe birth of a
child with a significantdisability."3
Even if expressivistargumentswill
not dissuadeall peoplefrom usingtests
September-October
in making reproductivedecisions for
their own lives, policies that would in
any way penalizethose who continue
pregnanciesin spite of knowing that
their child will live with a disabling
trait must be avoided.Those prospective parentswho either forgo prenatal
testing or decide that they want to
continue a pregnancydespite the detection of a disablingtrait should not
have to contend with losing medical
servicesor benefitsfor their child, nor
feel obliged to justify their decisions.
Further, the availability of prenatal
testing in no way reducesour societal
1999 / HASTINGS
CENTER
REPORT
nology.We came with a desireto hear each other and
to identify both those issues on which we could agree
and those on which we could not. The group included
people who live with and people who theorizeabout
disabilities,scholarsfrom the social sciences and humanities,medicalgeneticists,geneticcounselors,physicians, and lawyers.
Over the course of our two-yearproject, we held
five, two-day researchmeetings at The Hastings Center.The first four were devoted to paperpresentations
and discussion. A collection of essaysbased on those
presentationswill be publishedby GeorgetownUniversity Pressin mid 2000.2The lastof our meetingswas to
discussthe first draftof this summaryof our deliberations. Between meetingswe engagedin a lively group
e-mail conversation.In addition,througha grantfrom
the National Institutefor Disabilityand Rehabilitation
Researchto the Societyfor DisabilityStudies,our project membersgatheredwith membersof the Societyat
its May 1997 meetingin Minneapolis.Fourconference
sessionswere devoted to discussingthe project'swork
in dialoguewith many people who live with and study
disabilityissues.This dialogue broadenedour group's
conversationby providingaccess to ideas from other
interestedand knowledgeablepeople. It also provided
some members of the researchgroup with their first
contact-in a non-medicalsetting-with people who
havedisabilities.
Given the controversialnature of the subject and
the diversityof our workinggroup, it is not surprising
that we could not reach consensus about all of the
questions we took up. We did not reach consensus
about what weight to give or how best to use the disability arguments about prenatal genetic testing in
making public policy. We did not achieve unanimity
on the majorclaimsof the disabilityperspective-most
obligations to those people who are
born with or acquiredisabilities.Even
if prenataldiagnosissaysnothing to or
about existing or future disabledpeople, we should as a society vigorously
enforce antidiscrimination laws and
improveservicesand supportsfor disabledpeople and their families.
The Parental Attitude Argument.
The second argument that prenatal
testing is morallyproblematicwe call
the parental attitude argument. According to it, using prenatal tests to
select against some traits indicates a
problematicconceptionof and attitude
SPECIAL
SUPPLEMENT/The
generally,that prenatal diagnosis is based on either
morallyproblematicviews about people with disabilities or on misinformationabout the natureand consequences of disability.Critics continued to believe that
as it now is practiced,prenataltestingreflectsand reinforces the belief that a disability differs from and is
worse than other attributesthat a child might have. In
their view the current practice constitutes a form of
invidiousdiscrimination.Supportersof prenataltesting
continued to believe that it is one more method of
helping prospectiveparentsavoid problemsfor themselvesand their children,much as other forms of prenatalcareand health promotionseek to avoid the consequencesof illnessor disability.
Nor did we concur more specificallyabout whether
it is good public policy to draw lines between reasonable and unreasonabletests. Nonetheless, our project
has achievedtwo importantaims. First,we servedthe
public purposeof airingand taking seriouslythe concerns of the disabilitycommunity. Second, to the extent that we found merit in the claims made by scholars with that view, we have made recommendations
about how to amelioratesome of the problemsassociated with the customaryways of providing prenatal
testing. This document presentsan account of what
happened in our project-what we agreed and disagreedabout and why.
References
1. Though not devoted exclusively to the disability critique,
an importantantecedentof our work is Womenand Prenatal
ed. KarenH.
of GeneticTechnology,
Facingthe Challenges
Testing:
Rothenbergand ElizabethJ. Thomson (Columbus:Ohio State
UniversityPress,1994).
2. ErikParensandAdrienneAsch,eds., PrenatalGeneticTesting and theDisabilityCritique(Washington,D.C.: Georgetown
UniversityPress,forthcoming).
toward parenthood. Part of the argument is that prenataltesting is rooted
in a "fantasyand fallacy"that "parents
can guarantee or create perfection"
for their children.14If parentswere to
understand what they really should
seek in parenting,then they would see
how relatively unimportant are the
particulartraitsof their children.
The parental attitude argument
also involves the thought that in the
context of prenatal testing, a part, a
disability,stands in for the whole, a
person. The prospective parent who
wants to avoid raising a child with a
diagnosable disability forgets that
along with the disabling trait come
other traits, many of which are likely
to be as enjoyable,pride-giving,positive (and as problematic, annoying,
and complicated)as any other child's
traits. If prospectiveparents imagine
that disability precludes everything
else that could be wonderful about
the child, they are likely acting on
misinformation and stereotype. The
prospectiveparent has made biology
destiny in the way that critics of the
medical model of disability consistently resist.
Disability Rights Critique of Prenatal Genetic Testing
S5
According to the parentalattitude
argument, prospectiveparentsshould
keep in mind that the disablingtraitis
only one of a fetus's characteristics.
The activity of appreciatingand nurturing the particularchild one has is
what the criticsof selectionview as the
essenceof good parenting.Lovingand
nurturinga child entails appreciating,
dren, toward thinking about them
and treating them as products rather
than as "gifts"or "endsin themselves"?
Is it makingus as a societyless resilient
in the face of the inevitablerisks that
our children face, and less willing to
acknowledgethe essential fragilityof
our species?When members of our
society are confrontedwith, for exam-
on or give rise to the same assumption. He suggests that some prospective parentsmay legitimatelyadopt a
or "familial"conception
"projectivist"
of parenthood,and that eitherof these
views is compatible with trying to
assure that any child they raise has
characteristicsthat accord with these
parentalgoals. In the projectivistparent's understanding of
child rearing,the child is
a part of her parental
Those who connect acceptance
of disability to what it
projects, and, within
limits, parentsmay legitdesirable in any parent-child
will worry thIat
relationship
imatelyundertaketo enour attitudes toward parenthood
are changing as a
sure that a child starts
out with the requisites
result of technologies
like prenatal diagnosis.
for fulfilling these parental hopes and aims.
Ruddick is not claiming
enjoying, and developing as best one pie, sex selection or with the possibili- that projectivistparents could ignore
can the characteristicsof the child one ty of selecting for non-health-related a child's manifestedcommitments to
has, not turning the child into some- traitslike sexualorientation,concerns things beyond the parents'life plans,
one she is not or lamentingwhat she is about the selective mentality come but he is sayingthat, for example,the
not. If we were to notice that it is a quicklyto our lips. Indeed, those who parentpassionateabout music may lefantasyand fallacy to think that par- want to rejectthe parentalattitudear- gitimatelyselect againsta future child
ents can guaranteeor createperfection gument in the context of disabling whose deafnesswould make a love of
for their child, if we were to recognize traitsmust recognizethat they arecrit- some forms of music impossible. If a
what is reallyimportantabout the ex- icizing an argument that they them- hearingchild turnsout to be tone deaf
perience of parenting, we would see selvesmay well want to use in the con- and enthusiasticabout rock collecting
that we should be concernedwith cer- text of non-health-relatedtraits. Cer- and birdwatchingbut not music, and
tain attitudes toward parenting, not tainly many worry about the cumula- if the parent views these activities as
with "disabling"traitsin our children. tive effect of individualchoices, about inimical to her parentalvalues or proGood parentswill care about raising the technologizationof reproduction, jects, she need not support them, or
whateverchild they receiveand about and about a decreasingculturalability (within limits) allow other people to
the relationshipthey will develop, not or willingness to accept the realityof do so.
about the traits the child bears. In uncontrollableevents.These concerns
Accordingto Ruddick, the "familshort, what bothersthose wary of pre- trouble even those who profess to be ial" conception of parenthood highnataldiagnosisis what might be called comfortablewith genetic testing and lights a parent'svision of her child as
"the selective mentality."The atten- selectiveabortion.
herselfa parent,sibling-a participant
tion to particular traits indicates a
Nonetheless, many find significant in a nuclearand extended family that
morally troubling conception of par- problems with the parental attitude gives central meaning to life. For exenthood, a preoccupationwith what is argument.One of the most important ample, parentswhose dreamsof child
trivial and an ignorance of what is is that it makeswhat William Ruddick rearinginclude envisioningtheir own
calls the "maternalist assumption," child as a parent would be acting
profound.
Those who connect acceptanceof namely, that "a woman who wants a consistentlywith their conception of
disability to what is desirablein any child shouldwant any child she gets."16 parenthood if they decided not to
parent-child relationship will worry Ruddick acknowledges that many raisea boy with cystic fibrosis,whose
that our attitudes toward parenthood women do hold "maternalist"
concep- sterilityand shortenedlife span might
and ultimately toward each other are tions of pregnancyand motherhood, precludeeither biological or adoptive
changing as a result of technologies out of which that assumption grows. parenthood.A child of such a parent
like prenatal diagnosis.'5 Do these But he points out that there are other might, of course, reject family life in
technologies lead us, one might ask, legitimate conceptions of pregnancy favor of solitude or communal adult
toward the commodification of chil- and motherhood that do not depend companionship,but in using available
S6
September-October
1999 /HASTINGS
CENTER
REPORT
technology to avoid raising a child
who would never be able to fulfill a
deeply cherishedparentaldream, the
parent is acting in accordancewith a
legitimateconception of parenthood.
Although Ruddick is not alone in
thinking that a selective mentality
may be compatiblewith praiseworthy
parenting, many share the disability
community'sworry that prenataltesting threatens our attitudes toward
children, parenthood, and ultimately
ourselves.Certainly,it would be to the
good if we would think more deeply
about our attitudes. If we want to be
parents,why do we want to be parents? What do we hope it will bring
for our children-to-be and for ourselves?And prospectiveparentswould
benefit from grappling with those
questions in the context of prenatal
diagnosis. However, such concerns
could not undergirdspecific policies
regarding prenatal testing for disabling traits.
PrenatalTesting Is Based on Misinformation. The second majorclaim
of the disabilitycritiqueis that prenatal testing depends on a misunderstandingof what life with disabilityis
like for children with disabilitiesand
their families. Connected with this
claim is the questionwhetherdisability is one more form of "neutral"
human variation,or whether it is differentfrom variationsusuallythought
of as nondisabling traits, such as eye
color, skin color, or musicality.
There are many widely accepted
beliefs about what life with disability
is like for children and their families.
Most of these beliefs are not based on
data. They include assumptions that
people with disabilitieslead lives of relentlessagony and frustrationand that
most marriagesbreak up under the
strainof having a child with a disability. Recent studies suggest, for example, that many membersof the health
professionsview childhood disability
as predominantly negative for children and their families,in contrastto
what researchon the life satisfaction
of people with disabilities and their
SPECIAL
SUPPLEMENT/The
families has actually shown.'7 One ingly similar."They did, however,obstrand of this project, then, involved serve:
wresding with what to make of conWhat seemsto distinguishfamilies
flicting perceptionsabout how people
of childrenwith disabilitiesfrom
with disabilitiesand their familiesexotherworkingfamiliesis the intenperiencelife. Three disabilityresearchsity and complexityof the arrangeers in the Hastings Center groupments required to balance work
Philip Ferguson, Alan Gartner, and
and home responsibilitiessuccessDorothy Lipsky-analyzed empirical
fully.For example,parentsof childata on the impact of children with
dren with disabilities,particularly
disabilitieson families.'8Their review,
those with seriousmedicalor besurprisingto many,concludesthat the
havioralproblems,find it moredifadaptationalprofiles of families that
ficult to locateappropriate,
affordhave a child with a disabilitybasically
ablechild care.... Similarly,these
resemblethose of familiesthat do not.
familiesare more dependentupon
According to Ferguson, Gartner,
healthinsurancepolicieswith comand Lipsky'sreadingof the data, famprehensivecoverage.22
ilies that include disabledchildrenfare
on average no better or worse than This same study remindsus of a point
families in general. Some families that both Ruddickand Kittaymade:a
founder, others flourish. Ferguson, child'sdisabilitymay sometimes alter
Gartner,and Lipskydo not deny that the customaryparent-childlife cycle,
familiesare often distressedupon first in which parentsgraduallyrelinquish
learningthat their child has a disabili- daily guidanceand caretakingand-if
ty. And they acknowledgethat fami- they are fortunate-see their children
lies with children who evince signifi- take on adult productiveand caretakcantly challenging behavior experi- ing roles. Depending on the impairence more disruption than do other ment and on the social arrangements
families.But recentresearchon raising that parentshelp a growingchild cona child with a disabilityoffershappier struct, some people with disabilities
news for families than many in our may require their parents' help
society have been led to expect. In the throughadulthoodin securingshelter,
words of one leading family research- social support, and safety.Increasinger, "The most recent literature sug- ly, adultswith disabilitiessuch as musgests that families of children with culardystrophy,spina bifida, cystic fihandicaps [sic] exhibit variability brosis, Down syndrome, and other
comparableto the generalpopulation conditions do not stay "eternalchilwith respect to important outcomes dren," as they were once thought to
such as parentstress,. . . family func- do. Nonetheless, some, albeit small,
tioning, ... and maritalsatisfaction."'9 portion of the population of disabled
Studies of family adaptation have people will be more vulnerable for
begun to recognize the prevalenceof longer than others, and more in need
positive outcomes in many families.20 of what Kittay (borrowingfrom Sara
Indeed, one recent study found that Ruddick)describedas "attentive,proparentsof disabledadolescentsreport- tective love."23
ed more positive perceptionsof their
While it is important to demolish
children than do parents of nondis- the myth that disabilityentails relentabled adolescents.21
less agony for the child and family,
In a 1995 study intended to learn thereis still considerabledisagreement
how a child's disability affected the about what conclusionsto draw from
work lives of dual careerfamilies, the the literatureon the family impact of
authorsfound that the needs and con- a child with disability.In the view of
cerns of families with and without
continued
onpageS 1
children with disabilitieswere "strik-
Disability Rights Critique of Prenatal Genetic Testing
S7
The Context:
What Frames the Discussion
about
Prenatal
Testing
born. Some have acknowledged,however,that there is
A History of OutrightDiscriminationagainst and
a tension betweenthe goals of enhancingreproductive
UnexaminedAttitudesabout Peoplewith Disabilities.
We will not herereviewour nation'srecordof pervasive choice and preventing the births of children who
would have disabilities.Writing about screeningproand invidious discrimination, which is only partly
amelioratedby the passageof laws like the Individuals gramsfor cystic fibrosisin the pages of the American
with DisabilitiesEducationAct (IDEA) and the Amer- Journal of Human Genetics,medical geneticist A. L.
Beaudet observed:"Althoughsome would argue that
icans with DisabilitiesAct (ADA). The history of disthe successof the programshould be judged solely by
criminationagainstpeople with disabilities,including
the effectivenessof the educationalprograms(that is,
episodesof infanticideand compulsorysterilization,is
whether screeneesunderstood the information),it is
long, ugly,and well documented.'
clear that prevention of CF is also, at some level, a
If Americansagree on the morality of little else,
they agree that discrimination,including discrimina- measureof a screeningprogram,since few would advocate expandingthe substantialresourcesinvolved if
tion againstpeople with disabilities,is evil. And most
of us tend to be confidentthatwe do not participatein
very few familieswish to avoid the disease."5Beaudet
such evil. But that confidence is illusory.Even with
acknowledgesthat, in tension with the genetic professional'sstated goal of educating individuals(without
such importantsteps as the passageof the ADA and
IDEA, discriminationis farfrom over.Peoplewith disany investment in the particulardecision those indiabilitiesarestill often treatedas inferiorto nondisabled viduals might reach), those who pay for such education do so in partwith a view to reducingthe number
people.As disabilitystudiesscholarLennardDavis has
pointed out, even the most educated of Americans, of-and costs associated with-children born with
cystic fibrosis.
professorswho make a living by writing about the nature of discriminatorypracticesand who decry disIndeed, the profession of genetic counseling is
based on a deep commitment to helping clients discriminationagainstwomen, people of color,and other
coverwhat courseof action, upon reflection,is best for
minorities, leave their attitudes toward people with
them. Some evidencesuggests,however,thatwhen disdisabilitieslargelyunexamined.Accordingto Davis, in
the writings of these literarytheorists,while "others" abilitiesare involved, both trainedgenetic counselors
and otherswho delivergenetic informationdo not alwhose bodies are normal become vivid, others whose
bodies areab-normalremaininvisible.2
ways live up to that commitment. A recent study deOf course it is not just practitionersof fashionable signed to understandthe experienceof mothers who
receiveda prenataldiagnosisof Down syndromeand
literarytheorywho sometimesharborunexaminedand
discriminatoryattitudes toward people with disabili- chose to continue the pregnancyfound problematicattitudes toward people with disabilities,evidenced in
ties. The bioethics and medical literaturesof the last
the way that medical professionals spoke to those
decade too reveal misinformation and stereotypic
thinking about what disabilitymeans for individuals, prospectivemothers.Accordingto DavidT. Helm, one
families,and society.Many cliniciansand bioethicists of the motherswho receiveda diagnosisof Down syntake it for grantedthat healthstatusis mostly responsi- drome reportedthe followingexchange:
ble for the reducedlife chances of people with a disObstetrician:Youhaveto movequickly.Thereis a
ability,largelyignoringthe role of societalfactorssuch
doctorat [HospitalX] whodoeslate-termabortions.
as educationaland employment discrimination.FurMother:No, I toldyou I'm not going to have an
thermore, these clinicians and bioethicists often disabortion.
count data indicatingthat people with disabilitiesand
their familiesdo not view their lives in solely or even
Obstetrician:Talktoyourhusband.Youmightwant
predominantlynegativeterms;3instead, they may into think about it.'
sist that such data reflecta denial of realityor an exBecauseHelm only providesthis portion of a longer
ceptionalabilityto cope with problems.4
Peoplewho make policy concerningthe dissemina- exchange, the rest of us cannot confidently interpret
tion of genetic informationhave reacheda consensus the exchangehe reports.Advisinga patientto discussa
that the purpose of prenataltesting is to enhance remajor life decision with her spouse is not prima facie
problematic,much less discriminatory.According to
productivechoice for women and families-not to deHelm'sinterpretation,however,these words revealthe
creasethe numberof childrenwith disabilitieswho are
S8
September-October
1999 / HASTINGS
CENTER
REPORT
The Context
physician'sunwillingness or inability to respect this
woman'salreadystated decision to continue the pregcause pediatric geneticists understand better how
nancy with the fetus carryinga disablingtrait.The reno
evidence
that
this
obsteDown syndrome influences the lives of children and
ported exchangeprovides
trician understandsthe ways in which many families their families. According to project member Diana
welcome and nourish-and are nourished by-chilBianchi, who practicesat the New England Medical
dren with Down syndrome.
Center, every attempt is made to introduce the pregAs researchhas shown, obstetriciansmay be more
nant woman and her partnerto familieswho are raisthan
counselors
to
actions
likely
genetic
urgeparticular
ing infants, children,and/or young adultswith Down
their
Helm's
upon
patients.7
study
syndrome. She reportsthat in her
also reports,however,that some gepractice,only 62 percentof women
netic counselors reactednegatively
who discover they are carrying a
to women who intended to bear
Is disat bility one
fetus with Down syndromedecide
and raisechildrenwith Down synto have abortions. That rate of
more fo rm of
drome. A woman who was told
"neutra
abortion upon a positive finding is
II" .huma n
? neutra
'
that the fetus she was carrying
believed to be relativelylow. Diswould have Down syndrome revariatio n, or is it
ability criticspoint to such facts to
the
"[The
differe !nlt from
ported
following:
genetic
suggest that when prospectiveparents obtain more accurateinformacounselor] treated me as though I
variatior ns usually
couldn'taccept this news, although
tion about what life with disability
I told her I could. She asked,'What
thoug ht of as
is like, many realizethat parentinga
areyou going to say to peoplewhen
child who has a disabilitycan be as
nondisal )lirig traits,
they ask you how you could bring
such as eo/e color,
gratifyingas parentinga child who
a child like this into the world?"'
does not.
or
iol
or,
skin
c
To
of
The disabilitycritique proceeds
(Helm, p. 57)
say nothing
this counselor's failure to discuss
from the view that discrimination
musi iceility?
the woman'sdecisionwithout judgresults when people in one group
fail to imagine that people in some
her
that
words
she
it,
ing
suggest
has not thought deeply about what
"other"group lead lives as rich and
The disabilityrights critics bedisabilitiesmean for individualswho live with them
their
own.
as
complex
and for their families.At least from what we learn of
lieve that everyone from literarytheorists to bioethiher from Helm, she does not seem to appreciatethat
cists to obstetriciansand genetic counselorsaresuscepa
with
a
child
Down
into
tible to such failuresof imagination. Moreover,they
syndrome
family
welcoming
is not a decision that needs to be defended;she does
think that the desire of prospectiveparents to avoid
not seem to appreciatethat parentalattitudes differ, raising children with disabilitiesmay depend on that
that traitsthat matter a great deal to one couple may
same failure.
seem inconsequentialto another. Such exchangesare
A Plurality of Disabling Traitsand a Plurality of
rare
be
towardPrenatalDiagnosis.As one begins to
not
similar
can
Attitudes
probably
exceptions;
examples
found in other discussionsof genetic counselingpracreflect on the meaning of using prenataldiagnosis to
tices in the prenataltestingsituation.8
detect disablingtraits,it is importantto notice that the
It is important to remember,however,that many
class of "disablingtraits"is exceedinglyheterogeneous.
counselors
and
work
hard
Prenataldiagnosiscan now detect conditions as differextremely
genetic
physicians
to live up to the valuesof informedconsent and nondient as Lesch-Nyhansyndromeand ectrodactyly(a trait
rectiveness,and many of them are not only awareof
involving a partialfusion of the bones of the fingers
but share the concernsvoiced by the disabilityrights
and toes). Further,not only are the traits heterogeneous, but so are perceptions of their significance
community.Forexample,at the New EnglandMedical
and/or seriousness.Nancy Press'sresearchrevealsthat
Center, women whose fetuses are diagnosed with
Down syndromeare routinelyscheduledto meet with
some generalizationscan be made about what people
a pediatricmedicalgeneticistand a nurseclinicianwho
take to be "serious":for example,mothersconsidering
in
the
care
of
specializes
pediatric genetic patients.
prenatal testing are most fearful of conditions like
These women arescheduledto meet with pediatricians Lesch-Nyhan,which resultsin earlyand painfuldeath.9
who specializein genetics ratherthan obstetriciansbeBut as the infamous Bree WalkerLampleycase indi-
SPECIAL
SUPPLEMENT/The
Disability Rights Critique of Prenatal Genetic Testing
S9
The Context
continuedfrom
page9
cates, there is debate about the seriousnessof ectrodactyly. In 1991, Bree Walker Lampley,a television
newswoman in LosAngeleswho had ectrodactyly,discovered that the fetus she was carryinghad the trait
and, when asked, made it known that she had no interestin terminatingfor such a minor trait;some sugto bring a child into
gested that it was "irresponsible"
the world with such a serious trait.'0Indeed, the researchof Dorothy Wertz and colleaguessuggeststhat
even geneticsprofessionalshave very differentideas of
what is and what is not "serious.""In one of Wertz's
surveys,ceft lip/palate, neurofibromatosis,hereditary
deafness,insulin-dependentdiabetes,Huntington disease, cystic fibrosis, sickle cell anemia, Down syndrome, and manic depressionwere deemed seriousby
some professionalsand not seriousby others.'2
A similarpluralityof views existswithin the disability community.Many groupsrepresentingpeople with
disabilities, such as the National Down Syndrome
Congressand Little People of America,have position
statementsaffirmingthe valueof life with disabilityfor
individualsand families.'3However,there is considerable nuance and disagreementamong groups, and in
fact within some groups.This complexityis suggested
by attitudeswithin the membershipof Little Peopleof
America.Many of those who live with achondroplasia
areconcernedthat prenataltesting,which can identify
heterozygotes(that is, fetuses that will develop into
long-livedpeople with achondroplasia)will be used to
obliteratethe Little People of Americacommunity.In
fact, some membersof that community might use the
technology to selectfor the trait. Nevertheless,many
couples who are heterozygous for achondroplasia
would like to use prenataltesting to identify fetuses
that are homozygous for the allele associated with
achondroplasia.Homozygous achondroplasiais a uniformly fatal condition, and they would like to spare
themselvesthe experienceof bearinga child who will
soon die. Adding to the complexity,discussionsat the
1997 meeting of the Society for Disability Studies
made it clearthat some people with disabilitieswould
use prenataltestingto selectivelyaborta fetuswith the
trait they themselves carry-and some people who
would not abort a fetus carryingtheir own disability
might abort a fetus if it carrieda trait incompatible
with their own understandingof a life they want for
themselvesand their child.
A similardiversityof views towardprenataltesting
and abortion can be found among parents raising a
child with a disability.Many such parentsdo not use
prenataldiagnosisto determinewhether their present
fetus is affected.'4The reasonsfor this are no doubt
many; to some, the trait has come to be unimportant
or irrelevant.Some may refuseit on the ground that
using the technologywould say something hurtful to
or about their existingchild. Other parentsof children
with disabilitiesdecide to use these technologies.
We point to the pluralityof traitsand attitudestowardtesting not to suggestthat the terrainis too complex to be amenable to policy response. Nor do we
think that public policy should be made by taking
polls. The point is simply that people committed to
ending discriminationand improving life for people
who have disabilitiesare not monolithic on the prenatal testingissue,any more than all feministsaremonolithic on a host of"women'sissues"or than membersof
racialminoritiesare monolithic in their stance toward
affirmativeaction or other practicesthat affect them.
Such lack of unanimitydoes not negate the concerns
that thoughtful people have brought to the attention
of the bioethics and genetics communities. But a reasonable policy response must avoid simplifying the
facts;it must take such complexitiesinto account.
Health Carein a ChangingEnvironment.Prenatal
diagnosishas for the past few decadesbeen offeredby
geneticsspecialistsand some speciallytrainedobstetricians or physiciansin maternal-fetalmedicine. Today
prenataldiagnosisis often performedby obstetricians,
who may or may not offer genetic counselingpriorto
performinga test. Obstetriciansareexpectedto obtain
consent for the diagnosticprocedure,but there is debate among professionalsabout what constitutessufficient consent for a procedurethat will likely end with
a pregnancytermination if a condition is identified.
Again, some studiessuggestthat in getting consent for
testing, many obstetriciansseem to be more directive
than the ethic of board-certifiedgenetic counselors
permits.15
Although genetic counseling can be performedby
physicians, nurses, or social workers, typically it is
performedby master'sdegree-levelprofessionalseducated in genetic principlesand short-termpsychosocial counseling.A professionalcorps of around 1,500
genetic counselorshas existed for a quartercenturyin
the United States,about 50 percentof whom provide
prenatalcounseling full time; another 300 or so provide prenatalcounseling part time. In some regions,
prenataldiagnosisis performedby trainedsubspecialists aftergenetic counseling, but increasinglyobstetri-
continuedon page 12
I
S10
September-October
1999 /HASTINGS
CENTER
REPORT
the disability community, this litera- That I want to climb Mount Rainier But does that imply that having a
ture suggests that prenataltesting to doesn't commit me to wanting to characteristic like cystic fibrosis or
select against disabling traits is mis- climb Everest. I appreciate that the spina bifida is of no more conseguided in the sense that it is based on rewardsof climbing Everestmight be quence than being left-handed or
misinformation.That is, if prospective extraordinary, beyond my wildest being a man who is five feet, three
inches tall?Accordingto the disability
parents could see that families with dreams,but I'd settle for Rainier.24
The disabilityresearchersand theo- rights critique of prenatal testing, if
children who have disabilities fare
much better than the myth would rists did not persuadeeveryonein the peoplewith disabilitieswerefully intehave it, then parents would
be less enthusiasticabout the
technology.
c_hild
However,recognizingthat
like mountain
rearing is already
climbing.
there are erroneous beliefs
me
commit
1rhat I want to climb Mount Rainier doesn't
that need to be dispelledmay
not show that the desire for
o wanting
The rewards
to climb Everest.
of climbing
prenatal testing stems from
but I'd settle for Rainer.
EEverest might be extraordinary,
misinformation alone. The
first problem with the argument from misinformation
has to do with the difference
between retrospectiveand prospective projectgroup that raisinga child with grated into society, then there would
judgments. It is one thing to look a disability is not more demanding be no need for the testing. In the
back on a stressfulbut ultimately re- than raisinga child without this con- world they seek to create, if a given
wardingexperienceand say,I'm glad I dition. As a specific type of life chal- health statusturnedout to be a handdid that. It is anotherto look forward lenge, raising a child who has a dis- icap, that would be because of socito the possibilityof a stressfuland per- ability may provide one individualof etal, not personal,deficits;the approhaps ultimately rewardingexperience a particular aptitude or orientation priate response would be to change
and say,I'm glad to give it a try.To ap- with a life experienceof great reward society so that the person could live a
preciate that many families respond and fulfillment, perhapswith a posi- full life with a rangeof talents,capaciwell to stressdoes not commit one to tive transformation.For a differentin- ties, and difficulties that exist for
thinking that it would be a mistake dividual, who possesses a different everyone. In a society that welcomed
for families to try to avoid it. It may characteror aptitude,the overallexpe- the disabled as well as the nondisbe true that, as one of the studies of rience may be negative. Parentsmay abled, there would be no reason to
working families points out, the con- examinethemselvesand conclude that preventthe birthsof people with traits
cernsof workingparentswith disabled they are not choosing againsta child's now called disabling.
In this project, those sympathetic
childrenvery much resemblethe con- specifictraits;they may be making an
cerns of any working parent-ensur- honest and informed acceptance of to at least some forms of prenataltesting were struck by the fact that, for
ing that childrenaresafe,happy,stim- their own characterand goals.25
the
reasons that seem to be complex,
in
ulated, and well caredfor at home, at
Perhaps
Disability
Society.
school, and in after-schoolactivities. most fundamental and irreconcilable membersof the disabilitycommunity
But that study also acknowledgesthat disagreementover the argumentfrom speak at different times in different
working parentsof childrenwith spe- misinformation has to do with just modes about the nature of disability.
cial medical or behavioralneeds find what having a disability is "really" Sometimes,membersof that commuthat meeting those needs takes more like for people themselves and for nity are clear about the fact that distime, ingenuity,and energythan they their families. Just how much of the abling traitshave a "biologicalreality"
think would have to be spent on the problem of disability is socially con- or are not neutral. Adrienne Asch
needs of nondisabledchildren.To ap- structed?Is it reasonableto say that writes, "The inability to move withpreciate that many families emerge in a differentlyconstructedsocial en- out mechanicalaid, to see, to hear,or
stronger,wiser,and even betteras a re- vironment, what are now disabling to learnis not inherentlyneutral.DisAt
sult of such an experience may not traits would become "neutral"char- abilityitself limits some options."26
the
and
this
is
other
acteristics?
it
is
or
that
unreasonable
times,
however,
suggest
Undoubtedly,more of the problem mode usuallyemphasizedin critiques
morallyproblematicto try to avertit.
As Mary Ann Baily put it, child rear- of disability is socially constructed
onpageS13
continued
ing is alreadylike mountain climbing. than many people generally believe.
SPECIAL
SUPPLEMENT/The
Disability Rights Critique of Prenatal Genetic Testing
S11
lationshipthat ideallyaccompanyprenataltesting. Improvedaccessto prenatalcounselingwill competewith
other demands on resources,and probably will lose
cians perform prenatal testing with minimal pretest
out. It is likely,however,that the need for counselors
counseling.
who help people think through what to do with preBoard-certifiedgenetic counselors emphasize the
natal information will continue to grow. No one
likelihood of carryinga fetus with a disabling trait,
basedon the age and family history of the prospective should rest easy with the hope that either alternative
educational methods or alternativeproviders(physiparents.The counseling often includes discussion of
how testing is performed,what it
cians, nurses, or social workers)
alone will be sufficientto meet the
can detect (incuding descriptions
need on the horizon.
of chromosomes and genes), and
what the information may mean
A health <caire system
ReproductiveLiberty.The profor an affectedchild. Currenty, the
that err iplhasizes
liferation of prenatalgenetic testideal processentails an exploration
ing has also occurred against the
of the prospective parents' views
c sts more
cutting
background of the controversy
about abortion. Prenatal testing
about family and children, a disthan trul y informed
cussion of availableeconomic and
decisio )nrnnaking
for genetic disability elicits unexpected responsesfrom both sides
socialresources,and an exploration
d
likely
of the abortion debate: many of
of any experienceprospectiveparwou
ents may have of people who live
those who are uneasy with aborencoura ge3 testing
with the conditions being tested
and dihSCIourage
tion basedon a prenatalfinding of
for. Anecdotal evidence and the
a disablingtraitareprochoice.And
coun ISe iling.
few studies that have evaluated
many who in general are against
howthe right to abortion nonetheless
prenatal counseling suggest,
ever, this sort of in-depth discusapproveof abortionsperformedon
a fetus carryinga disablingtrait.
sion is rare.'6
all
Most genetic counseling takes place (if it does) bethe
Virtually
major work in the disability crifore an invasivetest like amniocentesis.The presump- tique of prenataltesting emerges from those who are
also committed to a prochoice,feminist agenda:Adrition is that most people who attend prenatalcounselwho
will
to
Those
enne Asch, MarshaSaxton,Anne Finger,and Deborah
sessions
choose
undergotesting.
ing
decline testing are typically not challenged by the
Kaplan,for example.17Other pro-choicefeminists,incounseloron that decision-although the setting lends
cluding Ruth Hubbard, Abby Lippman, Carole
itself to the assumptionthat individualsarethereto get
Browner,and Nancy Press,draw on the disabilitycritests ratherthan to make decisions about whether to
tique to question the impact of prenataltesting.'8Like
Often
have
been
referred
these scholars,our workinggroups reflectionsproceed
tested.
by physipatients
get
from the premise that women (and men) have the
cians and do not understandthat prenataltesting is an
option that, in light of their values,beliefs, and needs,
right to determinewhen and how many childrenthey
not
a
want
to
use.
health
care
will
have;within the first two trimestersof pregnancy,
they may
Unfortunately,
that
costs
more
than
abortion
is a legally and morally defensible means of
system
truly
emphasizescutting
informeddecisionmakingwould likely encouragetestexercisingthat right.
latter
is
time-conand
The
What is new about prenataltestingis that it enables
ing
discouragecounseling.
not
reimbursable
readily
by third-partypayprospectiveparents to some extent to determine not
suming,
ers, and can lead to fewer proceduresand more births
only when and how many but also what kind of children they will have. With the exception of revealing
of childrenwith costly medical needs.
the sex of the fetus, currentprenataltesting is used to
In the future, computer-assistededucation techin
and
videos
be
commushould
detect traits considered medically disabling--characvery helpful
nologies
about
predisposition teristics deemed undesirable or departures from
nicating information-especially
or presymptomatictesting--that once was communispecies-typicalfunctioning. In the future it may be incatedby counselors.But again,in a health caredelivery creasinglypossibleto select for traitswe do value.That,
however,is not the possibilitythat has motivated the
systemever more intent on keepingdown costs, things
arelikely to get worse ratherthan betterwhen it comes
to fosteringthe dialogue and the counselor-patientrecontinuedonpage 14
The Context
S12
continuedfrom page 10
September-October
1999 /HASTINGS
CENTER
REPORT
of prenatal testing, those in the disability rights movement speak as if
those traitsindeed are inherentlyneutral. Thus Deborah Kent writes: "I
premised my life on the conviction
that blindnesswas a neutralcharacteristic."27In this other mode, the disability community argument often is
that, different from what prospective
parents imagine, these so-called disabling traits are not, to coin a term,
"disvaluable"in themselves; they are
disvaluable because of the way they
are sociallyconstructed.
Nora Groce's work illustrates the
point about how social arrangements
shape whether a characteristicis disabling.28In Martha'sVineyard in the
19th century,Groce argues,being unable to hearwas not disablingbecause
everyonespoke sign language.Groce's
work establishesthat much of what is
difficult about having a disability
stems from manifold facets of society,
from architectureto education to aesthetic preferences.In choosing how to
constructour societies,we do, as Allen
Buchananputs it, "choosewho will be
disabled."29We could choose differently than we have, and if we were to
choose differently, what's disabling
about what we now call disabilities
would be largely eliminated. Plainly,
then, the social constructionistargument is powerful.The objection concerns,rather,what appearsto be a correlative claim of the disability position: that so-calleddisablingtraitsare
neither disabling nor "disvaluable,"
but neutral.
Trying to delineate, understand,
and come to consensusover this claim
is perhaps the most contentious and
difficultpart of thinking about prenatal testing in the context of the disability critique. It is worth restating
what Asch, Saxton, Lipsky,and others
do and do not mean by the "neutrality" of disability.Adherentsof the disabilitycritiqueacknowledgethat some
characteristicsnow labeled disabilities
are easier to incorporateinto today's
society,or into a reconstructedsociety,
than are others. Thus, no one would
SPECIAL
SUPPLEMENT/The
deny that disablingtraits-departures
from species-typical functioningforeclose some options, or that some
disabilities foreclose more options
than others. A child with Down syndrome may never climb Mount
Rainier because his strength, agility,
and stamina may precludeit; he may
also never readphilosophy becausehe
does not have the skills to decipher
abstractmaterial.Granting that people who can climb mountains and
read abstractpapersderiveenjoyment
and meaning from such activities,
then being foreclosedfrom them, not
by one's own choice, is regrettable.
The lack of possibility is widely seen
as disvaluable.In addition, these lacks
of capacitystem from the characteristics of the individualwho is not strong
enough or agile enough to climb, or
who is unable by any teaching now
known to us to graspcomplex abstract
discourse. In that sense, disability
community critics acknowledge that
these facets of some disabilities are
"real,"inherentin the characteristicitself and not an artifactof any interaction with the environment.Even if all
traitsare to some extent "sociallyconstructed,"that is irrelevantto the fact
that the existence of these traitsforecloses for those who have them the
opportunityto engage in some highly
desirable and valuable activities; not
being able to engagein those activities
is disvaluable.
Disabilitycommunity criticsof the
medical model of disabilityacknowledge that they would be going too far
if they claimedthat societyshould not
value activitiesthat some of its memberscannot engagein; it is harmlessto
valuethe capacityof sight that permits
people to behold Rembrandt'smasterpieces, sunsets, or the faces of family
members and friends. It is not offensive to prize intellectual accomplishment, athletic prowess, or the ability
to appreciatevisual beauty and to regret that not everyone we know can
enjoy them. To the extent that spina
bifida, Down syndrome,blindness,or
cystic fibrosiscurrentlyprecludepeo-
ple from undertakingsome parts of
life that people who do not have those
traits might experience,the disability
critique acknowledgesthat disability
puts some limits on the "open future"30
people seek for themselvesand
their children.
As Bonnie Steinbockargues,if we
reallythought disability"neutral,"we
would not work as we do to maintain,
restore, and promote health in ourselvesand others.We use medicine in
the hope that it will cureor ameliorate
illness and disability.We urge pregnant women to refrainfrom activities
that risk harming the fetus. If we
thought that disabilities were "neutral,"then we could tell women who
smoke or drink during pregnancyto
rest easy,for developmentaldelay,low
birth weight, and fetal alcohol syndrome would all be just "neutralvariations,"of no consequenceto the future child.31
While disabilitycommunity critics
acknowledge that some disabilities
foreclosesome opportunities,they also
hold that callingattentionto the foreclosureobscurestwo importantpoints.
The first is that ratherthan dwell on
the extent to which opportunitiesto
engagein some activitiesaretruncated,
we shouldconcentrateon findingways
for people with disabilitiesto enjoy alternativemodes of those same activities. Philip Fergusonputs it this way:
The point is not so much whether
... a blind personcannotenjoy a
Rembrandt... but whethersocial
can be imaginedthat
arrangements
allow blind people to have intense
aestheticexperiences.... Peoplein
wheelchairsmay not be able to
climb mountains,but how hardis
it to createa societywherethe barriersare removedto their experiences of physicalexhilaration?
...
Someone with Down syndrome
may not be able to experiencethe
exquisitejoy of readingbioethics
papersand debatingethicaltheory,
but . .. that personcan experience
the joy of thinking hard about
Disability Rights Critique of Prenatal Genetic Testing
The Context
continued
fom page 12
disabilitycritique;the motivationfor the disabilitycritique is the realityof usingprenataltestingand selective
abortion to avoid bringing to term fetuses that carry
disablingtraits.Thus the issuewe examinedconcernsa
specialway of using abortion:namely,to select against
disablingtraits.
References
1. SeeAlanGartnerandTomJoe,eds.,Imagesof theDisabled:
DisablingImages(NewYork:Praeger,1987);JosephShapiro,No
Pity(NewYork:TimesBooks,1992);JaneWest,ed., TheAmericanswith DisabilitiesAct: FromPolicyto Practice(New York:
MilbankMemorialFund, 1991).
2. LennardJ. Davis,Enforcing
Disability,Deafiess,
Normalcy:
and theBody(London,New York:Verso,1995).
3. NationalOrganizationon Disability,National Organization on Disability/Louis
HarrisSurveyofAmericans
withDisabilities(New York:LouisHarrisandAssociates,1994).
4. J. E. Tysonand R S. Broyles,"Progress
in Assessingthe
Long-termOutcome of ExtremelyLow BirthweightInfants,"
JAMA276 (1996): 492-93; NationalOrganizationon DisabilwithDisabilities.
ity, SurveyofAmericans
5. A. L. Beaudet,"InvitedEditorial:CarrierScreeningfor
American
47, no. 4
Journalof HumanGenetics
CysticFibrosis,"
(1990):603-605, at 603.
6. David T. Helm, SaraMiranda,Naomi Angoff Chedd,
"PrenatalDiagnosisof Down Syndrome:Mothers'Reflections
on SupportsNeededfromDiagnosisto Birth,"MentalRetardation36, no. 1 (1998): 55-61, at 57.
Ge7. B. A. Bernhardt,G. Geller,T. Doksumet al., "Prenatal
netic Testing: Content of Discussions between Obstetric
Providersand PregnantWomen,"Obstetrics
and Gynecology
91
(1998):648-55; andT. M. Marteau,J. Kidd,M. Plenicar,"ObstetriciansPresentingAmniocentesisto PregnantWomen:Practice Observed,"Journalof Reproductive
Infant Psychology11
(1993): 3-10.
8. CaraDunne and CatherineWarren,"LethalAutonomy:
The Malfunctionof the InformedConsentMechanismwithin
the Contextof PrenatalTesting,"Issuesin LawandMedicine14,
no. 2 (1998): 165-202;andT. Marteau,H. Drake,M. Bobrow,
The
"CounselingFollowingDiagnosisof a FetalAbnormality:
ClinicalGeneticists,and
DifferingApproachesof Obstetricians,
GeneticNurses,"JournalofMedicalGenetics
31 (1994):864-67.
9. NancyPress,et al. "Provisional
Normalcyand 'PerfectBabies':PregnantWomen'sAttitudestowardDisabilityin the Context of PrenatalTesting,"in Reproducing
Reproduction:
Kinship,
Power,and Technological
Innovation,ed. SarahFranklinand
something and reflecting on what
he or she really believes. . . . The
challenge is to create the society
that will allow as many different
pathsas possibleto the qualitiesof
life that make us all part of the
human community.32
S14
HelenaRagone(Philadelphia:
Press,
Universityof Pennsylvania
1998), pp. 46-65.
A
10. AlizaKolkerand B. MeredithBurke,PrenatalTesting:
(Westport,Conn.: Bergin and Garvey,
Sociological
Perspective
1994), p. 9.
11. BarbaraM. Knoppers,Dorothy C. Wertz,Ruth Chadwick et al., "Defining'Serious'Disordersin Relationto Genetics Services:Who ShouldDecide?"American
Journalof Human
Genetics57, no. 4, Supplement(1995):A296, abstract1723.
12. DorothyWertz,"What'sMissingfromGeneticCounseling:A Surveyof 476 CounselingSessions,"Abstract,National
Societyof GeneticCounselorsmeetings,October1998.
13. NationalDown SyndromeCongress,"PositionStatement
on PrenatalTestingand Eugenics:Families'Rightsand Needs,
Little People of
http://members.carol.net/ndsc/eugenics.html.
America, "Position Statement on Genetic Discoveries in
Dwarfism,"http://www2.shore.net/-dkennedy/dwarfism-genetics.html.
14. Dorothy C. Wertz,"How Parentsof AffectedChildren
View SelectiveAbortion,"in Issuesin Reproductive
I,
Technologies
ed. H. Holmes(New York:GarlandPublishers,1992), pp. 16192.
GeneticTest15. Bernhardt,Geller,Doksumet al., "Prenatal
and
"Obstetricians
Marteau,
Kidd,
Plenicar,
ing";
Presenting
Amniocentesisto PregnantWomen."
16. BarbaraBowlesBiesecker,"TheFutureof GeneticCoun22 (1999):
NatureGenetics
Perspective,"
seling:An International
133-37, at 134.
17. MichelleFineandAdrienneAsch,"TheQuestionof Disability:No EasyAnswersfor the Women'sMovement,"ReproductiveRightsNewsletter
4, no. 3 (1982): 19-20;MarshaSaxton,
"PrenatalScreeningand DiscriminatoryAttitudesabout DisEthicsand WomensRights,ed. ElaineHoffability,"in Embryos,
man Barucch,Amadeo E. D'Adamo, and Joni Seager(New
York:HaworthPress,1988);Anne Finger,PastDue: Disability,
Pregnancyand Birth (Seattle:Seal Press,1987); DeborahKaplan,"Prenatal
Screeningand Diagnosis:The Impacton Persons
with Disabilities,"in Womenand PrenatalTesting:Facingthe
ed. KarenH. Rothenbergand Elizof GeneticTesting,
Challenges
abeth J. Thomson (Columbus:Ohio State UniversityPress,
1994), pp. 49-61.
18. Ruth Hubbard, The Politicsof WomensBiology(New
Brunswick,N.J.: RutgersUniversityPress,1990); Abby Lippman, "PrenatalGeneticTesting and Screening:Constructing
NeedsandReinforcingInequities,"
American
JournalofLawand
Medicine 17, nos. 1-2 (1991): 15-50; Carole Brownerand
Nancy Press,"The Productionof AuthoritativeKnowledgein
PrenatalCare,"MedicalAnthropology
10, no. 2 (1996):
Quarterly
141-56; MarthaA. Field, "Killing'The Handicapped':Before
and afterBirth,"HarvardWomensLawJournal16 (1993): 79138.
The second fundamental point is
that rather than concentrate on the
truncation or loss of some opportunities, our society generally-and
prospective parents in particularshould concentrateon the nearlyinfinite rangeof remainingopportunities.
September-October
Indeed, every life course necessarily
closes off some opportunities in the
pursuit of others.Thus while the disability criticsof prenataldiagnosisacknowledge that disability is likely to
entail some amount of physical, psychological,social, and economic hard-
1999 /HASTINGS
CENTER
REPORT
ship, they hold that when viewed
alongside any other life, on balance,
life is no worse for people who have
disabilities than it is for people who
do not. No parentshould assumethat
disability assures a worse life for a
child, one with more suffering and
less quality,than will be had by those
children with whom she or he will
grow up.
The claim then is that overall,
there is no more stress in raising a
child with a disabilitythan in raising
any other child, even if at some times
there is more stress,or differentstress.
In that sense the disabilitycommunity
claims that disability is on balance
neutral. Even here, however, many
find that the terms"neutral"and "normal" are either inaccuratecharacterizations of disabilityor are being used
in confusing ways. Specifically,some
worry that these terms are used sometimes only to describe or evaluate
traitsand at other times to describeor
evaluatepersons.
Evaluationsof TraitsversusEvaluations ofPersons.As alreadymentioned,
the disabilitycommunity itself sometimes speaksabout the descriptiveand
evaluative senses in which disabling
traitsarenot neutral,not normal.Legislation like the ADA could not exist
without a recognition that in some
sense disabling traits are neither neutral nor normal. Indeed, the societal
provisionof special resourcesand services to people with disabilities depends on noticing the descriptiveand
evaluative senses in which disabling
traits are not neutral, and how the
needs of the people who live with
them are, descriptivelyspeaking, not
normal. Yet the recognition of the
obligation to providethose specialresourcesis rooted in a commitment to
the fundamentalidea that the people
living with those traits are, morally
the people bearing
speaking,"normal";
the traitsareevaluativelynormalin the
sense of deservingthe normal respect
due equallyto all persons.Unequal or
special funding expressesa commitment to moral equality. Recognizing
SPECIAL
SUPPLEMENT/The
the non-neutralityof the traitand the
of the person'sneeds is
"ab-normality"
necessaryfor expressingthe commitment to moral equalityand equal opportunity.There is nothing paradoxical about appreciatingthe descriptive
sense in which people with disabling
traitsare abnormalwhile also appreci-
Families
that
include
average
no better
general.
Some
and evaluativeclaims about the trait
do not beara necessarylogicalrelation
to evaluativeclaims about the person
who bearsit. As an evaluativeor moral
claim about the person, it makes perfect sense to say that a person who is
blind is normal;she is normal in the
sense that she deserves the normal,
disabled
or worse
families
ating the evaluativeor moral sense in
which they arenormal.
Some who are sympatheticto prenatal testing worry that people in the
disabilitycommunity (as well as others) often conflate descriptiveclaims
about traits and evaluativeor moral
claims about persons, as for example
when Deborah Kent, who is blind,
writes:
When I was growing up people
called my parents "wonderful."
They were praisedfor raisingme
"likea normal child."As far as I
could tell, they were like most of
the other parentsin my neighborhood, sometimes wonderful and
sometimes very annoying. And
frommy point of view I wasn'tlike
a normalchild-I was normal.33
What does Kent mean when she says
that she "wasnormal"?As a descriptive claim, it is not reasonableto say
that the trait of blindness is normal.
Statisticallyspeaking,it is not. Also, as
an evaluativeclaim, insofaras the trait
can make it impossibleto enjoy some
wonderful opportunities, it does not
seem reasonableto say that the trait is
neutral. The trait may indeed seem
neutraland insignificantwhen viewed
in the context of the whole person;
but that is a claim about the person,
not the trait. On the view of those
sympatheticto testing, the descriptive
children
than
founder,
families
others
fare
on
in
flourish.
usual,equalrespectthat all human beings deserve.
But if it is easy to notice the difference betweenthe descriptiveand evaluativeclaimsabout traitsand the evaluative claims about persons, why do
people in the disability community
(and others) keep slipping between
the two? Erik Parens suggests that
there may be an importantreasonfor
this seemingly imprecise slipping.
Discrimination against people with
disabilitiesoften involves a tendency
to allow the part to stand in for the
whole; Parens's suggestion is that
membersof the disabilitycommunity
sometimes succumb to a similar,
equallyproblematicerror.The majority community sometimes uses the
trait to deny the moral significanceof
the person; the disabilitycommunity
sometimes uses the moral significance
of the person to deny the significance
of the trait.The majoritycommunity
slips from an observationabout a trait
to a claim about a person;the disability community slips from an observation about a personto a claim about a
trait. At important moments, both
groups fail to distinguish evaluations
of traits from evaluationsof persons.
While such slippage may be easily
committed in both communities,and
particularly understandable on the
part of the disability community, it
may be equally counterproductivein
both.
Disability Rights Critique of Prenatal Genetic Testing
S15
In the end, for all of the project
group's disagreementsabout the appropriatenessof employing selective
abortionto avoidraisinga child with a
so-calleddisablingtrait,and about the
aptness of the distinction between
aborting any fetus versus aborting a
particular fetus with a disability, at
least these disagreementsforced the
group to grapple with what many
think is disvaluable or undesirable
about these traits.Albeit uneasily,the
majorityof the working group seems
to think that disabling traits are disvaluable insofar as they constrain or
limit some opportunities.To say that a
disabilityis disvaluableis only to say
that, in the world we now inhabitand
in the world we can imagine living in
any time soon, to have a given trait
would make it impossibleor very difficult to engage in some activitiesthat
most people would want themselves
or their childrento have the option of
engagingin. For this reason,then, the
majorityseems uneasilyto think that
traits are disvaluable insofar as they
preclude what many find precious.
This view was held "uneasily"because
many are keenly awareof how limited
our abilityis to imaginealternativesocial constructions-as well as of the
extent to which traits once thought
unreconstructableare now thought to
be nearly infinitely plastic. We are
keenly aware of the extent to which
the trait that is sex was constructedin
the past in arbitraryand pernicious
ways, as well as of past argumentsthat
sex could not be constructed much
differently.And we recognizehow paltry our ability is to imagine what the
experienceof others is like. Few of us
would havebelievedbeforethe project
meetings began that conjoined twins
would report feeling about their lives
pretty much like people with "normal" bodies report feeling about
theirs.34
It is important to rememberthat
the disability community arguments
are not intended to justify wholesale
restrictionson prenataltesting for genetic disability. Rather, they are in-
S16
tended to make prospective parents
pause and think about what they are
doing, and to challenge professionals
to help parents better examine their
decisions. They are intended to help
make our decisionsthoughtfuland informed,not thoughtlessand automatic. In his book about his son who has
Down syndrome,Michael Berube attempts to steer a path much like the
one ultimately adopted here. He
writes:
I'm... not surewhetherI canhave
any advicefor prospectiveparents
who arecontemplatingwhatcourse
of actionto takewhen they discover they will beara 'disabled'child.
ObviouslyI can'tand don't advocateabortionof fetuseswith Down
syndrome;indeed, the only argument I have is that such decisions
shouldnot be automatic.35
To some, the advice that such decisions shouldn't be automatic may
seem wishy-washyand disheartening.
But to those who, like Hannah
Arendt, think that evil can arise from
thoughtlessness,it seems neither.
Recommendations
to
Professional
Providers
hese reflectionslead to a question
that defied our efforts at consensus: is there a helpful and rationalway
to distinguish, in light of the needs
and interestsof families,between tests
that providersshould routinely offer
and those they should not?
From the beginningof this project,
it was agreedthat using tests for conditions like Tay Sachs is reasonable.
Familieshave a morallydefensibleinterestin avoidingthe stressand sorrow
associatedwith havinga child who has
a uniformly fatal condition such as
this. And at least in the beginning,
many also agreedthat it would be unreasonablefor medicalprofessionalsto
offer tests for non-health relatedtraits
such as, say, eye color. Many agreed
that medical resourcesshould not be
used to help individualssatisfynarcisT
September-October
sism or gain advantage.Further,many
agreed, at least initially,that whereas
prenataltesting to avoid disabilityarguably is consistent with the goals of
medicine, prenataltesting to produce
advantage is not. As James Lindemann Nelson points out, just as most
rejectwhat might be calledthe unconditional demand to welcome the
prospectof a child with Tay Sachs,so
most rejectwhat might be called the
unconditional demand for the socalledperfectchild.36A desirefor what
has no conditionsor constraintsseems
to be at work in both, and in both
seems unreasonable.
If one thinks there are reasonsto
draw lines between reasonable and
unreasonabletests, then the question
becomes, How many and how clearly
can and should such lines be drawn?
Jeff Botkin has made one of the most
sophisticatedattemptsto draw lines.37
To undergirdthat attempt, Botkin offers the general principle that when
inquiringabout the traitsof the fetus,
parentsshould be able to get information "designed to prevent harms to
parents that are approximately the
same magnitude as the harms of an
unwanted pregnancy" (p. 36). The
reasoning goes something like this:
we assumethat the prospectiveparent's
conception of the harm associated
with an unwantedpregnancyis realistic and appropriate.And we recognize
that beyond the abortion itself no
other scarcemedicalresources,such as
prenataltesting and genetic counseling, are required.However,according
to Botkin, we should worry that the
prospectiveparent'sconception of the
harm associatedwith some disabling
traitsis neither realisticnor appropriate. "The disappointment parents
may feel [in circumstanceswhere the
condition is minor] is real, but disappointment from unrealistic or inappropriate expectations need not be
considereda harm worth preventing"
(p. 37). That is, we should develop
criteria to help determine when the
harm associatedwith a disablingtrait
is realisticand appropriateenough to
1999 / HASTINGS
CENTER
REPORT
warrantusing medicine'sresourcesto
poses. On the other hand, proponents
of disability rights may object to attempting such precisedistinctions,for
severalreasons.First,enlistingmedical
professionals to list the conditions
approvedfor tests and exclude others
as "notseriousenough or burdensome
prevent it.
Botkin offers four criteriato help
distinguishconditions serious enough
to warrantusing those resources:the
severityof condition, the age of onset,
the probabilitythat the genotype will
prospectiveparentsto think carefully
about testing for any traitsthat might
be coveredunder the first part of the
ADA, but unreasonablefor them to
test for traitsthat arenot covered?The
first or "functional"partof the definition would state that a disabilityis a
Recent studies suggest that many members of the health professions view
childhood disability as predominantly negative for children and their families,
in contrast to what research on the life satisfaction
of people with disabilities
and their
families
has
actually
manifestas disease,and the probability that the condition will occur in
those without specificriskfactors.For
example, on Botkin'saccount, conditions such as hemophilia, Down syndrome, cystic fibrosis, and muscular
dystrophy produce enough harm or
burden for the family to warrantthe
use of the resources and the act of
abortion. Among the conditions that
are not seriousenough to warrantthe
use and act are most cases of asthma
(which can be effectively treated),
Marfansyndrome(which has "limited
impact on the life of the child and
family in terms of effort, time, and
financialresources"[p. 38]), Huntington disease (since "adultonset conditions do not constitute a burden to
parentson the same magnitude as an
unwanted child" [p. 38]), and schizophrenia (where a genotype may be a
necessarybut not sufficient cause for
the disease).
Yet however sophisticatedBotkin's
attempt may be to distinguish for
policy purposes between serious and
minor disabling traits, at least two
sorts of objection can be raisedto any
such attempt. On the one hand,
Dorothy Wertz'sresearchshows that
even among genetic professionals,
there is deep disagreementabout what
constitutes a "serious"genetic trait.38
In her view, therefore, Botkin's first
apd arguablymost important criterion won't work for public policy pur-
SPECIAL
SUPPLEMENT/The
shown.
enough"turnsindividual,private,parental decisions into sociallysupported
ones. Also, it increasesthe likelihood
that an explicitly devaluing message
will be sent about people whose conditions arelisted as "seriousenough to
avoid." Indeed, disability critics are
horrified at the thought of officially
identifying "bad"and "less bad" disabilities. Such lines would pit some
membersof the disabilitycommunity
against others. Some members of the
community would end up on the
right side of the tracks,others on the
wrong.
To convey that disability is one
characteristic-one normal, neutral
form of human variation-the disability community may tolerate considerableparentalautonomy to select
against traits-in fact, more than it
would like. In this project,at least, in
rejecting the idea of drawing lines,
membersof the disabilitycommunity
came to occupy a position quite like
the one occupied by proponents of
parental autonomy. Ultimately, this
preferencethat the decision be parental, not medical,preventeda consensus
about one form of line-drawing.
In the absence of a line between
serious and minor disabling traits,
perhapsthere could be a line between
disabling traits and other sorts of
non-health-relatedtraits.Forexample,
would it work, as a public policy compromise,to say that it is reasonablefor
physical or mental impairment that
substantiallylimits one or more of the
major life activities of an individual.
The strengthof this possibilityis that
such traitsare associatedwith stresses
that families might reasonably attempt to avoid. Thus the distinction
might be serviceable,in spite of the
contestabilityof the phrases"substantiallylimits"and "majorlife activity."
Severalfeaturesof this approachto
determining the difference between
reasonableand unreasonabletests are
worth noting. First,it allows the people who will bearthe consequencesof
the decision (that is, the prospective
parents) to determine what disabling
traits are sufficiently serious to warrant abortion. Second, it retains a
clear connection between medical resources and health status.Third, it is
not consistent with testing for nonhealth-relatedtraitssuch as sex, sexual
orientation,eye color, height, or similar traits.
However, our working group did
not reacha consensusthat it would be
reasonableto offer tests only for traits
covered under the ADA, for roughly
the same reasonsthat it resisteddistinguishingamong disablingtraitsof different severity.At least three reasons
were given. First,those representinga
disabilityrights perspectivearguethat
while in the best of all possibleworlds
it perhaps would not be harmful to
draw such a line, it would be in this
Disability Rights Critique of Prenatal Genetic Testing
S17
world of rampant discrimination
against people with disabilities. Unpersuadedby the critiquesof the expressivist argument, and wanting to
characterize disability as a form of
human variationas acceptableas any
other, they believe that drawinglines,
whether among disablingtraitsor between disabling traits and nondisabling traits,will send a hurtful message
free to choose whatevertraits will be
beneficial for their children. But our
projectdid not systematicallytake up
what is at stake in selecting for traits;
thus a response to that argument
would be out of place here.39
For many in the projectgroup, the
refusalto accept any line-drawingwas
a frustrating and disappointing result-as it will be for others. It will
Genetic Counseling and
Educating People about
Disabilities
V/hoile this documentis the record
W of disagreementover the substantive question about what traits
may reasonablybe tested for, on the
proceduralquestionabout how prenatal tests are ideally offered and how
the resultsof such tests
are ideally discussed,
there is considerable
The majority community
sometimes
uses the trait to
agreement.
of the person;
the disabilit y
Perhapsmost impordeny the moral significance
tant, in accordancewith
sometimes
uses the moral significance
of
community
~ the ethic of genetic
of the trait.
the person to deny the significance
counseling, all genetics
professionalsmust help
prospectiveparentsgive
truly informed consent
to and about people with disabilities. be disappointing to many in the to receive testing and equally must
Second, as explained by Dorothy mainsteam medical community who help patientsreachtruly informeddeWertz, even if our group could reach would like to admit some but not all cisions about how to use test results.
consensus about how to draw such a kinds of prenataltesting. And it will Based on respect for persons, and as
line, what happens in practicewill be be disappointingto many proponents articulatedin the National Society of
determined by the desires of con- of disabilityrights,who while worried Genetic CounselorsCode of Ethics,40
sumers and the decisions of health about increasingsocietal control over genetic counselors are committed to
care delivery systems responding to the characteristicsof children know helping individualsunderstandgenetthose desires. Third, drawing a line that failing to distinguish acceptable ic information and to acting on that
betweentraitscoveredunderthe ADA from unacceptabletesting will proba- information in accordancewith their
and those not coveredwould be pater- bly lead to more testing, to more at- own values.Respectfor the equalityof
nalistic;that is, doing so would be to tempts to screenout all sortsof attrib- personsand for the legitimateheteromake decisionsfor prospectiveparents utes, and possibly to increasingintol- geneityof theirlife projectsis arguably
that are rightlytheir own.
eranceof diversityin the human pop- one of the most substantive values
Each of these argumentshas prob- ulation and devaluing of adaptability availableto us.
lems. Objections to the expressivist to the unexpectedin life.
There are prenatal testing prowere
above.
The
our
Nonetheless,
explored
argument
project group grams that help prospective parents
chief objection to the second argu- could not reach a consensus about gather informationabout what life is
ment is that it is reallynot so much a drawinglines between reasonableand like for families with children who
moral case against drawing lines as a unreasonabletests-nor did we have have disabilities.Such programshave
prediction that such lines would fail. the opportunityto discussalternatives begun to foster the sort of truly inWhile ethical analysishas to take ac- to line-drawing in the provision of formed consent that the disability
count of the facts and imagine how prenatal diagnostic services. Clearly, community is calling for and that the
they will change, the point of such additionaldiscussionand researchare ethic of genetic counselorsaspiresto.
analysisis not to predictthe futurebut needed to achieve a balance between Yet some evidence suggeststhat there
to describe how the future ought to competing visions of how best to use are still physiciansand genetic counbe-how it would be if our practices this technology in clinicalcare.When selors who, for example, display surwere more rationaland just. An ade- public policymakersexplore these is- prise or distressupon hearing that a
quate responseto the argumentfrom sues in the future, we hope they will woman wants to bring to term a fetus
paternalismwould require analyzing benefit from knowing in advancejust identified as having a disability.If gewhat is at stake in selectingfordesired how deep the disagreement can be netics professionals and obstetrical
traits,since the argumentis rooted in about the wisdom of "drawinglines" providersareto help individualsmake
the thought that parents should be in this context.
truly informed decisions, then they,
.WkM
S18
September-October
1999 /HASTINGS
CENTER
REPORT
like everybody else in the "majority"
community, must identify and overcome biases against people with disabilities.
The first, crucial step in helping
patientsachievetrulyinformedconsent
and make truly informed decisions is
to give providersaccessto good information about what disabilityis really
like for children with disabilitiesand
for their families.Educationabout life
with disability-as it is viewed by people who live with disabilities-is still
too rarelyofferedto those who deliver
genetic information. Indeed, according to one recent survey,many recent
graduatesof genetic counseling programs report that they think genetic
counseling programsshould highlight
such education more than they do
now.41Disabilitymust become an important topic in the training of anyone who offers prenatalgenetic tests,
whetherthat personis a genetic counselor, medical geneticist, an obstetrician, a nurse, or some other health
careprofessional.For those who desire
to promote such education,42the resources are alreadyavailable,and indeed some programsin genetic counseling and in medicalgeneticscurrently avail themselvesof those resources.
Increasingly,thanks to the work of
people like Marsha Saxton,43 genetic
counselors receive education about
disabilityand thus can help prospective parentsreceivethe same, whether
by visiting a family with a child who
has the identified trait, by meeting
adults with the trait, or by obtaining
information produced by support
groupsfor people with the trait.
In addition to this general point,
we can offer some specific advice
about the opportunitiesfor presenting
disability-relevantinformationto parents. There are three junctures at
which healthcareproviderscould offer
such information. The first is before
a prenatalscreeningtest. Increasingly,
pregnantwomen first encounter prenatal diagnosis in the office of their
obstetrician-gynecologistvia the offer
of a screeningtest (for example,triple
SPECIAL
SUPPLEMENT/The
markerscreeningfor neural tube defects and Down syndrome or carrier
testing for cystic fibrosis). Currently,
prenatal screening is too often presented as a part of routine care, the
purposeof which is purportedlyto insure the health of the baby, rather
than as a test for potential disabilities
that parentsmight choose to avoid.As
more and more disabilitiescan be detected prenatally,perhaps all that is
possibleat this first,earliestjunctureis
for prospectiveparents to receive accurateinformationabout the purposes
of screening, and brief but balanced
information about the disabilities
being tested for. Such a discussion,
aided by well-prepared educational
materials, need not take much time
and could begin to help prospective
parentsask the fundamentalquestions
they should be asking:Why do I want
a prenataltest?Do I understandwhat
I think I am trying to prevent?What
do I know about spina bifida, Down
syndrome,or whatever?Will having a
child with one of these conditions
preventme from gaining what I want
in having a child?As new media are
developed,particularattention should
be paid to helping prospectiveparents
grapplewith those questions.
A second educationalopportunity
is in genetic counseling prior to amniocentesis. This opportunity arises
for those women who requesteda prenatal screeningtest (such as the triple
screen) and receiveda positive result,
and for those women (generallyolder
than 35) who may be referreddirectly
for amniocentesis. During this session, the provider discusseswith the
patient whethershe wants to undergo
this invasiveprocedure.
The pretestsessionsmay not, however,be idealtimes to explorewhat life
with disabilityis like. Projectmember
BarbaraBieseckerput it this way:
To make an informed decision
aboutprenataltesting,clientsneed
to understandwhatcanand cannot
be detectedand what theiroptions
are if a condition is found. They
also need to have their questions
addressedand, as MaryWhite suggests,to engagein a dialogueabout
theirvaluesand beliefs.
However,frequentlyin a prenatal setting thereis limited time to
explorethe meaningof a life with
disability.Further,most prospective parents defend themselves
emotionally against the anxietyprovokingthoughtthat a random,
unlikely condition could affect
their fetus. As this strategy for
copingwith the normalanxietyof
pregnancyis healthy and largely
unconscious,it may not be effective for counselorsto challengeit.
Parentsmay neitherwant nor be
able to explore their fears about
the futurehealthof their fetus;indeed, they may resentbeing asked
to engage in such a threatening
exercise.44
However,if thereis a positiveresult
on the amniocentesis,then a further,
post-testsessionshould occur-a third
opportunity for counseling. About
the feasibilityof providing disabilityrelevant information in the post-test
genetic counseling, there is not yet a
consensus. Diana Bianchi observed
during one project meeting that "the
post-test genetic counseling session is
the ideal time to educate someone
about the natureof disability.Most of
the severalhundredcouplescarryinga
fetus with a chromosomeabnormality
that I have been involved with over
the past twelve years of my genetics
practice have welcomed information-the more, the better-prior to
making any decisions."45 Bianchi
thinks that only the realityof a positive test result can make most people
think hard about what it would mean
to welcome a child with disabilities
into their families.Othersthink, however, that the post-test session can be
"an unteachable moment."46Many
prospectiveparentswill be sufficiently
distressedby a positive test resultthat
they will not be able to absorb new
information about disability.As tests
Disability Rights Critique of Prenatal Genetic Testing
S19
are performedearlier,it may be that
more time will be availableto think
about the decision and thus that there
will be greateropportunityto get to a
teachablemoment. But for now, the
time between receivingthe test result
and making the decision whether to
honor both acceptancesand refusals
of those offers.
As Nancy Pressand CaroleBrowner have argued, the offer of prenatal
in that
genetic testing is not neutral;48
context it means that the one who offers the test thinks that a reasonable
tion includes education about the nature of disability,it may be that neither pre- nor post-test genetic counseling sessions are the best places to
help prospectiveparents learn about
the nature of disabilities and think
about the meaning of parenthood.If
It is crucial that prospective parents are offered both information about
disability and the opportunity to explore the values and dreams that enter
into deciding what to do with prenatal genetic information. Equally crucial
is that professionals honor both acceptances
and refusals of those offers.
abort is short-and fraughtwith anxiety for the woman or prospectiveparents, even those who find that they are
able to learn.
If and at whatever point in the
process clients indicate they want information about disability, they
should receiveit. The question then is
what they need. According to the
Down Syndrome Congress, prospective parentswho learn that their fetus
has a disabling trait need to receive:
"(a) information that seeks to dispel
common misconceptions about disability and presentdisabilityfrom the
perspectiveof a personwith a disability; (b) information on communitybased services for children with disabilitiesand theirfamiliesas well as on
financialassistanceprograms;(c) materialson specialneeds adoption; and
(d) a summaryof majorlaws protecting the civil rightsof personswith disabilities. [Also,] people with disabilities and parentsof peoplewith disabilities should be availableto talk with
futureparents."47
It is crucialthat prospectiveparents
areofferedboth informationabout disabilityand the opportunityto explore
the values, desires, fears, and dreams
that enter into deciding what to do
with prenatal genetic information.
Equally crucial is that, in accordance
with the ethic of genetic counseling,
professionals who make such offers
S20
person might go down the path of
testing and selective abortion. Offering the post-test opportunity to explore information about disability,as
well as the feelings and values that
arise in the context of a positive test
result,would convey that such exploration could be an important and
worthwhile activity. In particular it
would mean that the one who does
the offering thinks that a reasonable
person might not go down the path
of selective abortion-even though
when she accepted the test she tentatively thought she would. Yet just as
providersin a pretestcontext must, in
accordancewith the ethic of genetic
counseling, respect the decisions of
those who do not want to receivetesting at all, so must they respectthe decisions of those who do not want to
receivepost-testcounseling.
We stronglysupportprovidingsuch
information about life with disability-although not becausewe think it
will convince prospective parents to
raise disabled children. It very well
may convince them that that path is
not the one they wish to travel.Much
more researchis needed into the most
effective tools and counseling methods that will help prospectiveparents
achievetruly informeddecisions.
Even though it is crucial to make
sure that the professionaltraining of
those who provide genetic informa-
September-October
not, then when can individualsengage
in the sort of reflectionabout the nature of disabilityand parenthoodthat
we think needs to take place if decisions are to be truly informed?It may
be, as James Lindemann Nelson has
argued,that the best opportunitiesto
educate people about disability are
well upstream of the counseling session. Perhaps our best hope is that
good informationabout disabilitywill
permeateour culturemore thoroughly-that there will be more television
and radio shows, more plays, more
newspaperarticlesthat accuratelyportray the lives of people with disabilities, and more books like Berube'sLife
as We Know It. Programsin genetic
counseling, medical genetics, and obstetrics should integrate education
about disabilityinto their curricula.
Lives of Different
Sorts
eople with disabilitiesare a recent
contingent in the civil rights
march that is arguably the greatest
moral achievement of the twentieth
century.We fail our childrenif we do
not educatethem about the natureof
disability and the history of the disability-rightsmovement.
In the end, one of the most important points of agreementin this project is that ignoranceabout the nature
of disability is widespread and that
1999 / HASTINGS
CENTER
REPORT
such ignorance is one of the primary
sourcesof the discriminationsuffered
by people with disabilities.Our outrageat that discriminationis rooted in
our fundamentalcommitment to the
moral equality of all persons. Out of
that same respect for persons grows
our belief that prospective parents
should have the liberty to make decisions about the uses to which they will
put prenatalinformationabout genetic disability.As those in the disability
community have argued since they
first launched their campaign to get
medicine and bioethics to examine
the assumptionsbehind prenataldiagnosis, those decisionswill be truly informed-those exercisesof libertywill
be authentic-only when people in
our society come to learn what disability reallydoes and does not mean
for individualsand their families.
Although the group as a whole
does not accepteveryclaim in the disability community'scritiqueof prenatal testing, we do wholeheartedlyendorse its central recommendationto
reformhow prenatalgenetic information is communicated to prospective
parents. Even with the best information about the meaning of disability
to various individuals and families,
and even if that information is made
availableto prospectiveparentsmany
weeks before they must make any decisions about parenthood,many (perhaps most) will choose to forego raising a child with a disability. But if
prospectiveparentscomprehendwhat
is possible given a disability, if they
carefully ask themselves hard questions about what they want and will
appreciatein a future child, then they
and any future children they raise
have a better chance for fulfillment
and for mutual, rewardingfamily life.
And if genetics professionals learn
more about what raisingdisabledchildren can mean, rethink their approachto parents,and help those parents better imagine what a child'sdisability might mean for their family,
then some progresswill be made in
honoring the disability rights move-
SPECIAL
SUPPLEMENT/The
ment's central message that our society must be able to value people and
lives of many different sorts. Only as
we take that message seriously can we
be confident that our prenatal decisions will improve familial and communal life.
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About THE HASTINGS
37. JeffreyBotkin, "FetalPrivacyand
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CENTER
The HastingsCenteraddressesfundamentalethicalissues in the areasof health,medicine,and the environment as they affectindividuals,communities,and societies. With a small staff of senior researchersat the
Center and drawing upon an internationally
renownedgroup of over 100 elected Fellowsfor their
expertise,The Hastings Center pursues interdisciplinaryresearchand educationthat includesboth theory
and practice.Foundedin 1969 by philosopherDaniel
Callahan and psychoanalyst Willard Gaylin, The
Hastings Center is the oldest independent,nonpartisan, interdisciplinaryresearchinstitute of its kind in
the world. From its earliestdaysThe HastingsCenter
S22
42. Asch, "ReproductiveTechnology,"
AppendixA (pp. 108-17).
43. MarshaSaxton,DisabilityFeminism
Meets DNA: A Study of an Educational
Studentson the
ModelforGeneticCounseling
SocialandEthicalIssuesof Selective
Abortion.
The GraduateSchool,The Union Institute,
BrandeisUniversity(1996) [dissertation].
44. BarbaraBowles Biesecker,personal
communication.On parents'views of the
future health of their fetus, see Barbara
BowlesBieseckerandTheresaM. Marteau,
"TheFutureof GeneticCounseling:An InNatureGenetics22
ternationalPerspective,"
(June1999): 133-37.
45. Diana Bianchi,personalcommunication.
46. LoriB. Andrews,JaneFullerton,
Neil
Holtzmenet al., Assessing
GeneticRisks:Implicationsfor Health Policy (Washington,
D.C.: National AcademyPress, 1994), p.
150.
47. NationalDown SyndromeCongress,
"PositionStatementon PrenatalTestingand
Eugenics: Families' Rights and Needs,"
http://members. carol.net/ndsc/eugenics.
html.
48. Nancy Press and Carole Browner,
"Collective Silences, Collective Fictions:
How PrenatalDiagnosticTesting Became
Partof RoutinePrenatalCare,"in Women
and PrenatalTesting,pp. 201-18.
has understoodthat the moral problemsarisingfrom
rapidadvancesin medicine and biology are set within
a broad intellectualand social conext. The Center's
collaborationswith policymakers,in the privateas well
as the public sphere,assistthem in analyzingthe ethical dimensionsof theirwork.
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September-October
1999 /HASTINGS
CENTER
REPORT