The Bad Gene! The Ethics of Screening and Selective Abortion by Naeimeh Pourmohammadi

When they handed me the ultrasound result, it read: “Severe bilateral hydronephrosis^[1] in both kidneys,” and they ordered an urgent repeat ultrasound and continuation of necessary measures. By “necessary measure,” they probably meant discarding the baby. I didn’t understand much about hydronephrosis. I went home. By then, he had been my baby for weeks. He was my wanted baby. I had been mothering him for weeks, and whatever he was, he belonged to me. I went neither for the repeat ultrasound nor for the necessary measure. When he came into the world, he had six fingers. It wasn’t good news at all. It was a sign; a sign of a genetic disease. His diaper would stay dry, and it turned out that the hydronephrosis they mentioned was correct. The urinary tract was so narrow it wouldn’t allow urine to pass. He had lost his left kidney and half of his right kidney during the fetal period. To save the remaining kidney, we submitted to three surgeries. He didn’t get better. They only found an emergency, temporary way for urine to exit, which later became permanent. We went to doctors as many times as the hairs on his head, from every specialty: endocrinology, cardiology, ophthalmology, nephrology, and orthopedics. I really loved his fingers. Those very sixth fingers on his hands and feet. With his sister, we had made up poems for his fingers, for those sixth ones, and we would recite them to him. By now, he was gradually learning to walk, and no shoe would fit his foot. There was no choice; we were forced to surgically remove the sixth fingers so he could walk comfortably. It was around that time that, at the Tehran Gene Clinic, they finally told us the name of his disease: Bardet-Biedl syndrome.^[2] In these syndromes, everything works precisely like clockwork, according to the calendar that genetics specialists have written for this syndrome: intellectual disability and speech disorder at age three. Night blindness at age eight. Complete blindness at age sixteen, and the possibility of early death before the age of twenty!

Is that it?! Who gave you permission to give me all this information? Did I need this precise calendar? Why did you violate the future life of me and my son with all these minute medical details? Why did you seize control of our private life from before birth? Why, before we, mother and child, had met each other in the real world, did you white-coated specialists hastily judge us and write us a prescription for a necessary measure? The truth is that medicine did not let me enjoy my pregnancy, the moment of my child’s birth, or his infancy, and embittered all those days for me with extra information that I had no urgent need to know at the time. The possibility of enjoyment, the possibility of excitement, the feeling of autonomy, and the thought of having agency—all would have been possible for me if the veil of ignorance between me and reality had not fallen away and reality had not shown me its ugly, cold face. Now I know all my child’s genetic codes and am informed of the minute details of his future. The injustice and discrimination that exist in this process always make me cry out. I still see most mothers who do not know their children’s futures and go to meet the future alongside their children with bright, colorful dreams. Is it fair that they drew a red line through my child’s colorful future file and closed the file before my eyes forever? How good it would have been if I didn’t know! Didn’t I have the right not to know? Now that they gave me all that bad information, why didn’t they give me complete information? Why didn’t someone tell me: You know, but I also have good news for you; your child has a powerful emotional force that can quench you with his affection and empathy; the ability to form relationships with your friends and neighbors; to love your pet dog and cat; to sit at the lunch table and eat happily, to dig in the garden, to accompany you on holiday trips; to delight in sports and dancing with you; and the ability to enjoy everything in this life!

Abortion^[3] did not become a problem for me at that time. Back then, I resolved everything very simply for myself: with maternal love and affection. But now, as time passes and the difficulties of caring for my child increase, and the more I read about this, the issue of abortion reveals its more complex layers to me. Abortion is never a simple, one-dimensional issue, and it cannot be resolved with a one-word answer of "yes" or "no." There is a multi-layered and far-reaching problem here, in which various philosophical, ethical, jurisprudential, legal, social, economic, commercial, political, cultural, feminist, environmental, population policy, medical, technological, cognitive science, historical, linguistic, and other angles are directly involved. When we reach a summation of all these dimensions together, the matter becomes very difficult. I opened with a preface from myself and my experience. I will bring the rest of my words throughout the book and especially at its end.

It has been said that the causes and factors of abortion are not outside of these few: "preserving the mother's life," "preserving the mother's physical health," "preserving the mother's mental health," "fetus resulting from rape or incest," "fetal abnormality," "unsuitable economic or social situation," and "the mother's wish"^[4] and we know that the legal status of abortion in Iran is such that the Islamic Consultative Assembly passed a single article in 2005, according to which "therapeutic abortion with the definitive diagnosis of three specialist physicians and the approval of forensic medicine before ensoulment up to four months and with the woman's consent is permitted in two cases: fetal illness that, due to retardation or congenital defect, causes hardship for the mother, and maternal illness that is accompanied by a threat to her life." Five conditions have also been included in the single article on therapeutic abortion: 1. The fetus has a disability that causes hardship and difficulty for the mother or child; 2. If the fetus is healthy, the mother is ill and maintaining the pregnancy poses a life-threatening risk to her; 3. The abortion is before ensoulment (four full months); 4. The abortion is confirmed by three specialist physicians; 5. The abortion is performed with the mother's consent.^[5]

In Iran, among the multiple factors for abortion, only three factors—preserving the mother's life, preserving the mother's physical health, and fetal retardation—became the basis for the therapeutic abortion law, and other factors did not find their way into the law due to the lack of jurisprudential backing. Permission for abortion in these three situations is also before four months and ensoulment. After four months, abortion is only permitted if the mother's life is endangered (and not the mother's health) and in cases of severe fetal retardation (and not mild retardation). Objections have also been raised against this law, including that fetal and maternal illnesses can be definitively diagnosed after four months of pregnancy, and before that, test results are often not very reliable. The second objection is that the requirements of the single-article law, which demands the diagnosis of three specialist physicians and the approval of forensic medicine, is a time-consuming and difficult process that sometimes takes so long that the legally permitted time for abortion passes. Another objection is that the law states that after ensoulment, one cannot resort to abortion merely due to a threat to the mother's health, because the evil of depriving the fetus of life is greater than the evil of the mother's impaired life, but sometimes the mother, by continuing the pregnancy, falls into a state of very severe illness that is not permissible.^[6]

According to Iranian law, a fetus poses a life-threatening risk and a threat to the mother's physical health if the mother suffers from one of these illnesses: heart diseases that cause heart failure; vascular diseases and high blood pressure; pulmonary diseases accompanied by respiratory failure; kidney diseases accompanied by kidney failure; cancer that requires immediate chemotherapy, especially cancers related to the uterus; brain and nerve diseases such as treatment-resistant epilepsy and various motor neuron diseases if exacerbated by pregnancy; the presence of space-occupying brain masses requiring treatment and surgery; blood diseases; mental illnesses with a high probability of suicide; gastrointestinal diseases including fatty liver of pregnancy; infectious diseases including the AIDS virus; joint diseases including lupus; and advanced skin diseases.^[7]

Also, the permissible instances of abortion due to fetal abnormalities include: orthopedic diseases such as brittle bone disease, disorders of cartilage and bone growth, and abnormal bone density; nephrological and urological diseases such as the absence or inactivity of both kidneys, cystic kidneys, renal agenesis and dysplasia, severe bilateral hydronephrosis (narrowing of the urinary tract from the kidney to the bladder and from the bladder to the external ducts); hematological diseases including alpha-thalassemia^[8] and blood coagulation disorders; diseases including trisomy 3, 8, 13, 16, 18 (a group of syndromes including Down syndrome^[9]); brain diseases such as anencephaly^[10] (absence of the brain), encephalocele^[11] (protrusion of the brain), spina bifida^[12] (protrusion of the spinal cord), schizencephaly^[13] (abnormal clefts within the brain matter), exencephaly^[14] (incomplete skull and protrusion of the brain), holoprosencephaly^[15] (failure of the anterior part of the brain to close), cranioschisis^[16] (cleft skull), meningoencephalocele^[17] (protrusion of brain matter through a skull cleft), severe epilepsy and seizures, and CP^[18] (cerebral palsy); syringomyelia^[19] (muscle weakness and atrophy); limb paralysis; eye disorders; glandular disorders; hydrops fetalis^[20] (fluid accumulation in body tissues); cri du chat syndrome; lethal neonatal dwarfism; developmental defects such as the absence of an eye or nose; ichthyosis^[21] (severe skin disorder involving dryness, stiffness, and thickening of the skin).^[22]

A common type of therapeutic abortion, also known as "fetal reduction," is performed in multiple pregnancies, where, depending on the number of fetuses, one or more are selectively aborted so that the remaining fetuses can fully develop and be born healthy. This is done to avoid intrauterine fetal death, neonatal prematurity, low birth weight, intrauterine growth retardation, asymmetrical fetal growth, twin-to-twin transfusion syndrome, fetal abnormalities, cerebral palsy, various types of mental retardation, and increased neonatal mortality.^[23]

With advances in biotechnology, abortion has also taken on broader instances. For couples who conceive through in vitro fertilization (IVF), specialists use preimplantation genetic diagnosis (PGD) to destroy unhealthy or undesirable embryos and implant only the healthy embryo into the woman's uterus. The procedure is such that after several eggs are fertilized in a special culture dish and reach the eight-cell stage after about three days, these embryos are tested to determine their health; the desirable embryos are implanted, and the rest are discarded. With increasing genetic knowledge, this method might also be used to destroy embryos with other undesirable genetic traits, such as being female, obese, short, having dark skin, being weak against diseases, having low intelligence, and so on.^{[24] Four hundred} thousand surplus embryos are frozen in infertility clinics in the United States and have been left to their fate for reasons such as being unneeded or due to preimplantation genetic diagnosis. Of course, the fact should not be concealed that the rate of embryo destruction in assisted reproduction is actually no higher than in natural pregnancy, where more than half of fertilized eggs either fail to implant in the uterine environment or perish due to other factors. Since the early death of embryos is also abundant and unavoidable in natural reproduction, some see little need to worry about the destruction of surplus embryos produced in infertility treatment or stem cell research for treating diseases.^[25]

In the book The Bad Gene!, I discuss the ethical issues of screening and selective abortion^[26] in the event of fetal abnormality. We know that abortion has various types. In a general division, abortion is either "spontaneous" or "induced." Induced abortion, in turn, results from "accident and violence," is "criminal and penal," or is "therapeutic and induced." Illegal abortion is called criminal or penal abortion, and abortion due to maternal or fetal illness is called induced or therapeutic abortion; abortion of a disabled fetus falls into this category of therapeutic abortion. The name "selective abortion" has been given to it because it involves selecting among embryos with the aim of choosing a healthy and complete child and eliminating an unhealthy and imperfect one. It is clear that this selection is not always about the physical health of the fetus. Sometimes selective abortion is performed for selecting superior intelligence, taller height, greater attractiveness, and superior sex (usually male), which is not the subject of my book. In this book, I mostly speak of selective abortion in the event of fetal defect, but the discussion may, in places, extend to other selections as well.

Before entering the specific discussion of abortion of disabled fetuses, I speak about abortion in general terms. In this part of the book, I review eleven arguments from those who say yes to abortion and eight arguments from those who say no to abortion. I have gathered these arguments mainly from available Persian sources. Proponents mainly emphasize the woman's right to choose,^[27] and opponents largely emphasize the fetus's right to life.^[28] In fact, it is these two rights that compete in the matter of abortion. The eleven arguments of those who say yes to abortion are: the "right to choose" argument, the "woman's ownership of her own body" argument, the "denial of fetal personhood" argument, the "indirect consequence" argument, the "self-defense" argument, the "liberation from male oppression" argument, the "population control" argument, the "environmental protection" argument, the "danger of unsafe abortion" argument, the "rejection of discrimination" argument, and the "prevention of the growth of criminality" argument. The eight arguments of those who say no to abortion are: the "intrinsic value of human life" argument, the "waste of capital" argument, the "potentiality" argument, the "species essence" argument, the "identity" argument, the "brain activity" argument, the "sweetness of life" argument, and the "acceptance of responsibility for one's actions" argument.

When I enter my main discussion, namely selective abortion in the case of fetal abnormality, I will present all the arguments of both proponents and opponents. In this section I have read several primary sources, and all of the structure, order and system, titling and formulation, whether in the proponents' arguments or in the opponents' reactions, is my own effort. Previously, there has been no precedent for such discussions in Persian. Proponents argue through six avenues: "the right to choose," "reducing human suffering," "the primacy of quality of life," "wrongful births," "the extra and heavy burden," and "replaceability." Opponents call these arguments into question from various ethical, genealogical, social-philosophical, linguistic, feminist, and disability-studies angles. Opponents then try to reform our attitude toward selective abortion with the help of three ethical approaches: narrative, care, and virtue. Finally, opponents propose practical solutions: from identity-giving to disability movements and the ethics of genetic counseling, and an invitation to reflect on the philosophy of childbearing and the gift of nature.

The book does not end with the views of proponents and opponents of selective abortion; rather, there is a middle way that draws a line between severe and mild disabilities and permits abortion only in the case of severe abnormalities. The line-drawing approach itself has its own advantages and shortcomings.

In the end, I also speak my own mind: "natural selection." In short, what I want to defend is that perhaps the difficult task of decision-making and line-drawing can be left to nature itself. Nature, without medical and technological intervention, with its intelligent and precise mechanism, chooses far better and more calculatedly than we do "who should live in this world and who should not!" In its completely untouched form, nature's work is such that if an abnormality exceeds the level that nature recognizes, it ends in death during the embryonic period or at birth; that is, natural selection. Natural selection has a very simple and tried-and-tested test in which error is impossible: "adaptation to the environment." If the fetal abnormality is severe and disrupts its adaptation to the environment of the womb or outside it, nature will not hesitate and will show no mercy. In the process of the "struggle for survival," it selects the "fittest" organism and will naturally eliminate the organism incompatible with the environment. It is better to return nature's ruler, which we have forcibly usurped for some time now with the advancement of medical science, back to nature itself. The ruler in the hands of a living, intelligent, harmonious, and orderly organism leaves little room for error. To further explain my desired answer, I have employed principles from medical ethics: "the right to refuse treatment," "withholding futile treatment," "do not resuscitate," "no assisted dying," "palliative sedation," and "end-of-life care."

In the concluding remarks of my book, I defend the "right to feel bad." People also have the right to feel bad. People have the right to become sad, the right to become ill, the right to suffer, the right to become depressed, and the right to experience feeling bad; rights that medical technology, especially screening and selective abortion, wants to take all away from human beings and create humans who, under the pretext of having a healthy body and avoiding illness, are deprived of each and every diverse experience, colorful state, and the abundant and rich emotions they could undergo. The bottom line of modern sciences, especially medicine, is that everyone must be happy, even if by force. No one has the right to misery, the right to failure, the right to endure suffering, and the right to experience tragedy. Medical technology, by preventing the birth of sick and unwell children, has promised to build us a Brave New World. Oblivious to the fact that the perception of tragedy is the pinnacle of life. Anyone who does not grasp this pinnacle in life cannot claim to have truly lived. My point, in a word, is that I have the right to feel bad, and my child has the right to a bad gene!

I thank my friends in the religious studies reading group at the University of Religions and Denominations, who, from the very beginning of my research in disability studies, always listened eagerly to the various parts of my readings and writings that I presented in their presence, and shared their perspectives with me. I previously presented the outcome of this book at a gathering at the House of Young Ethicists on the occasion of the International Day of Persons with Disabilities, in the Applied Ethics Group at the University of Quran and Hadith in the form of a scientific-promotional chair, and at the library of the Faculty of Theology at the University of Tehran. I also presented most of the content of this book to the students of the Philosophy of Ethics Department at the University of Religions and Denominations under the course title of Bioethics. I am also deeply grateful to Dr. Alireza Alebouyeh and Dr. Seyyed Hassan Eslami Ardakani, who are pioneers in the ethics of abortion in Iran and who, with kindness and humility, participated in my lectures, and I benefited greatly from their writings and words in my work. I am also most appreciative of Dr. Alireza Salehi Sadati and other dear colleagues at Taha Publications.

And as for giving thanks for the birth of Amir Ali, it is my daily and nightly remembrance. I have always said that with his birth, he pushed the darkness away from before my eyes. My eyes were illuminated.

Naeimeh Pourmohammadi

Assistant Professor of Philosophy of Religion, University of Religions and Denominations, Qom

Spring 2020

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[1]. hydronephrosis

[2]. Bardet–Biedl syndrome

[3]. abortion

[4]. Mirshams Shahshahani and Aghaeinia, "Developments in Therapeutic Abortion Regulations in Iran and an Examination of the Shortcomings of the Single Article," p. 129.

[5]. Madani and Jahangiri, "Types of Abortion and Medical Considerations," p. 41.

[6]. Asef Agah and Rezania Moallem, "Necessity as a Rule and Its Impact on Therapeutic Abortion," pp. 119-120.

[7]. Mohammadi Vahidi, "Legal Aspects of Abortion," pp. 492-494.

[8]. Alpha thalassemia

[9]. Down syndrome

[10]. Anencephaly

[11]. Encephalocele

[12]. Spina bifida

[13]. Schizencephaly

[14]. Exencephaly

[15]. Holoprosencephaly

[16]. Cranioschisis

[17]. Meningoencephalocele

[18]. cerebral palsy

[19]. Syringomyelia

[20]. Hydrops fetalis

[21]. Ichthyosis

[22]. Ma’dani and Jahangiri, “Types of Abortion and Medical Considerations,” pp. 45-49; Saeidi Borujeni and Bahrami, “Abortion as a Method of Preventing Severe Congenital Anomalies,” pp. 66-68.

[23]. Shiva and Arabipour, “Selective Reduction of Fetuses in Multiple Pregnancies,” pp. 274-276.

[24]. Habermas, Genetic Engineering and the Future of Human Nature, pp. 30-38.

[25]. Sandel, The Perfect Human Being, pp. 120-124.

[26]. Selective Abortion

[27]. Prochoice

[28]. Prolife

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Year of Publication: 2020 Author: Naeimeh Pourmohammadi Publisher: Ketab-e Taha Edition: 1st Number of Pages: 232 Language: Persian

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Online Purchase from Taha Publishing Website

PDF File of the Preliminary Pages and Introduction of the Book The Bad Gene

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