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Introduction

This book is for individuals and couples who are—or may sometime be—considering assisted reproduction. It is also for professionals—physicians, nurses, mental health clinicians—who work with such couples. The decisions that confront you are difficult and multi-faceted, involving med­ical, psychological, emotional, financial, ethical, moral, practical and religious questions. Although some may find the decision making process relatively straightforward, many of you will struggle through a complex, unfamiliar and challenging exploration of yourselves and the world around you. We want you to know that your struggle, though painful, will most likely prove valuable in helping you move forward with confidence in the rightness of your decisions.

Many of you have already travelled a long way in your journey through infertility diagnosis and treatment. It must be hard for you to imagine forg­ing onward when the path has already been so tiring. Others, by contrast, are relatively new travelers, having learned through a semen analysis, laparoscopy or other single diagnostic test, that you are candidates for assisted reproductive technology. It is probably difficult to find yourselves so suddenly on the border of this “brave new world” of assisted reproduc­tion. Still others of you are not yet at the point of considering assisted reproduction, but want to look ahead so you can feel more familiar with what may be on the horizon. Choosing Assisted Reproduction is for all of you—we hope that it will provide you with a foundation from which you can approach a range of questions and decisions.

Before introducing you to the format, themes and content of Choosing Assisted Reproduction, we want to tell you something about how and why this book came about. Choosing Assisted Reproduction began as a simple “up-date” of our 1994 book, Beyond Infertility: The New Paths to Parenthood. As we noted in the introduction of Beyond Infertility, reproductive technology is a rapidly changing field and information is becoming out-dated almost by the time a book on the subject is published. For example, just as this book is going to press we are hearing reports about a birth—the first of its kind—of a baby conceived in vitro with cytoplasm from a donor egg, resulting in a child that has both parents’ genetic components. This technology is too new, however, to share it with you now, but may ultimately result in significantly fewer (primarily older) women requiring donor eggs in order to conceive. And so we set out, in 1996, to make Beyond Infertility more current, believing that new medical information was all that was needed to provide patients with an instructive guide to decision-making regarding assisted reproduction.

The task of updating was fairly easy. However, as we scrutinized each chapter we became aware of how much our own thinking had also become updated and was not reflected in the printed word. In the last few years our thoughts, opinions, and ethical beliefs had become more defined. We also felt more convinced of the soundness of our beliefs and felt more secure about sharing them straightforwardly with patients and with professionals. Thus we decided to expand two important parts of the original book—ethical considerations and disclosure to children—and create two new chapters, the first and last chapters of Choosing Assisted Reproduction.

Chapter One, “Ethical Considerations in Assisted Reproduction,” is not “easy reading”—it is difficult enough for infertile patients to deal with medical decision making without having to confront serious ethical and psychological concerns. Nevertheless, these concerns exist alongside the array of medical options and it is our hope that by introducing them at the beginning, we provide readers with a framework and reference points to draw upon as they make their way through the medical maze.

The medical process can feel daunting, and yet medical information is essential to sound decision making in infertility treatment. Because we know how overwhelmed patients can feel when they are introduced to an alphabet of ART options—IVF, GIFT, ZIFT, ICSI etc., we have tried to present medical information in a simple—though not simplistic—way. Our hope is that after finishing Chapter Two, readers will feel well versed in the basics of assisted reproduction, knowing what questions to ask their physicians, and knowing how to evaluate their responses.

Although all individuals and couples undergoing assisted reproduction do not become pregnant, many do. We have found that few feel prepared for the stress and the uncertainties of pregnancy after assisted reproduc­tion. For that reason, we have devoted Chapter Three to Pregnancy after ART, including a lengthy section on pregnancy loss. Perhaps more than any other chapter in this book, this chapter attempts to diminish isolation. We want our pregnant readers—and those who have experienced a loss—to know that they are not alone as they make their way through this exceed­ingly difficult journey.

The first part of Choosing Assisted Reproduction concludes with Chapter Four, “Moving Forward: Changing Directions.” We include this chapter in recognition of the fact that many of our readers will come to a point at which they must make some extraordinarily difficult decisions regarding ending treatment and moving on to a second choice (and some­times third choice) path to parenthood. Once the possibility of introducing another person—either as a gamete donor, a gestational carrier, or a surro-gate—comes into play, ethical and emotional challenges multiply exponentially.

The second part of Choosing Assisted Reproduction is devoted to third party parenting options. Five of these chapters deal with a specific “third party” option: sperm donation, ovum donation, surrogacy, gestational care and embryo donation. We encourage you to read beyond the chapter or chapters that relate directly to your personal situation, as all these options, though different, share common ground. This common ground involves the meaning and relative importance of genetic, generational, gestational and parenting ties. It includes ethical questions involving the best interest of offspring and the rights of people to reproduce.

Choosing Assisted Reproduction ends with what we hope will be a beginning: a strong argument for openness with one’s children—i. e. the right to know the truth about one’s genetic origins. We also provide some guidelines and suggestions about how to do so. We hope that potential parents—most importantly those who are reproducing with the help of third parties—will enter treatment with the concept of openness as a bottom line. We hope that the foundation offered in Chapter Ten will reassure you that you are not alone and that you, together with other pioneering parents, will be establishing a sound path for future generations.

Choosing Assisted Reproduction was a difficult book to write, and for many it may be a difficult book to read. The first part of the book is diffi­cult because we speak freely and openly about the various challenges asso­ciated with undergoing assisted reproduction, as well as pregnancy after assisted reproduction. We do not paint a rosey picture, but rather, acknowl­edge that there are tough decisions to be made and sometimes, tough experiences to endure. Sadly, all the hard work and wise decisions in the world cannot insure a successful pregnancy, and many people will have to make a second choice regarding family building.

As difficult as the first part of the book is, the second part is probably even more challenging. We know that many would-be parents, regardless of whether they have struggled with infertility, believe strongly that the power of their love can transcend all difficulties. Although love may indeed be the most important ingredient in raising children, it is necessary, but not sufficient for psychological health. Those who pursue third party parenting not only confront a series of financial, medical, social, psychological, and logistical hurdles, but they must also confront the fact that their children will have questions, and possibly unsettling feelings about the way that they entered their families. They must also confront the fact that “keeping it a secret” in hopes of avoiding problems for the child(ren) will most likely lead to even more serious ones for everyone in the family.

Lest we sound too “down,” we want to assure our readers that each of us knows countless happy, thriving families who were created by assisted reproduction and by third party parenting. These families are what make our work so satisfying—they are living testimony to the true miracle of creation. Unlike our first book, Without Child, this book is not told through personal accounts. However, the words, the smiles and the stories of the families we have known infuse this book. You will not see their names or faces on the pages ahead, but please know that they are in the background, encouraging you onward. Virtually all would tell you that the outcome makes the struggle worthwhile.

Although we have tried to pack a lot into this book, there are some things that are missing. We want to acknowledge them at the outset so that you are not looking for them. First, you will notice that we do not discuss adoption. Nor do we discuss resolving infertility without children. Although both are paths successfully pursued by infertile couples, they are not explored in this book because our focus here is on assisted reproduc­tion. However, our assumption is that some of our readers will move on to one of these options, either because they decide against assisted reproduc­tion and/or third party parenting or because they try one or more of the options discussed here and do not successfully complete their family. We want you to know that we are in no way dismissing either of these options, each of which proves to be the right path for many infertile couples. We encourage couples to read Adopting After Infertility by Patricia Irwin Johnston and Sweet Grapes, by Jean and Michael Carter.

Second, there are several infertile constituencies that are not addressed directly in this book. Again, we want you to know that this book is for you, but in the interest of space and language we have not included specific discussion of your situations. One such constituency are single women who are pursuing pregnancy without partners. A second group are lesbian couples, and a third group are those who are struggling with secondary infertility. Although members of each group have some unique experiences and concerns, we feel that nearly all of what we have addressed to the presumably childless, heterosexual couple applies to you.

Third, we do not discuss extended family, most importantly, grandparents. Again, this is an issue of space. We are keenly aware of the pain felt by the parents of infertile couples and know that the years spent in pursuit of pregnancy often rob families of precious grandparenting time. All too often, would-be grandparents are older—and perhaps in ill health—by the time their long awaited grandchildren arrive.

In addition to these grandparents, we want also to acknowledge the potential for loss and pain felt by parents of surrogates and gamete donors who may truly feel that they are experiencing the permanent loss of a grandchild or children.

You, our readers, are pioneers. The territory you are exploring—or are about to explore—is still new and the path ahead may sometimes be difficult to find. We hope this book helps you to chart your own course and to identify and follow the paths to parenthood that are right for you.

1:Emotional and Ethical
Considerations of Assisted
Reproductive Technology

The book of Samuel in the Old Testament tells the story of Elkanah, a pious man who has two wives, Hannah and Peninnah. Peninnah has many children, but Hannah, his more beloved wife, is barren. Peninnah taunts Hannah, saying that the Lord has closed Hannah’s womb. Hannah weeps and cannot eat. Elkanah says,“Hannah, why weepest though? And why eatest thou not? And why is thy heart grieved? Am not I better to thee than ten sons? ” Later Hannah prays to the Lord and weeps again, vowing that if the Lord gives her a son, she “will give him unto the Lord all the days of his life...” As Hannah is praying, Eli, the priest, watches her lips moving soundlessly. He assumes that she is drunk and asks her to put away her wine. Hannah speaks intensely: “I am a woman of a sorrowful spirit: I have drunk neither wine nor strong drink, but I poured out my soul before the Lord.”

Although the Old Testament is replete with references to infertility, the story of Hannah is especially important because it illustrates the timelessness of the emotions that surround infertility. We see in this short passage the pain of an infertile woman, overcome with despair. She is so saddened by her condition that she is unable to eat, and she cries continuously. Furthermore, she is pained by and jealous of the fecundity of her rival, who appears insensitive to her condition. Her husband, Elkanah, feeling helpless and desperate to make her happier, attempts to use logic to help her feel better. Like many of today’s husbands, he cannot understand why his love of her, and the special attention he gives her, is not enough to make her happy.

Today’s infertile couples walk in Hannah and Elkanah’s shadows. They, like their biblical counterparts, struggle with feelings of isolation, envy, helplessness, and despair. Like Hannah and Elkanah, they may feel misunderstood by their spouses. Like Hannah, infertile women may feel their sense of womanhood mercilessly assaulted. And many turn, as Hannah did, to prayer. Theirs is a centuries old anguish that has been described and re-described throughout history, but was probably best captured in the words of another biblical woman, Rachel, when she exclaimed, “Give me children or I die.” Today’s infertile couples share the intense longings of Hannah and Elkanah and of Rachel and the many other biblical figures who struggled with infertility.

Yet today’s couples travel a very different journey than their coun­terparts from any prior generation. Even recent generations had few medical interventions to which they could turn. In contrast, today’s weary travelers make their way through a complex and confusing medical maze. Although some are fortunate to respond to conservative treatment and bear children along the way and others decide to take different paths to parenthood, many find themselves approaching the unfamiliar terrain of the assisted reproductive technologies. This terrain may necessitate difficult, complicated, and ethically challenging deci­sions that may even involve third or fourth parties in the parenting experience. In this chapter—and in those that follow—we will take a look at this unexpected journey. We will focus on the emotional bur­dens and ethical challenges that await couples who consider and/or pursue assisted reproduction.

Today’s infertile couples not only experience the emotional burden of infertility, but they must also confront myriad ethical challenges that accompany the new technologies. Because the emotional and ethical dilemmas are entwined, we present them together in this chapter. To do otherwise would be to suggest that they can easily be separated. They cannot. For unlike in biblical times when there were few third party parenting options and there was no medically assisted reproduc­tion, infertile couples today must endure not only the emotional pain of infertility, but they must also grapple with profound ethical dilemmas posed by high tech treatment.

In this chapter we outline the new dilemmas—both ethical and emotional—imposed by the new technologies. We will see that although the feelings infertile men and women experience are time­less, there is also a timeliness to the ways in which these feelings are perceived and resolved. We will see, also, that while advances in repro­ductive technology have offered new hope to countless couples, these advances have also complicated their experience of infertility, adding new—and perhaps deeper—dimensions to a couple’s suffering.

Principles of Medical Ethics

Each of us has a code of ethics that guides us in our daily lives. Most of the time, however, these personal ethical guidelines are not something we think about consciously. Rather, they are there—in the background—for us to draw upon as needed. Occasionally situations arise in all our lives which force us to look more closely at our personal ethics. When this occurs, we become aware of the principles that guide our actions and reactions. We also realize that we each have ethi­cal lines that we are unwilling to cross.

Exploring assisted reproduction prompts most people to confront their personal ethical principles and to ask themselves difficult ques­tions. “Can I do this and if not, why not?” “Can I live with the decision to...?” “Would this decision be 'in the best interests of the child' or would it be a selfish decision?” For many, this questioning is an unfa­miliar process and one that they find unsettling. After all, nothing could be more natural and more ethically correct than to want a child: why then, is it so complicated? In fact, the ARTs and certainly, third party reproduction raise profound ethical questions for all of us and force us to carefully consider what it means to create families in new ways.

Although personal ethics cannot necessarily be codified or even described, it can be helpful to know the central principles of medical ethics. This time honored and widely accepted ethical code, which has governed the practice of medicine for centuries, provides each of us with a framework upon which we can examine and understand our reactions to complex ethical questions. We will introduce this code through its three central principles: autonomy, beneficence and justice. Among ethicists, the first principle, autonomy, is frequently determined to be the most important, in the event of a clash between two of the principles.

Autonomy places value on human beings and on their right to make decisions regarding their own welfare, providing that those decisions do not infringe on the rights of others. In medical ethics autonomy refers to an individual’s right to receive accurate information about his/her medical condition and the range of treatment possibili­ties. Furthermore autonomy gives patients the right to refuse or deny treatment that is offered. Beneficence refers to the concept of doing good—performing acts of kindness to others. The concept of benefi­cence also includes a duty to avoid harming a person or to prevent harm from happening to another. The third principle, justice, refers to a belief in the equal distribution of society’s benefits and burdens, i. e. the concept that everyone should be treated fairly and receive what he/she needs and deserves.

Helping couples to become parents through the use of reproductive technology can be viewed as an effort that supports all three princi­ples. It supports autonomy if couples are given the information pertaining to their situation and the power to make decisions regarding their treatment. It supports beneficence when a long sought-after goal—parenthood—is achieved and a new life is created (a concept that has historically been viewed by ethicists as positive). It supports the concept of justice when all who are in need are able to avail them­selves of the technology. (Unfortunately because few states regard infertility as a medical condition, many couples do not have access to necessary treatment due to financial constraints.)

Inevitably there are occasions when the promotion of one principle clashes with the promotion of another. Most commonly this situation arises when autonomy collides with beneficence—when a patient opts for a particular treatment that his/her provider believes may do harm to the patient (or in the case of reproductive technology, to a potential child) and the provider does not wish to offer the treatment. In these situations, one principle must be compromised for the sake of the other. Most frequently, in medical situations, autonomy is granted first. However, as we shall see in this chapter, when the lives of potential children are at stake, it is not clear who should make final or ultimate decisions and what information should influence those decisions.

In this chapter we identify three concepts influencing decision making—the separate components of parenthood, unnatural concep­tion, and avoidance of regret—that pose difficult dilemmas for infertile couples considering assisted reproduction. Although these concepts existed to some degree even before the development of ART, they have become prominent in current times. As we discuss the ways in which the new reproductive technologies have influenced an infertile couple’s emotional outlook, we will describe these concepts—and dilemmas—along with the ethical questions that have arisen with them.

The Separate Components of Parenthood

As anyone who has ever experienced infertility can attest, infertility involves multiple losses. From the first moment that an individual or couple realizes that they are having difficulty conceiving or carrying a child, they are confronted with loss. As the experience of infertility continues, many losses come cascading towards them: loss of self-esteem, loss of body integrity, loss of privacy, loss of sexual pleasure, loss of time, loss of money, loss of comfort in friendships and family relationships, and the loss of spontaneous conception. Furthermore, couples—especially those who reaped rewards from hard work and effort—begin to feel they are losing control over their lives. Infertility threatens their ability to plan for the future and to know where they are going.

In addition to the losses mentioned above, today’s infertile couples are threatened by the possibility of losses involving basic structures in their lives. These may include threats to the future of their marriage, threats to their relationships with others, threats to their religious faith, and threats to their careers. Managing these primary structures becomes of paramount importance, since the stakes, in each instance, are high.

What’s more, infertile couples are threatened with losses that are directly related to reproduction and parenting: the loss of the preg­nancy experience, of a genetic connection to one’s offspring, of continuity with one’s bloodline, of conceiving a child jointly with one’s beloved spouse, and of parenting itself. It is these losses that are most distressing to infertile couples and it is also these losses that have been directly impacted by advances in reproductive technology.

For the first time in history, as an outgrowth of in vitro fertilization technology and research, the three components of parenthood—the genetic, the gestational, and the nurturant—can be separated, so that the loss of one does not necessarily result in the loss of the others. For a man or woman who may not be able to conceive a child genetically connected to him or her, ovum donation or sperm donation offers the opportunity for gestation and parenting of a child genetically con­nected to half of the couple. For a woman unable to carry a pregnancy to term, gestational care may be the alternative of choice. For couples who cannot provide egg or sperm, but who wish to experience preg­nancy, embryo adoption may be an alternative route to parenthood.

Reproductive choices are not made easily. As couples near the end of their biological options, most contemplate—if only for a split second—what it would be like not to be parents at all. If they decide that raising children is their primary goal, they begin to think about alternative routes to parenthood. The array of adoption and third party parenting options available challenges couples to examine the relative importance to them of gestational vs. genetic connections. Prospective parents must think carefully about what it would mean to them to be a parent without experiencing pregnancy, or a parent with no genetic connection to their child. Others contemplate what it would be like not to be parents at all.

Pregnancy and Childbirth Experience

The observation that women and men experience infertility in dif­ferent ways is something that has long been known by infertile couples and their caregivers. This phenomena has been studied by several researchers. Women have been found to experience significantly more psychological distress than do their partners, especially in the areas of depression, anxiety, cognitive disturbance and hostility. Researchers suggest that these findings can best be explained by differences in expectations about motherhood and fatherhood.

For women, expectations of motherhood begin with pregnancy. For many, the threatened loss of pregnancy and childbirth represents an immense loss. They report having looked forward for many years to growing a baby inside them—to feeling its movement within their womb and experiencing its birth during labor and delivery. Some find the thought that they might never have this experience unfathomable: it fills them with profound sadness. Thus, for some women pregnancy feels like an essential life event, one that cannot be missed. Without it, many fear that they will feel permanently and powerfully damaged. It is common for women to blame themselves when they learn about their infertility. Those who delayed parenthood, were sexually active, or had abortions may identify these actions as the cause of and the punishment for their infertility. However, even women who cannot remember anything specific they did “wrong,” may still blame them­selves, fearing that God is punishing them for some unknown transgression.

The threatened loss of the pregnancy experience can be especially difficult and challenging for those couples in which the man is the identified patient. In these instances established gender differences in reactions to infertility are altered. In his1992 study, Nachtigall¹ found that the gap between men and women’s responses to infertility nar­rows considerably when the man is the identified patient. Although the men in the study spoke of the threatened loss of parenthood, only the men with male factor spoke of a concurrent loss of self esteem. Thus not only do infertile men have to bear the potential loss of being genetically connected to their offspring, and the emotional pain that realization brings, but they invariably feel guilty for depriving their wives of a pregnancy.

Genetic Connection to One’s Offspring

Prior to the arrival of assisted reproduction, the loss of the preg­nancy experience was inevitably coupled with the loss of genetic continuity. The development of in vitro fertilization meant that a woman could become pregnant via an egg from another woman (a donor) or with an embryo donated from another couple, and she could parent the child she gestated. Furthermore, some couples can now parent their genetic children (with the assistance of a gestational carrier) even when they are unable to go through pregnancy and child­birth together. Because genetics can now be separated from gestation, many infertile couples weigh these losses carefully and make choices based on which losses are more tolerable for them.

For a man, whose only connection to his unborn child is a genetic one, this loss may be crucial. For a woman, the loss of a genetic con­nection to her offspring may or may not seem to be central. A study performed at the University of Chicago asked women if they could only be related to their offspring either genetically or gestationally, which would they choose. Fifty-one percent chose gestation over genetics. ² In an informal study at Reproductive Science Center, Waltham, Massachusetts, approximately sixty-five percent chose genetics) What is important to note is that many people are guided in their second choice routes to parenthood by their feelings and longings regarding genetic versus gestational ties.

A genetic connection to one’s offspring involves two components: the transmission of one’s genes and the continuation of one’s blood­line. Genes are the building blocks through which traits and characteristics are passed on to one’s offspring. Many people fantasize, even prior to conception, about what their children will look and be like. They think about which traits they want to pass on and which traits they hope their offspring will be spared. Couples also think about blending their genes—creating a child who is the combination of the two of them and many see this child as the greatest expression of their love. Couples facing infertility are saddened to think they may not be able to look at their offspring and see parts of themselves reflected back—or parts of their grandparents or greatgrandparents.

For others, genetic connections represent ties to their individual blood lines. These individuals long for genetic offspring to carry on the family line, connecting generations past to generations future. The inability to have genetic children means the loss of this geneaological continuity, and for many couples, especially those whose families were rooted in strong ethnic or religious traditions, this loss is profound.

There is another reason why a genetic connection is important to many people: genes determine a great deal about a person. Although the exact formula of the nature/nurture debate has not been (and may never be) settled, it is increasingly understood that genes play a major role in who we are. Genes are responsible not only for physical traits and talents, but they are also a large determinant of personality and temperament as well as our abilities (or lack of abilities). A predisposi­tion towards mental health (or mental illness) is also thought to be genetically determined, although no one working in the mental health field would dispute that environment is a major factor as well. Many people seek the familiarity and security of having a child who shares their genes.

Parenting Experience

In the past, couples who faced childlessness frequently opted to adopt. Adoption was a means of avoiding the loss of the parenting experience, which to many would have been intolerable. Today, when faced with this same loss, many—perhaps most—couples consider adoption. The decision to adopt, however, has become more compli­cated with the arrival of third party parenting options and with recent changes in adoption practice, including movement towards greater openness and acknowledgment of birthparents’ rights and ties to their birthchildren. Couples who may once have chosen adoption with relative ease, because they knew they wanted to be parents, now move more cautiously. Tempted by third party parenting choices which may appear to offer more control, or frightened by negative media attention to adoption, many would-be parents struggle painfully before deciding to adopt. Their struggle prompts them to carefully examine the relative importance of genetic, gestational, and parenting ties.

The Separate Components of Parenthood: Ethical Considerations

“Just because we can do something, should we do it?” This is a question that has plagued scientists in the last half of the twentieth century. The field of reproductive medicine in particular has faced this question—perhaps more than any other field. The array of parenting options afforded by reproductive technology is staggering. The devel­opment of in vitro fertilization has made it possible for one child to have as many as five different “parents”—an ovum donor, a sperm donor, a gestational carrier, and two adoptive (rearing) parents. Furthermore, cryopreservation of sperm and of embryos has enabled people to preserve their potential fertility almost indefinitely. Cryopreservation of embryos has even enabled posthumous mother­hood to be possible. The new parenting paths—and configurations— raise a profoundly difficult and often disturbing ethical question: Is it in the best interest of children to be created and parented through third, fourth, or even fifth parties?

The Right to Reproduce vs. the Rights/Best Interests of Children

Until recently, a couple’s right to procreate has rarely been ques­tioned. However, because of the new reproductive technologies, the question has arisen about whether the right to procreate includes the right to procreate using available technology and/or donor gametes or a host uterus. Many experts in the field, including John Robertson,

a U. S. attorney/ethicist specializing in the field of reproductive technol­ogy, argue for procreative liberty, asserting that since the United States Constitution affords people the right to procreate coitally, it also gives individuals the right to procreate non-coitally. Robertson believes that having children satisfies basic biologic, social, and psychological drives for many people and that “noncoital reproduction should thus be con­stitutionally protected to the same extent as is coital reproduction, with the state having the burden of showing severe harm if the practice is unrestricted.”³

Those who believe in procreative liberty would agree, however, that although the law gives people the right to reproduce, it does not give people the right to parent the children they reproduce if they are deemed unfit. Unfortunately there are many instances in which the State, acting in the best interest of a child, removes that child from its home because the child is determined to be at risk. Furthermore not everyone is eligible to become a parent through adoption. Several states have outlawed private adoptions and require parents to “pass” a homestudy conducted by a licensed social worker before they can legally adopt a child. Thus the purpose of the law is to protect children from harm—both physical and psychological—and the duty of the State is to advocate for the welfare of children. The question here is whether or not someone should be advocating for the rights of chil­dren who are not yet born or conceived, and whether we can know— even prior to conception—whether a child will be psychologically harmed as a result of the circumstances of its conception or birth.

There is a great deal of controversy about whether caregivers—from physicians to mental health clinicians—have an obligation to act as gatekeepers for unborn children. Procreative libertarians argue that the role of providers is to offer the technology if it is medically appropri­ate, rather than to make judgments about who deserves to become a parent or about how children should be created. This group of care­givers believes steadfastly in patient autonomy, in each person’s right to choose whether and how to procreate. Others feel strongly that when individuals/couples ask for assistance in procreating, caregivers then have an obligation to protect the interests of children (even if they are not yet born or conceived). They argue that not to do so would be abdicating their responsibility and could even be a violation of beneficence (assuring good and avoiding harm) if the caregiver sincerely believes that harm may be done.

Another ethical question arises from the ability to separate genetic from gestational from rearing parenthood: Is it is moral to create children from donor gametes when there are already children in the world who have been born and who need homes? Elizabeth Bartholet, an attorney, adoptive mother, and author of Family Bonds: Adoption and the Politics of Parenting (Houghton Mifflin, 1993) is critical of the new reproductive technologies. She believes that ART clinics intentionally attempt to convince couples that reproduction in one form or another is inherently better than adoption and that families created from genetic ties (or partial genetic ties) are stronger and more desirable than those created by adoption. Bartholet argues that what she sees as objective counseling would surely steer more infertile cou­ples away from technological means of reproduction to adoption. In fact many infertile couples do struggle with this issue. Longing for a gestational and/ or genetic (or partial genetic) connection to their off­spring, yet aware that too many children in the world need good homes, many prospective parents wonder if this longing to reproduce should take precedence over the right of existing children to have loving homes.

As we will see in Chapter 7, the ability to separate genetic from ges­tational motherhood means that offspring can be born (and have been born) to women old enough to be grandmothers and great-grandmoth­ers and who are likely to die before their children reach adulthood. The use of anonymous sperm or egg donation means that children may have several half siblings that they do not know. Furthermore, the separation of genetic and gestational motherhood may mean that a couple who have donated frozen embryos has several biogenetic chil­dren who are being raised by different families, and who know nothing about each other’s existence. These are but some of the ethical and psycho-social dilemmas brought about by the new reproductive technologies—dilemmas that couples face as they consider their parenting and treatment options.

The Right to Information Regarding One’s Genetic Origins

The history of gamete donation in the United States began in the late 1800s. Dr. William Pancoast, who performed the first insemination of donor sperm, claims to have done it secretly, not ever telling his patient that she had been inseminated with a donor’s sperm, and not telling her husband until after the fact. Thus began a tradition of secrecy that most donor couples have practiced for almost a century— telling no one (neither the child, the child’s physician, nor the extended family, etc.) the circumstances of the conception. Anonymity—the situation in which both donor and recipient couple consent to the process but are unknown (and unidentifiable) to each other—has occurred along with secrecy in donor insemination.

A third concept—privacy—is often confused with secrecy. Privacy refers to the fact that each of us has the right to establish boundaries between ourselves—or our families—and others. When we identify these boundaries we are not being secretive, but rather, we are saying that it is our basic human right to maintain some separateness from those around us. Hence, we are being neither dishonest nor deceptive nor withholding if we do not tell everybody, everything.

The Right to Procreate with Unknown Gametes

Although sperm donation has been occurring for over one hundred years, improved technology, resulting in the ability to separate gesta­tional and genetic motherhood, has paved the way for ovum donation as well. Although few people in the medical and mental health fields have openly questioned the moral acceptability of gamete donation, it does raise an important ethical question: Is it morally acceptable to bring a child into the world with an unknown genetic parent?

This issue may be more timely now because our understanding has deepened in recent years about the relative weight of nature versus nurture in determining who a person will ultimately become. Although scientists are not quite ready to map the human genome, more and more information about biological destiny is unfolding on an almost daily basis. Because we now understand that genetics plays a very large role—larger than previously thought—in providing a blueprint for adulthood, the ethics of bringing a child into the world with unknown genetic origins is more questionable today than it was in the past. The concern is whether it may be psychologically or medically harmful to a person to have no information—or little information—about his/her genetic make-up. On the other hand, to deny a would-be parent the right to chose to procreate with donor gametes threatens both the patient’s autonomy and his/her reproductive freedom.

The Right to Know the Truth about One’s Genetic Origins.

Knowing the truth about one’s genetic origins and conception is different from having identifying information about one’s genetic parents. As long as the practice of anonymous sperm donation contin­ues in this country and the laws surrounding it do not change, donor offspring will not have access to their donors. Although many sperm banks are currently providing extensive information to parents regard­ing their donor’s medical and psychological history, most couples using DI in this country are still choosing not to tell their children the truth about their origins. In recent years a large body of mental health pro­fessionals, including family therapists, have begun to question the ethics of secrecy regarding gamete donation. These clinicians believe that denying people essential information about their identity, especially when it includes their medical history, is morally unacceptable. Furthermore, they cite the literature that comes from family therapy— and from adoption—documenting the negative impact of family secrets on parents and children and on family systems (see Chapter 10).

Separating the various components of parenthood means that indi­viduals and couples can create children who may be deceived about their genetic make-up and possibly (in the case of surrogates or gesta­tional carriers) about who gestated and gave birth to them. As with the previous ethical dilemma—the right to procreate with unknown gametes—questions arise about whether a patient’s autonomy—in this case the right to choose not to tell one’s offspring the truth—should take precedence over the possible harm done to that offspring if he or she goes through life being duped about his/her identity and conveying a false medical history.

Liberation vs. Exploitation of Women for Reproductive Purposes

Although there are many who believe that the new reproductive technologies are nothing short of miraculous and open up choices to women and to couples that would never have been possible, there are others who believe that they are a curse on families and upon women. Assisted reproductive technology is not without medical side effects or risks (see Chapter 2), and people who are desperate for children may not be in the best position to objectively evaluate these risks to them­selves or to third parties. The separation of the various components of motherhood means that some women who are not the intended par­ents (ovum donors and/or surrogates or gestational carriers) are being subjected to these risks. Many argue that an infertile couple/woman has the right to choose a procedure that involves potential physical harm, but that it is morally unacceptable to subject a young, fertile woman to these same risks when she is not the intended parent.

Furthermore financial incentives may be inducements to third parties to ignore these potential harms. Here we see examples of when con­cerns about autonomy and beneficence may collide.

A common worry among caregivers and couples opting for known ovum donation, surrogacy, or gestational care (via a friend or relative), is that the physical ordeal may produce short or long term side effects that are harmful. Careful counseling—both medical and psychologi-cal—of willing third parties, enables these collaborators to thoroughly consider the risks before deciding to proceed. And many argue that third parties, like infertility patients, are also entitled to autonomy when it comes to decisions regarding their bodies. Others argue, however, that there is always inherent coercion (financial or personal) for donors, surrogates, and carriers that cannot be dismissed and that amounts to exploitation.

Unnatural Conception

Although there are many infertile couples whose intense desire to bear biological children propels them to seek out the most advanced technology available, others are deeply troubled by what they regard as forcing conception. Those who look askance at high tech treatment are not always those who are guided by strong religious beliefs that conception is in God’s hands. Many are individuals who simply ques­tion the wisdom of creating a child who was not meant to be, and who wonder about the long term medical, social, and psychological effects of creating high tech babies.

Often, however, the question of what is meant to be is closely tied in to a couple’s religious or spiritual convictions. There are people of many religious denominations who have a deep and abiding belief in an all-powerful and all-knowing God who makes plans for people. They may even view their infertility as part of that divine plan—or perhaps as a trial imposed by God. The concept of forcing conception when it would otherwise not occur is unacceptable to people holding these convictions and contrary to their spiritual beliefs. Other religious traditions offer a different view of God, one that does not always include a predetermined plan. These traditions offer couples more license to determine their own plan and to take measures—including assisted reproductive technology—to achieve parenthood.

In addition to religious, social, or moral proscriptions against “forcing conception,” couples have personal feelings and reactions about what it means for them. The inability to “make” a baby through a natural, loving and intimate sexual union is a loss for most couples who turn to high tech treatment for assistance. The marital bed of an infertile couple already cluttered with temperature charts, thermometers, and ovulation predictor kits, is no longer the place where two people can merge their bodies and create a child from their sacred union. Most couples eventually seem to adjust to this loss and to focus on the preg­nancy and baby that will hopefully result, rather than on the means of conception. However, even a miraculous pregnancy does not erase the invasive and painful—often experienced as assaultive —initiation into pregnancy that couples using ART undergo. Margarete Sandelowski and colleagues capture the ART experience in the following words:

“... pain, not pleasure; struggle, not ease; separation, not unity; public exposure, not intimacy; and artifice, not naturalness, comprised the phenomenology of getting pregnant in infer­tile couples. In contrast to their fertile counterparts, these couples felt compelled to fight body, nature and convention to achieve conception.”

Unnatural Conception: Ethical Considerations

The development of in vitro fertilization made it possible for con­ception to occur outside the human body, and the further development of cryopreservation made it possible for the resulting embryos to be frozen and stored for future use. The ability to create and/or cryopre­serve human embryos raises questions about what may be done with them or to them. These questions involve issues regarding freezing, disposition, experimentation, and ownership, and raise even more fundamental questions about what the moral (and legal) status of an embryo is.

The Moral Status of Embryos

There are basically three view points about the moral status of an embryo. One perspective is that an embryo is a human life from the moment of conception. According to the Roman Catholic Church’s Instruction on Respect for Human Life in Its Origin and on the

Dignity of Procreation (1987), for example, life exists on a continuum, beginning with fertilization and ending with the death of that human being. The Roman Catholic Church believes that because an embryo has the potential to become a human being, it should be treated as such and afforded all the rights and dignities due to a human person. One of those rights is the right to life.

A second point of view—the opposite of the first—is that embryos are akin to property and that those people who “own” embryos should have no limits imposed on them. Thus couples are entitled to do with their embryos as they wish, including disposing of them.

A third point of view, and one that is most commonly held among both patients and providers, is somewhere in the middle—a belief that embryos are neither property nor people, but because they have the potential to become a person under certain conditions, they should be treated with dignity and respect. The Warnock Committee, which was convened in London, supported the last moral perspective. The com­mittee, consisting of physicians, lawyers, researchers, social worker, and theologians, published a report (1984) affirming that embryos have special status due to their human potential, but that they do not have the moral status of a living person.

Couples undergoing in vitro fertilization must face the question— and answer it for themselves—of what they believe the moral status of an embryo is, before undergoing treatment. This belief is likely to color many of the decisions they make regarding fertilization, implantation, and cryopreservation of embryos (see Chapter 2).

The Disposition of Extracorporeal Embryos

In an effort to maximize the chances for pregnancy, women under­going in vitro fertilization are prescribed powerful fertility drugs in hopes that they can produce a large cohort of eggs. The more eggs obtained, the more likely the couple is to have several good embryos to transfer and possibly to cryopreserve for future use. All reputable clinics limit the number of embryos they will transfer (usually between three and six, depending on their quality and on the woman’s age) in order to maximize the chances of pregnancy and minimize the chances of multiple birth. If the couple opts for cryopreservation, the excess embryos can be transferred to the woman’s uterus in another cycle which does not involve the use of powerful fertility drugs or an egg retrieval. Or, if the couple becomes pregnant, the frozen embryos can be stored until the couple is ready to have another child.

Occasionally couples who have embryos in storage feel their family is complete and do not wish to have more children. In other cases, cir­cumstances have intervened and they do not wish to attempt a pregnancy. They must then make a decision regarding the disposition of their cryopreserved embryos.

Because embryos do not have legal rights, most clinics have provi­sions regarding the disposition of couples’“extra” embryos. These provisions usually permit the couple to donate their embryos to another couple or to discard them. Some states allow research to be performed on embryos under certain conditions and couples who do not wish to have their embryos transferred to themselves or donated to another couple may opt to donate their embryos to research in lieu of discarding them.

Although most couples can reach agreement regarding the disposi­tion of their frozen embryos, occasionally there are disputes, the most well known of which is the Davis vs. Davis case. In this much publi­cized legal battle involving a divorcing couple, Ms. Davis wished to attempt pregnancy with the cryopreserved embryos, while her former husband sought to have them destroyed. Their case involved three trials: in the first trial the lower court found that the embryos were human beings whose best interest was to be brought to life, and so it ruled in favor of Ms. Davis. In the second trial the Tennessee appellate court agreed with Mr. Davis’ argument that he should not have to become a father against his will, thus reversing the decision of the lower court. In a final appeal, the Tennessee Supreme Court affirmed the decision of the appellate court, declaring that the burden to Mr. Davis of unwanted reproduction would be greater than the burden to Ms. Davis if the decision were otherwise. (Davis vs. Davis, Tennessee Supreme Court, 1992).

The Davis case drew considerable media attention, much of which cast a negative light on reproductive technology. Clearly, an essential question in the case—the moral status of embryos—was never really dealt with in the court of public opinion. However, divergent opinions on the moral status of embryos did form the basis of the legal opinions, with each reflecting a different perspective on this question.

Beyond illustrating different perspectives on the moral status of embryos, Davis vs. Davis reveals the need for legal counseling in assisted reproductive technology. Although it is rare for disputes between couples to find their way into a courtroom, there is always potential for disagreement. Legal agreements made at the outset of treatment between couples and any other participants will not prevent all disputes but will clarify intentions and may reduce the potential for conflict.

Before embarking on an IVF cycle, all couples must examine their beliefs regarding the moral status of embryos, and come to some agreement, even if it involves compromise, regarding the disposition of extracorporeal embryos. Many clinics require couples to put this decision in writing before eggs are inseminated. They are, of course, free to change their minds as time unfolds, but their intents must be expressed or noted prior to the beginning of an ART cycle.

Experimentation and Preimplantation Genetics

Questions regarding the moral status of an embryo also bring up questions about what is permissible to do to an embryo and at what stage it is permissible to do it. Because the Catholic Church, for exam­ple, believes that an embryo has the status of a human being, the Church does not believe that an embryo should be subjected to experi­mentation or tampering. The Warnock Committee, recognizing the value of research in order to improve the quality of human life, came up with several recommendations regarding the use of embryos in research. More recently, in the United States, a panel on embryo research con­vened by the National Institute of Health in 1995 supported research on embryos (referred to as pre-embryos) up to fourteen days post-con-ception.