There is the starting article by Beeson. A reply by Peter Singer and a reply by Beeson to the reply from Peter.
http://www.lahey.org/Ethics/newsletter/Win2000_HTML.stm Social and ethical challenges of prenatal diagnosis Diane Beeson, PhD
Diane Beeson, PhD
Chair of the Department of Sociology and Social Services
California State University, Hayward
In the past three decades, the process by which new members are admitted to the human race has been under-going a profound transformation. Pre-natal diagnosis has made it possible to abort fetuses selectively on the basis of an increasingly wide range of characteristics. In the United States this process has decreased sharply the number of infants born with Tay-Sachs disease, Down's syndrome and neural tube defects. More significantly, throughout the world it has reduced by millions the numbers of females born and thus has significantly altered sex ratios in several countries. For many prospective parents, prenatal diagnosis is a miraculous solution that removes risks they perceive as totally unacceptable. Other young parents-to-be find that prenatal testing thrusts them into an emotional and moral quagmire, without providing adequate support or guidance. The proliferation of prenatal testing and our ability to detect an ever-wider range of conditions, including susceptibility to late onset disorders, calls us to reflect on the wisdom, consequences, and direction of these developments.
Amniocentesis, the first prenatal testing procedure to become widely used, can reveal conditions such as chromosomal disorders (including Down's syndrome and trisomy18), single gene disorders (including sickle cell disease and cystic fibrosis), and biochemical abnormalities (including those associated with neural tube defects). More recently, chorionic villus sampling offers earlier diagnosis but has a somewhat higher risk of procedural failure and fetal loss.
With the advent of maternal serum screening, a simple blood test of pregnant women has permitted the detection of neural tube defects and an increasing number of other conditions in the developing fetus. In pregnancies resulting from in vitro fertilization, genetic testing can be done prior to implantation, but this is not a procedure that can be used in natural pregnancies. Despite promising developments, for the vast majority of fetal anomalies the only significant medical intervention is abortion. This close association between prenatal diagnosis, selective abortion and the tension involved in the uncertainty is transforming the meaning and experience of pregnancy and making it increasingly difficult to avoid the social and ethical questions that are implicit in this process.
Support for prenatal screening, testing and the accompanying use of selective abortion has broad acceptance among the general public, particularly among those who are young, white and highly educated. They may view testing as an expression of reproductive liberty and choice, and some maintain that prospective parents have a responsibility not to bring a disabled child into the world both for the sake of the child and for the sake of society.
Prenatal testing is based on the assumption that the vast majority of cases in which serious anomalies are identified will result in abortion. However, advocates like to point out that such tests also prevent abortion in some unplanned high-risk pregnancies by reassuring prospective parents that certain anomalies are absent. Few advocates of prenatal testing encourage or condone selective abortion for fetal sex selection or minor genetic problems, but they disagree about the extent to which abortion should be restricted for these factors. Some prefer legal restrictions or protections and others only moral suasion.
Powerful as arguments for the use of prenatal diagnosis of fetal disorders may be, there is deep concern among many in the United States about the social and ethical implications of these practices. The most widely recognized objections to selective abortion are based on the belief that all human fetuses are persons with attendant rights. Such objections typically reflect blanket opposition to abortion. But others, who are in principle strongly pro-choice, are increasingly uneasy about these practices as well. They see selective abortion becoming less an expression of personal choice and increasingly a socially determined response to a situation in which alternatives, such as assurance of good medical care and community support for children with special needs, are lacking. They point out that while we expand prenatal diagnostic services, social policies limit resources for children and for parents of children with disabilities. Then we use the rhetoric of individual autonomy to justify placing pregnant couples in the position of having to make difficult decisions.
The central assumption behind the deployment of prenatal diagnosis is that life with a disability is not worthwhile and is primarily a source of suffering. Yet, evidence suggests that those with congenital anomalies and disabilities view these as the normal condition of their lives, perceiving themselves as healthy. In fact, those with disabilities often achieve the same high levels of life satisfaction as non-disabled persons. Much of the suffering they do experience comes from the isolation imposed by inadequate social accommodations which render their disability more salient and the prejudice that treats the disability as the person's only relevantchar-acteristic.1
It is dangerous to make assumptions that devalue the lives of those with disabilities when more than 50 million people in the United States have disabilities, and many of us will become disabled for a significant portion of our lives. Critics of selective abortion argue that negative attitudes toward those with disabilities are based largely on fear, prejudice and an unwillingness to challenge or even examine discriminatory social arrangements. The tendency to reduce individuals to their disability is one that seems particularly prevalent among many healthcare providers whose work necessarily focuses them on that issue. In addition, mental retardation holds special stigma for the most highly educated, particularly in the United States. These attitudes diverge sharply, not only from those of disabled individuals, but from the response of their family members as well. Parents of children with even severe life-threatening disabilities have been found to be much more likely to reject the idea of prenatal testing and selective abortion than parents without such experience.
In addition to the fact that our fears and biases limit our understanding of the intimate experience of disability, those biases have a major impact on our ability to counsel others or to decide ethically whether some people are better off never being born. Genetic counseling is usually offered as "unbiased" and "non-directive." However, Lippman and Wilfond have shown that "before-birth"
information presented in obstetrical set-tings presents a different perspective on Down's syndrome than "after-birth" information presented by pediatricians. The first is largely negative, while the latter tends to be more positive.2
From a disability-rights perspective, prenatal testing for fetal anomalies gives a powerful message that we seek to eliminate future persons with disabilities, fails to recognize the social value of future persons with disabilities, and conveys a devaluation of those now living with disability. Disability rights activist Marsha Saxton argues that the most serious problem the procedure poses may be the loss of the deeper experience of our humanity that comes from confronting, rather than attempting to avoid, our human vulnerability.3
Many women still would prefer not to expose their pregnancies to extensive testing even for small risks, and would not consider selective abortion. Recent re-search,however, indicates that many of these procedures have become so routinized that women often feel the choice to undergo testing is not completely voluntary. These women find it difficult to turn down testing when it is offered be-cause acceptance seems to be the only option sanctioned by medical science.4 Not surprisingly, research suggests that women who decline testing are more likely to be blamed by health professionals and lay groups for their child's disability.5
Women who "choose" prenatal diagnosis and selective abortion are inevitably responding to a social context in which medical care and social support for all children are recognized to be problematic at best, and one in which those with disabilities are not highly valued. For these women to have meaningful options, we first need to acknowledge that their decision to consider selective abortion reflects not only inherent qualities of the fetus, but social conditions as well.
Avoiding human imperfection by eliminating potential persons based on their phenotypes or genotypes is a strategy that leads us into ever more difficult quandaries, particularly as we expand the range of genetic conditions we can identify. Shall we eliminate fetuses with susceptibility to breast cancer or heart disease? What about Alzheimer's disease? How many years of good health does it take to justify one's existence?
At what point will we address the fact that it is not genes, but poverty, poor nutrition and lack of prenatal care that cause the vast majority of illnesses and disabilities? By focusing so many re-sources on the elimination of potential persons with disability, we are drifting toward a eugenic resurgence that differs only superficially from earlier patterns. In the process, we are seriously distorting the historical purpose of medicine as healing. We are creating a society in which disability is becoming increasingly stigmatized, with the result that human imperfection of all kinds is becoming less tolerated and less likely to be accepted as normal human variation. We must question where the rapid proliferation of pre-natal testing for an increasing variety of traits is taking us; and medical professionals, in particular, need to question the social policies that increasingly cast them, and the prospective parents they serve, as gate-keepers at the doors of life. Footnotes
1 Asch A. Prenatal diagnosis and selective abortion: a challenge to practice and policy. Am J Public
Health 1999;89(11):164957.
2 Lippman A, Wilfond BS. Twice-told tales: stories about genetic disorders. Am J Hum Genet
1992;51(4):9367.
3 Saxton M. Prenatal Screening and Discriminatory Attitudes About Disability in Embryos, Ethics and
Women's Rights: Exploring the New Reproductive Technologies. Baruch EH, et al (eds). Haworth
Press, New York 1988:217224.
4 Browner CH, et al. Ethnicity, bioethics, and prenatal diagnosis: the amniocentesis decisions of
Mexican-origin women and their partners. Am J Public Health 1999;89(11):1665.
5 Marteau TM, Drake H. Attributions for disability: the influence of genetic screening. Soc Sci Med
1995 Apr;40(8):112732.
http://www.lahey.org/Ethics/newsletter/Spring2000_HTML.stm#dialogue Prenatal Diagnosis
Diane Beeson (Lahey Clinic Medical Ethics Newsletter, Winter 2000) is right to draw our attention to
the "Social and ethical challenges of prenatal diagnosis." These challenges will increase in complexity
as our increasing knowledge of genetics enables couples to learn more about their unborn children.
But there are some fundamental issues that I see very differently from Beeson. She goes astray when
she asserts that the "central assumption" of prenatal diagnosis is "that life with a disability is not
worthwhile and is primarily a source of suffering."
Before considering this claim, think for a moment about two related questions. First, how important is
it to most parents to give their child the best possible start in life? Second, how serious a reason does
a woman need in order to be justified in ending her pregnancy?
The answer to the first question is that, for most parents, giving their child the best possible start in life
is extremely important. The desire to do so leads pregnant women who have smoked or who drank
heavily for years to struggle to kick the addiction; it sells millions of books telling parents how to help
their child achieve her or his potential; it causes couples to move out to suburbs where the schools are
better, even though they then have to spend time in daily commuting; and it stimulates saving so that
later the child will be able to go to a good college.
The answer to the second question must begin with the fact that, in accordance with the decision in
Roe v. Wade, a woman in the United States can, in the first and second trimesters, or at least until
the fetus is viable, terminate her pregnancy for any reason whatsoever. This does not, of course, mean
that she is ethically justified in doing so. Some say that she is never ethically justified in terminating
her pregnancy, and others that she is justified in doing so only to save her own life, or in cases of rape
and incest. But Beeson is not arguing from this standpoint. She writes so as to appeal to those who
are "in principle strongly pro-choice." So let me put my own cards on the table, and acknowledge that,
as I have argued elsewhere, I do not think that a fetus is the kind of being that has a right to life.1,2
Hence it is not hard to justify terminating a pregnancy. For example, suppose that a couple plan to
have children, but an unplanned pregnancy has occurred before they feel ready to do so let's say
that at present they are sharing a studio apartment and can-not afford anything larger, but in five years
they will be able to move to a larger home. In my view, they would not be acting unethically if they
decide to obtain an abortion. Now think about the case that Beeson discusses: a couple who are told that the child the woman is
carrying will have a disability. Let's say, since this is the disability to which Beeson gives more
attention than any other, that the child will have Down's syndrome. Like most parents, the couple think
it important to give their child the best possible start in life, and they do not believe that having Down's
syndrome is the best possible start in life. Is it true that this couple must be making the assumption
that "life with a disability is not worthwhile and is primarily a source of suffering"? There is no more
reason to believe that these parents make that assumption, than there is to believe that parents who
terminate a pregnancy because they can't afford a larger apartment believe that "life living as a child in
one room with one's parents is not worthwhile and is primarily a source of suffering." In both cases, all
that the parents need assume is that it would be better to have a child without Down's syndrome, or to
have a child who can have a room of her own. After all, in neither case are the parents choosing
whether or not to have a child at all. They are choosing whether to have this child or another child that
they can, with reasonable confidence, expect to have later, under more auspicious circumstances.
Thus it is possible to justify abortion in these circumstances while accepting Beeson's claims that
people with congenital disabilities "often achieve the same high levels of life satisfaction as
non-disabled persons." A couple may reasonably think that "often" is not good enough. They may also
accept as I do that people with Down's syndrome often are loving, warm people who live happy
lives. But they may still think that this is not the best they can do for their child. It is unfair to suggest,
as Beeson does, that it is "stigma" that leads more highly educated people to wish to avoid having a
mentally retarded child. Perhaps they just want to have a child who will, eventually, come to be their
intellectual equal, someone with whom they can have good conversations, someone whom they can
expect to give them grandchildren, and to help them in their old age. Those are not unreasonable
desires for parents to have.
What of the "powerful message that we seek to eliminate future persons with disabilities" that Beeson
tells us is sent by prenatal diagnosis and abortion to people with disabilities? Her concern seems
highly selective. Every bottle of beer or wine sold in the United States bears the words:
GOVERNMENT WARNING: ACCORDING TO THE SURGEON GENERAL, WOMEN SHOULD NOT
DRINK ALCOHOLIC BEVERAGES DURING PREGNANCY BECAUSE OF THE RISK OF BIRTH
DEFECTS.
Does not that warning much more visible to ordinary Americans than pre-natal diagnosis send
out a "powerful message" that we should prevent the birth of children with defects? What about the
message sent by programs that immunize girls against rubella? And if a person is injured in a motor
accident, and would not be able to walk without extensive surgery, does the fact that she goes ahead
with the surgery somehow "convey a devaluation of those now living with disability"? Have disability
advocates ever called for government to stop sup-porting research into ways of overcoming spinal cord
injuries? No, disability rights advocates focus on only one of the many ways in which people seek to
prevent the existence of people with disabilities and that happens to be the one where the disability
movement can count on active support from the much larger and more powerful anti-abortion
movement. Per-haps that is just a coincidence.
We can and should have equal consideration and respect for people living with disabilities. It does not
follow from this that we must deny the obvious truth that most people, disabled or not, would prefer to
be without disabilities.
Does this mean that we are "drifting toward a eugenic resurgence that differs only superficially from
earlier patterns"? If this is a veiled reference to Nazi pollicies that led to the murder of millions of
people, it is indefensible. No state is ordering anyone's death; no one who wants to go on living is
being murdered; no children whose parents want them to survive are being killed. These are not
superficial differences.
Peter Singer, MA, BPhil
DeCamp Professor of Bioethics University Center for Human Values
Princeton University, Princeton, NJ
1 Singer P. Practical Ethics. Cambridge: Cam-bridge University Press, 2nd ed. 1993; ch. 6.
2 Singer P. Rethinking Life and Death. New York: St Martin's Press, 1994; ch. 5.
Professor Beeson's reply: Peter Singer and I agree that it is important to most parents to give their
child the best possible start in life, and we both affirm the right of a pregnant woman to decide for
herself whether it is best for her to continue a pregnancy or choose abortion.
The main source of disagreement appears to be that Singer is focusing on individual cases while I am
concerned with newly developing norms that may themselves become coercive. This focus on
individual cases fails to recognize the social realities of decision making. Very often, prospective
parents faced with the decision of whether or not to abort, do so only after learning that few
resources(services, educational programs, treatments) are available that might help a child with the
condition in question as well as the parents to have a rewarding life. What Singer does not
acknowledge is that individual choices are very sensitive to social context, including norms and values,
as is illustrated by the fact that the vast majority of prenatal diagnoses and selective abortions
worldwide are carried out, not to prevent serious disorders, but to prevent the birth of females.
Few of those who have gone through prenatal diagnosis followed by a second trimester abortion, or
even those whose test results have been favorable, would compare this process, as Singer does, to
more genuinely preventive measures for protecting the fetus, such as avoiding ingestion of toxic
substances. Preventing a problem is not the same as preventing a person. Prenatal diagnosis is not a
benign procedure. It disrupts the normal psychological process of pregnancy (as Rothman has shown
1 ), requires vast medical resources, and even causes the loss of some normal fetuses.
Singer has ignored my major point, which is that those of us who participate in medical or policy
arenas must question where this strategy of avoiding human imperfection is leading us. We must step
back and look at the expanding range of qualities that can be predicted before birth. When we
encourage placing many more prospective parents in the position of deciding which characteristics in a
fetus are acceptable and which render it unworthy of being born, where are we really going? Wouldn't
we be better off in the long run directing some of these vast resources into broader strategies for
preventing disease and disability that are consistent with an ethic of caring, rather than following the
chimera of human perfectibility?
Diane Beeson, PhD
Chair of the Department of Sociology and Social Services
California State University, Hayward
1 Rothman BK. The Tentative Pregnancy: Prenatal Diagnosis and the Future of Motherhood. New
York: Viking, 1986. -- Marta Russell author, Los Angeles, CA http://disweb.org/ Beyond Ramps: Disability at the End of the Social Contract http://www.commoncouragepress.com/russell_ramps.html