- Email: [email protected]
A call for ethical boundaries in assisted reproduction
was recognized in the Royal Commission report in Canada as well. That model seems to work very well in the United Kingdom and may work well in other places, but I have difficulty with the idea of transposing it to the United States. First, the need is not there, and second, it would be a further barrier to access by increasing costs. In our decentralized, muddle-through world, I think we can manage without a H u m a n Fertilisation and Embryology Authority, although I am quite impressed by the consultative procedures HFEA has set up. It does not make sense to add a layer of bureaucracy to solve problems that may not be as serious as newspaper headlines suggest. There clearly is a need to implement existing policies and a need for more infrastructure in the sense of making clear the legal rules and the ethical norms that apply in this area. But I believe that can be done with the institutions we already have.
A Call for Ethical Boundaries in Assisted Reproduction (Bonnie Steinbock, PhD) Dr. Steinbock is a professor of philosophy at the State University of New York, Albany Campus, where she holds joint appointments in the departments of Public Policy and Health Policy and Management. She is the author of Life Before Birth, published by Oxford University Press in 1992. The following represents an edited portion of her presentation, the fuU text of which appears elsewhere in this issue. ohn Robertson's recent book, Children of Choice, sets forth the basic premise that individuals have a fundamental moral and legal right to make their own decisions regarding reproduction. I support that premise, as I am sure most of you do. Nonetheless, I think that his theory of procreative liberty, as outlined in Children of Choice, has some implausible and unacceptable implications. According to Robertson, procreative liberty is an important value because "whether one reproduces or not is central to personal identity, to dignity, and to the meaning of one's life. ''1 The right to reproduce belongs to fertile and infertile people alike. The mere physiological fact of infertility should not deprive people of the right to reproduce any more than the fact of blindness should deprive people of the right to read. Indeed, the principle of reasonable accommodation should apply to the infertile as it does to those who are disabled in other ways. So Robertson derives a prima facie right on the part of infertile people to access to assisted reproductive technologies. The existence of such a right does not mean that procreative decisions can never be restricted. Even fundamental constitutional rights can be limited, but only for "compelling" reasons, ie, when reproduction would "clearly harm the tangible interests of others" (p. 221). Robertson proposes a two-step procedure for determining when reproductive rights may be limited. First, it must be determined whether a "distinctively procreative interest" is involved, and, second, whether the harm threatened by reproduction (or nonreproduction) is sufficient to override procreative choice (p. 30).
J
The Concept of Reproduction Tout Court The right to reproduce involves two independent interests that typically, and ideally, coincide: an interest in having genetically related offspring and an interest in rearing. Obviously, however, it is possible to procreate without rearing, and to rear without procreating. According to Robertson, the interest in rearing itself, although important and deserving of societal protection, is not 144
WOMEN'S HEALTH ISSUES VOL. 6, NO. 3 MAY/JUNE 1996
distinctively procreative, and therefore not part of procreative liberty, whereas the interest in procreating without rearing (which Robertson calls "production tout court") is a distinctively procreative interest. [EDITOR'S NOTE: In his rebuttal during the discussion session, Mr. Robertson disputes this interpretation of his text.] Applying his theories to commercial surrogacy, Robertson argues that such arrangements fall within the purview of procreative liberty because they provide the only opportunity for some people to reproduce, that is, to have biologically related children. Respect for procreative liberty requires the state to enforce such contracts, because without some advance certainty about legal consequences, the parties might be unwilling to collaborate, "thus depriving the couple of the ingredients needed to have and rear offspring" (p. 126). Many of us are reluctant to see law enforcement agents tear infants from their mothers' arms, contract or no contract, and this reluctance undoubtedly has influenced the states that have found surrogate contracts to be void and unenforceable. By contrast, Robertson maintains not merely that procreative liberty includes the right to hire a surrogate, but also to be a surrogate, and that individuals have a fundamental right to use their reproductive capacities as they choose. This strikes me as implausible. Perhaps it can be argued that procreative liberty encompasses the right to hire a surrogate, because the purpose is to enable the individual or couple to have and rear a child. Engaging a surrogate is therefore a w a y of founding a family, and thus perhaps can be seen as closely related to the core value of the right to reproduce. The claim that there is a right to be a surrogate, however, must be based on the premise that reproduction tout court is a fundamental right, and yields the view that there is a fundamental moral and legal right to use one's reproductive capacities for hire. No court has interpreted procreative liberty this way, and we need a better conception.
Reproduction with the Intent to Rear We need to begin with the question, why is procreation important? Why does it deserve the protection of a fundamental right? The answer to this question is likely to be complex. Part of the answer has to do with the connection between procreation and sexual activity. Attempts to control procreation invariably infringe on a very private and intimate sphere of human existence, and one that most of us would prefer remain a matter of individual discretion. Another reason for regarding procreative choice as a private matter is that any attempt to intervene in procreative decisions infringes upon bodily integrity. What people do with their own bodies should be a private and individual decision unless there are compelling reasons for interference. A third reason for respecting individual choice regarding procreation stems from the profound impact such decisions are likely to have on people's lives. Having a child one does not want imposes serious physical, financial, and emotional burdens, as noted by the Supreme Court in Roe v Wade.2 Equally, being unable to have a child can be a source of lasting grief and disappointment to people who want to raise children, to have a family. Procreation deserves the protection of a fundamental right because of its connection with the raising of children. The right to reproduce is not primarily a right to pass on one's genes. The right to reproduce is, at its core, a right to have one's own children to rear. Where there is no intention or ability to rear, reproduction is at best a weak right. And the use of one's reproductive capacity for hire is so removed from the core value of procreative liberty that it cannot be considered a fundamental right.
NABER CONFERENCE
145
Admittedly, there may be individuals for whom reproduction tout court has enormous personal meaning, ie, for those who want to have genetic offspring they do not intend to rear. The question is why we, as a society, should protect such idiosyncratic interests. Indeed, in places Robertson himself agrees that there is no obligation on the part of society to enable individuals to reproduce out of selfish or warped desires. He writes, "Actions that aim to produce offspring that are more than normal (enhancement), less than normal (Bladerunner), or replicas of other human genomes (cloning) would not fall within procreative liberty because they deviate too far from the experiences that made reproduction a valued experience." That is where I think he goes right, and he should stick to that theme in the rest of the book. Robertson also maintains that individuals have the right to use genetic engineering to obtain children with desired traits because some people might not be willing to procreate if they cannot determine their offspring's characteristics. But surely this unwillingness is no argument for a right to use a technology, especially one with unknown and potentially harmful effects on offspring. It is a gigantic leap from the claim that prospective parents ought to be able to use medical technology to prevent the birth of a child with a serious genetic defect or disease, to the claim that individuals have a right to have "designer children."
Wrongful Life Standard Too Extreme In determining social policy, it seems to me that legislators should think not only about the desires of infertile couples, but also about the impact of the practice (genetic engineering or surrogacy, for example) on the children themselves. For example, we would expect policymakers to ask whether children who are born to women paid to relinquish them at birth are likely to have serious psychological problems. This cannot be answered with mere speculation, but requires serious empirical research. However, Robertson is not much interested in what such research might reveal. The reason is that, whatever psychological problems the children might have, they will probably value their lives and prefer to go on living. The risk of serious psychological problems in offspring cannot be used as an argument for banning or restricting commercial surrogacy because, as Robertson expresses it, "But for the technique in question, the child would never have been born. Whatever psychological or social problems arise, they hardly rise to the level of serious handicap or disability that would make the child's very existence a net burden, and hence a wrongful life standard" (p. 122). The effect of using a wrongful life standard for harmful outcomes is that the decision to procreate can never, or hardly ever, be criticized as irresponsible. Ostensibly, Robertson takes the idea of irresponsible reproduction seriously. For example, he says that "reproduction always has moral significance because it leads to the birth of another person, whose needs for love, nurturing, and resources have to be met" (p. 73). One might deduce, on reading this, that Robertson thinks that before deciding to procreate, people ought to think very carefully about the impact of their choice on the children they will bring into the world. In fact, there is virtually no case of reproduction that Robertson considers irresponsible. Consider, for example, a woman who is infected with human immunodeficiency virus (HIV). Would it be irresponsible of her, knowing her diagnosis, deliberately to conceive a child? We may assume that the woman wants very much to have a baby, that this is central to her identity and sense of meaning in life. But whether her decision is responsible depends on such things as the degree of the risk of transmission, the possibilities of therapies to
146
WOMEN'S HEALTH ISSUES VOL. 6, NO. 3 MAY/JUNE 1996
cure or ameliorate the child's condition after birt.h, and whether she is likely to live long enough to care for her child, or whether there are others who can perform this function. Instead, it does not matter how high the rate of transmission, or how sick the child will be, or how likely it is that he or she will end up as an orphan or "boarder baby" in some hospital. As Robertson puts it, "If there is no injury to offspring from their birth alone, then reproduction is not irresponsible solely because children are born in undesirable circumstances" (p. 76). Unless those "undesirable circumstances" amount to "wrongful life," it is not immoral or irresponsible to procreate. This view has startling consequences for clinics and doctors who provide fertility treatment. Nearly all IVF programs test couples for HIV and may refuse the procedure if one or both individuals test positive. Robertson writes, "The exclusion is usually justified on the 'ethical' ground of protecting offspring who would be born in disadvantageous circumstances. However, providing IVF services to these groups would not harm children who have no other way to be born, and thus may ethically be provided if a person is so inclined" (p. 117). Although he says these services "may" be provided ethically if a program is so inclined, in fact, Robertson's analysis is a good deal stronger than that. On the logical implications of his view, clinics are not merely free to provide IVF services to HIV-positive couples, if they are so inclined; they are morally, and perhaps legally, required to treat them. To deny HIV-positive couples fertility treatment would be to discriminate against them and to violate their right to reproduce.
Procreative Liberty Gone Mad This is surely procreative liberty gone mad. Respecting the right to reproduce does not require us to facilitate the birth of children with horrendous, lethal diseases, especially when their parents themselves are sick and unlikely to be able to participate in their upbringing. Robertson's theory of procreative liberty is a good starting place. However, it goes wrong in two ways. First, in giving the protection of a fundamental right to reproduction tout court, Robertson departs too far from the core value and meaning of procreative liberty, implausibly bringing such things as being a surrogate mother or selling one's gametes under the rubric of the right to reproduce. Instead, we should regard to right to reproduce as protecting the right to found a family--to have children in order to rear them. Second, in adopting a wrongful life standard for harmful outcomes, Robertson in effect rules out the approach he supposedly advocates, which is to balance the reproductive interests of individuals against the potential for harm to offspring and others. A better approach would be to recognize that the risk of creating children with serious physical or psychological handicaps is always a relevant reason for banning or restricting a reproductive technique or arrangement.
[EDITOR'S NOTE: This transcript represents an edited version of Dr. Steinbock's oral presentation. In her submitted paper, which is printed in full elsewhere in this issue, she proposes specific aspects of assisted reproduction that might appropriately be regulated under a modified view of reproductive freedom.] 1. Robertson JA. Children of choice: freedom and the new reproductive technologies. Princeton (NJ): Princeton University Press, 1994: 24. 2. Roe v Wade, 410 U.S. 113, 153 (1973).
NABER CONFERENCE 147
Open Discussion AI Jonsen, PhD, University of Washington School of Medicine (moderator), to Mr. Robertson: Is there anything you would like to say in response to Dr. Steinbock's remarks? Mr. Robertson: Bonnie has misread me on the first point. I do not argue that the right to reproduce tout court has the same standing as reproduction where rearing is intended. With regard to the issue of irresponsibility, one has to be clear about the precise reasons when making that claim. It may be that there are other effects, such as cost to others, or impact on the health care system, that make it irresponsible to have children whose disabilities are avoidable. But to say you should not do it because it is going to harm this child becomes, philosophically, an extremely difficult case to make. My point regarding HIV is not just the machinations and fantasies of a law professor. In fact, the Americans with Disabilities Act would appear to make it illegal for an IVF program to discriminate against an infertile couple, one of whom has HIV. Ruth Macklin, PhD , Albert Einstein College of Medicine (to Mr. Robertson): You said we need implementation of existing laws more than licensure or regulation, and yet you also implied that we need new laws. For example, you said only five states have legislation addressing the rearing rights and duties of oocyte donors and recipients. One other point that needs clarification concerns ownership, that persons from w h o m gametes are derived have the right to decide what happens to them. You said this is accepted as a general rule. Yet later, when you gave examples of lost, switched, and abandoned embryos, you seemed to favor the idea that the couple who gives birth or the woman who gives birth could be presumed to have custody. That sounds like an inconsistency. Mr. Robertson: The legal system provides infrastructure in the form of laws of contract and property that reinforce the consequences of doing certain things. I think we need more of that in the assisted reproduction area, especially with gamete donation and embryo donation. It would help if there were a legal infrastructure that made it very clear to donors and recipients what the legal consequences of their decisions would be. That is not the same as a regulatory system that says everyone must get a permit or license before they can proceed. Dr. Macklin: I understand that you are arguing against a centralized national body. But are you also calling for laws at the state level? Mr. Robertson: I was not arguing against new laws, but trying to distinguish between laws that are facilitative, that help people do certain things and plan their lives, and others which are directly regulatory, ie, laws that require that, in planning your life, you first get a permit or a license. On the second point, about consensus of ownership, I used the example of gametes and embryos noting that couples who have had these taken from them clearly deserve compensation, as they have lost something very important. The question of whether that also means they are entitled to claim the product of their gametes and embryos, especially when they have been gestated by another couple and reared for some period of time, is an entirely separate issue. If something very valuable was stolen from them, their rights have been violated, but that does not necessarily mean that they would get to recapture or rear the resulting product when others have added their labor and value to it. Dr. Steinbock: H o w would that differ from instances when children have been kidnapped and adopted and reared unknowingly by couples? If a baby were kidnapped, even if other people invested their rearing capacities in that child, do you think that the original parents should get their child back--or just get money?
148
WOMEN'S HEALTH ISSUES VOL. 6, NO. 3 MAY/JUNE 1996
Mr. Robertson: In the case of the switched embryos, the other couple provided gestation and was involved in a very intimate and important way. Even though I favor the genetic parents in the surrogacy setting, here I find a case where it may well be that the gestational parents' interests should trump those of the genetic parents. I realize it is a close question and people may well differ. It is something that will have to be worked out.
Machelle Seibel, Faulkner Center for Reproductive Medicine (to Dr. Steinbock): You made a distinction between "designer" children and disabled or handicapped children, yet within the deaf community there is a strong desire to have a deaf child. It is preferred. In the dwarf community, also, an option to have preimplantation genetics could create enormous social pressures, because to have a child of normal stature means that use of everything in the house, and even their ability to pick up their child, are limited. Similarly, some people with Fragile X syndrome adopt children who have Fragile X, knowing their limitations, because they feel strongly about it. So I would urge caution in defining a disability as an undesirable thing, and even putting a label on it.
Dr. Steinbock: I would not say that it is wrong to have a handicapped child. However, should you do something to the embryo to ensure that a child has what would normally be considered a disability? We would all agree that deaf parents should not be allowed to puncture the eardrum of their newborn . . . . Dr. Seibel: But they could select genetically to have that outcome. Dr. Steinbock: Is there a rational basis for making that distinction? Just because it hurts to have your eardrum punctured? If we could give an anesthetic to the baby and say, "Look, we do not want to do this genetic stuff, it is not reliable. Instead, once the baby is born, we want you, doctor, to puncture his eard r u m . . . " it would be child abuse. No question about it. I am not convinced that genetically engineering a child to ensure that he is deaf would not also be child abuse. It seems to me you can teach the child to communicate with the parents without taking away the option of hearing. You have given lots of very interesting examples, and we would have to look at each one, but it does not seem to me that parents have a right to impose a physical disability on their child.
Edward E. Wallach, MD, Johns Hopkins University (to Dr. Robertson): For a number of years you have argued in favor of procreative liberty. What qualifying standards would you set, and how does this compare to the issue of abortion? Dr. Robertson: My analysis, for the most part, is against state restrictions. Obviously, private clinics would have more freedom to take harms into account than the state, including so-called "symbolic" or intangible harms, such as finding it offensive that someone would manipulate human life for a reproductive project. My argument goes to the limits of state power, but would not prevent a clinic or practitioners from deciding not to participate in practices that offend their beliefs. When you look at the model we used in the abortion area, the fact that many people in the community think a fetus has great value in its own right turns out not to be a sufficient harm to justify intruding on the body of the woman. It seems to me that the same principle would have to be applied here. Cynthia Cohen, PhD, Garrett Park, Md: Can more be done by the profession itself, and not just by professionals, but by bringing in ethicists and lay people who are interested? Are we really doing enough to ensure better standards for assisted reproduction?
Dr. Robertson: There is certainly a lot of room for interaction among the various professional interests. It may even help to have some kind of national commission in charge of establishing norms and rules, or clarifying them. This might help, as opposed to a regulatory body that you have to go to for permission.
NABER CONFERENCE
149
Bambi Robinson, PhD, Southeast Missouri State University: At times in your talk, you referred to the "infrastructure" as being moral in nature, yet you also refer to it as legal authority. I am not sure which you prefer. And if you have guidelines without teeth to enforce them, is it not true that the people who are generally good and moral will go ahead and do the good and moral thing anyway, but the people who do not care about ethics will not?
Mr. Robertson: There should be teeth here for the rules and norms that are developed. Teeth concerning ownership, for example. If someone is wrongfully deprived of their embryos and gametes through negligence or intentional misappropriation, they should be compensated. That is part of infrastructure in that it facilitates people going ahead with their plans.
Marybeth Gerrity, PhD, HCLD, Reproductive Biology Resources, Inc.: It is important to distinguish between the loss of embryos due to negligence and that which is part of doing the procedure. There is probably not an embryologist in the United States who has not lost an embryo, and not because of negligence, but due to the sheer difficulty of the procedures we do.
Mr. Robertson: I agree. I am not arguing for strict liability whenever an embryo is lost, but recognition of a standard of care regarding how embryos are handled. If you have a clinic that is not following proper procedures, and embryos get lost, it represents a serious loss that should not have occurred. It may be hard to sort out those two types of losses, but that is a problem we face whenever there are allegations.
James Gimaldi, The Orange County Register: Do you think there should be criminal prosecution in the UCI case? [See Executive Summary.]
Mr. Robertson: If the allegations against Dr. Asch are correct, and he has intentionally misappropriated the embryos and gametes of others, then he should be subject to criminal prosecution. This clearly falls under the theft statutes, and he could be prosecuted under state law. I have heard that the Orange County district attorney has decided not to prosecute for theft, and I think that is unfortunate.
Dr. Steinbock: What is the pecuniary value of an embryo? Mr. Robertson: You could start with the cost of production of it and go from there. It clearly has a value in that it costs money to produce. I am told, that the reason they are not proceeding with the criminal prosecution in Orange County is because they do not know if they can show that each embryo is worth more than $1,000, which you need for a felony theft prosecution in California.
SESSION FOUR: U.S. REGULATORY ISSUES In 1992, Congress passed legislation to allow some federal oversight of assisted reproduction. Although it is not regulatory in nature, and calls for voluntary participation of clinics around the country, the Fertility Clinic Success Rate and Certification Act, promote uniformity in reporting pregnancy success rates and encourage accreditation and adherence to professional standards. Responsibility for implementation has been given to the federal Centers for Disease Control and Prevention, but the effort has been hindered greatly because to date there have been no funds appropriated for the measure.
Federal Oversight of Assisted Reproduction: Public Health, Consumer Protection, and Public Resources (Lynne Wilcox, MD, MPH) Dr. Wilcox is an epidemiologist and deputy chief of the Program Services and Development Branch, Division of Reproductive Health, National Center for Chronic Disease 150
W O M E N ' S HEALTH ISSUES VOL. 6, NO. 3 MAY/JUNE 1996
A Call for Ethical Boundaries in Assisted Reproduction (Bonnie Steinbock, PhD) Dr. Steinbock is a professor of philosophy at the State University of New York, Albany Campus, where she holds joint appointments in the departments of Public Policy and Health Policy and Management. She is the author of Life Before Birth, published by Oxford University Press in 1992. The following represents an edited portion of her presentation, the fuU text of which appears elsewhere in this issue. ohn Robertson's recent book, Children of Choice, sets forth the basic premise that individuals have a fundamental moral and legal right to make their own decisions regarding reproduction. I support that premise, as I am sure most of you do. Nonetheless, I think that his theory of procreative liberty, as outlined in Children of Choice, has some implausible and unacceptable implications. According to Robertson, procreative liberty is an important value because "whether one reproduces or not is central to personal identity, to dignity, and to the meaning of one's life. ''1 The right to reproduce belongs to fertile and infertile people alike. The mere physiological fact of infertility should not deprive people of the right to reproduce any more than the fact of blindness should deprive people of the right to read. Indeed, the principle of reasonable accommodation should apply to the infertile as it does to those who are disabled in other ways. So Robertson derives a prima facie right on the part of infertile people to access to assisted reproductive technologies. The existence of such a right does not mean that procreative decisions can never be restricted. Even fundamental constitutional rights can be limited, but only for "compelling" reasons, ie, when reproduction would "clearly harm the tangible interests of others" (p. 221). Robertson proposes a two-step procedure for determining when reproductive rights may be limited. First, it must be determined whether a "distinctively procreative interest" is involved, and, second, whether the harm threatened by reproduction (or nonreproduction) is sufficient to override procreative choice (p. 30).
J
The Concept of Reproduction Tout Court The right to reproduce involves two independent interests that typically, and ideally, coincide: an interest in having genetically related offspring and an interest in rearing. Obviously, however, it is possible to procreate without rearing, and to rear without procreating. According to Robertson, the interest in rearing itself, although important and deserving of societal protection, is not 144
WOMEN'S HEALTH ISSUES VOL. 6, NO. 3 MAY/JUNE 1996
distinctively procreative, and therefore not part of procreative liberty, whereas the interest in procreating without rearing (which Robertson calls "production tout court") is a distinctively procreative interest. [EDITOR'S NOTE: In his rebuttal during the discussion session, Mr. Robertson disputes this interpretation of his text.] Applying his theories to commercial surrogacy, Robertson argues that such arrangements fall within the purview of procreative liberty because they provide the only opportunity for some people to reproduce, that is, to have biologically related children. Respect for procreative liberty requires the state to enforce such contracts, because without some advance certainty about legal consequences, the parties might be unwilling to collaborate, "thus depriving the couple of the ingredients needed to have and rear offspring" (p. 126). Many of us are reluctant to see law enforcement agents tear infants from their mothers' arms, contract or no contract, and this reluctance undoubtedly has influenced the states that have found surrogate contracts to be void and unenforceable. By contrast, Robertson maintains not merely that procreative liberty includes the right to hire a surrogate, but also to be a surrogate, and that individuals have a fundamental right to use their reproductive capacities as they choose. This strikes me as implausible. Perhaps it can be argued that procreative liberty encompasses the right to hire a surrogate, because the purpose is to enable the individual or couple to have and rear a child. Engaging a surrogate is therefore a w a y of founding a family, and thus perhaps can be seen as closely related to the core value of the right to reproduce. The claim that there is a right to be a surrogate, however, must be based on the premise that reproduction tout court is a fundamental right, and yields the view that there is a fundamental moral and legal right to use one's reproductive capacities for hire. No court has interpreted procreative liberty this way, and we need a better conception.
Reproduction with the Intent to Rear We need to begin with the question, why is procreation important? Why does it deserve the protection of a fundamental right? The answer to this question is likely to be complex. Part of the answer has to do with the connection between procreation and sexual activity. Attempts to control procreation invariably infringe on a very private and intimate sphere of human existence, and one that most of us would prefer remain a matter of individual discretion. Another reason for regarding procreative choice as a private matter is that any attempt to intervene in procreative decisions infringes upon bodily integrity. What people do with their own bodies should be a private and individual decision unless there are compelling reasons for interference. A third reason for respecting individual choice regarding procreation stems from the profound impact such decisions are likely to have on people's lives. Having a child one does not want imposes serious physical, financial, and emotional burdens, as noted by the Supreme Court in Roe v Wade.2 Equally, being unable to have a child can be a source of lasting grief and disappointment to people who want to raise children, to have a family. Procreation deserves the protection of a fundamental right because of its connection with the raising of children. The right to reproduce is not primarily a right to pass on one's genes. The right to reproduce is, at its core, a right to have one's own children to rear. Where there is no intention or ability to rear, reproduction is at best a weak right. And the use of one's reproductive capacity for hire is so removed from the core value of procreative liberty that it cannot be considered a fundamental right.
NABER CONFERENCE
145
Admittedly, there may be individuals for whom reproduction tout court has enormous personal meaning, ie, for those who want to have genetic offspring they do not intend to rear. The question is why we, as a society, should protect such idiosyncratic interests. Indeed, in places Robertson himself agrees that there is no obligation on the part of society to enable individuals to reproduce out of selfish or warped desires. He writes, "Actions that aim to produce offspring that are more than normal (enhancement), less than normal (Bladerunner), or replicas of other human genomes (cloning) would not fall within procreative liberty because they deviate too far from the experiences that made reproduction a valued experience." That is where I think he goes right, and he should stick to that theme in the rest of the book. Robertson also maintains that individuals have the right to use genetic engineering to obtain children with desired traits because some people might not be willing to procreate if they cannot determine their offspring's characteristics. But surely this unwillingness is no argument for a right to use a technology, especially one with unknown and potentially harmful effects on offspring. It is a gigantic leap from the claim that prospective parents ought to be able to use medical technology to prevent the birth of a child with a serious genetic defect or disease, to the claim that individuals have a right to have "designer children."
Wrongful Life Standard Too Extreme In determining social policy, it seems to me that legislators should think not only about the desires of infertile couples, but also about the impact of the practice (genetic engineering or surrogacy, for example) on the children themselves. For example, we would expect policymakers to ask whether children who are born to women paid to relinquish them at birth are likely to have serious psychological problems. This cannot be answered with mere speculation, but requires serious empirical research. However, Robertson is not much interested in what such research might reveal. The reason is that, whatever psychological problems the children might have, they will probably value their lives and prefer to go on living. The risk of serious psychological problems in offspring cannot be used as an argument for banning or restricting commercial surrogacy because, as Robertson expresses it, "But for the technique in question, the child would never have been born. Whatever psychological or social problems arise, they hardly rise to the level of serious handicap or disability that would make the child's very existence a net burden, and hence a wrongful life standard" (p. 122). The effect of using a wrongful life standard for harmful outcomes is that the decision to procreate can never, or hardly ever, be criticized as irresponsible. Ostensibly, Robertson takes the idea of irresponsible reproduction seriously. For example, he says that "reproduction always has moral significance because it leads to the birth of another person, whose needs for love, nurturing, and resources have to be met" (p. 73). One might deduce, on reading this, that Robertson thinks that before deciding to procreate, people ought to think very carefully about the impact of their choice on the children they will bring into the world. In fact, there is virtually no case of reproduction that Robertson considers irresponsible. Consider, for example, a woman who is infected with human immunodeficiency virus (HIV). Would it be irresponsible of her, knowing her diagnosis, deliberately to conceive a child? We may assume that the woman wants very much to have a baby, that this is central to her identity and sense of meaning in life. But whether her decision is responsible depends on such things as the degree of the risk of transmission, the possibilities of therapies to
146
WOMEN'S HEALTH ISSUES VOL. 6, NO. 3 MAY/JUNE 1996
cure or ameliorate the child's condition after birt.h, and whether she is likely to live long enough to care for her child, or whether there are others who can perform this function. Instead, it does not matter how high the rate of transmission, or how sick the child will be, or how likely it is that he or she will end up as an orphan or "boarder baby" in some hospital. As Robertson puts it, "If there is no injury to offspring from their birth alone, then reproduction is not irresponsible solely because children are born in undesirable circumstances" (p. 76). Unless those "undesirable circumstances" amount to "wrongful life," it is not immoral or irresponsible to procreate. This view has startling consequences for clinics and doctors who provide fertility treatment. Nearly all IVF programs test couples for HIV and may refuse the procedure if one or both individuals test positive. Robertson writes, "The exclusion is usually justified on the 'ethical' ground of protecting offspring who would be born in disadvantageous circumstances. However, providing IVF services to these groups would not harm children who have no other way to be born, and thus may ethically be provided if a person is so inclined" (p. 117). Although he says these services "may" be provided ethically if a program is so inclined, in fact, Robertson's analysis is a good deal stronger than that. On the logical implications of his view, clinics are not merely free to provide IVF services to HIV-positive couples, if they are so inclined; they are morally, and perhaps legally, required to treat them. To deny HIV-positive couples fertility treatment would be to discriminate against them and to violate their right to reproduce.
Procreative Liberty Gone Mad This is surely procreative liberty gone mad. Respecting the right to reproduce does not require us to facilitate the birth of children with horrendous, lethal diseases, especially when their parents themselves are sick and unlikely to be able to participate in their upbringing. Robertson's theory of procreative liberty is a good starting place. However, it goes wrong in two ways. First, in giving the protection of a fundamental right to reproduction tout court, Robertson departs too far from the core value and meaning of procreative liberty, implausibly bringing such things as being a surrogate mother or selling one's gametes under the rubric of the right to reproduce. Instead, we should regard to right to reproduce as protecting the right to found a family--to have children in order to rear them. Second, in adopting a wrongful life standard for harmful outcomes, Robertson in effect rules out the approach he supposedly advocates, which is to balance the reproductive interests of individuals against the potential for harm to offspring and others. A better approach would be to recognize that the risk of creating children with serious physical or psychological handicaps is always a relevant reason for banning or restricting a reproductive technique or arrangement.
[EDITOR'S NOTE: This transcript represents an edited version of Dr. Steinbock's oral presentation. In her submitted paper, which is printed in full elsewhere in this issue, she proposes specific aspects of assisted reproduction that might appropriately be regulated under a modified view of reproductive freedom.] 1. Robertson JA. Children of choice: freedom and the new reproductive technologies. Princeton (NJ): Princeton University Press, 1994: 24. 2. Roe v Wade, 410 U.S. 113, 153 (1973).
NABER CONFERENCE 147
Open Discussion AI Jonsen, PhD, University of Washington School of Medicine (moderator), to Mr. Robertson: Is there anything you would like to say in response to Dr. Steinbock's remarks? Mr. Robertson: Bonnie has misread me on the first point. I do not argue that the right to reproduce tout court has the same standing as reproduction where rearing is intended. With regard to the issue of irresponsibility, one has to be clear about the precise reasons when making that claim. It may be that there are other effects, such as cost to others, or impact on the health care system, that make it irresponsible to have children whose disabilities are avoidable. But to say you should not do it because it is going to harm this child becomes, philosophically, an extremely difficult case to make. My point regarding HIV is not just the machinations and fantasies of a law professor. In fact, the Americans with Disabilities Act would appear to make it illegal for an IVF program to discriminate against an infertile couple, one of whom has HIV. Ruth Macklin, PhD , Albert Einstein College of Medicine (to Mr. Robertson): You said we need implementation of existing laws more than licensure or regulation, and yet you also implied that we need new laws. For example, you said only five states have legislation addressing the rearing rights and duties of oocyte donors and recipients. One other point that needs clarification concerns ownership, that persons from w h o m gametes are derived have the right to decide what happens to them. You said this is accepted as a general rule. Yet later, when you gave examples of lost, switched, and abandoned embryos, you seemed to favor the idea that the couple who gives birth or the woman who gives birth could be presumed to have custody. That sounds like an inconsistency. Mr. Robertson: The legal system provides infrastructure in the form of laws of contract and property that reinforce the consequences of doing certain things. I think we need more of that in the assisted reproduction area, especially with gamete donation and embryo donation. It would help if there were a legal infrastructure that made it very clear to donors and recipients what the legal consequences of their decisions would be. That is not the same as a regulatory system that says everyone must get a permit or license before they can proceed. Dr. Macklin: I understand that you are arguing against a centralized national body. But are you also calling for laws at the state level? Mr. Robertson: I was not arguing against new laws, but trying to distinguish between laws that are facilitative, that help people do certain things and plan their lives, and others which are directly regulatory, ie, laws that require that, in planning your life, you first get a permit or a license. On the second point, about consensus of ownership, I used the example of gametes and embryos noting that couples who have had these taken from them clearly deserve compensation, as they have lost something very important. The question of whether that also means they are entitled to claim the product of their gametes and embryos, especially when they have been gestated by another couple and reared for some period of time, is an entirely separate issue. If something very valuable was stolen from them, their rights have been violated, but that does not necessarily mean that they would get to recapture or rear the resulting product when others have added their labor and value to it. Dr. Steinbock: H o w would that differ from instances when children have been kidnapped and adopted and reared unknowingly by couples? If a baby were kidnapped, even if other people invested their rearing capacities in that child, do you think that the original parents should get their child back--or just get money?
148
WOMEN'S HEALTH ISSUES VOL. 6, NO. 3 MAY/JUNE 1996
Mr. Robertson: In the case of the switched embryos, the other couple provided gestation and was involved in a very intimate and important way. Even though I favor the genetic parents in the surrogacy setting, here I find a case where it may well be that the gestational parents' interests should trump those of the genetic parents. I realize it is a close question and people may well differ. It is something that will have to be worked out.
Machelle Seibel, Faulkner Center for Reproductive Medicine (to Dr. Steinbock): You made a distinction between "designer" children and disabled or handicapped children, yet within the deaf community there is a strong desire to have a deaf child. It is preferred. In the dwarf community, also, an option to have preimplantation genetics could create enormous social pressures, because to have a child of normal stature means that use of everything in the house, and even their ability to pick up their child, are limited. Similarly, some people with Fragile X syndrome adopt children who have Fragile X, knowing their limitations, because they feel strongly about it. So I would urge caution in defining a disability as an undesirable thing, and even putting a label on it.
Dr. Steinbock: I would not say that it is wrong to have a handicapped child. However, should you do something to the embryo to ensure that a child has what would normally be considered a disability? We would all agree that deaf parents should not be allowed to puncture the eardrum of their newborn . . . . Dr. Seibel: But they could select genetically to have that outcome. Dr. Steinbock: Is there a rational basis for making that distinction? Just because it hurts to have your eardrum punctured? If we could give an anesthetic to the baby and say, "Look, we do not want to do this genetic stuff, it is not reliable. Instead, once the baby is born, we want you, doctor, to puncture his eard r u m . . . " it would be child abuse. No question about it. I am not convinced that genetically engineering a child to ensure that he is deaf would not also be child abuse. It seems to me you can teach the child to communicate with the parents without taking away the option of hearing. You have given lots of very interesting examples, and we would have to look at each one, but it does not seem to me that parents have a right to impose a physical disability on their child.
Edward E. Wallach, MD, Johns Hopkins University (to Dr. Robertson): For a number of years you have argued in favor of procreative liberty. What qualifying standards would you set, and how does this compare to the issue of abortion? Dr. Robertson: My analysis, for the most part, is against state restrictions. Obviously, private clinics would have more freedom to take harms into account than the state, including so-called "symbolic" or intangible harms, such as finding it offensive that someone would manipulate human life for a reproductive project. My argument goes to the limits of state power, but would not prevent a clinic or practitioners from deciding not to participate in practices that offend their beliefs. When you look at the model we used in the abortion area, the fact that many people in the community think a fetus has great value in its own right turns out not to be a sufficient harm to justify intruding on the body of the woman. It seems to me that the same principle would have to be applied here. Cynthia Cohen, PhD, Garrett Park, Md: Can more be done by the profession itself, and not just by professionals, but by bringing in ethicists and lay people who are interested? Are we really doing enough to ensure better standards for assisted reproduction?
Dr. Robertson: There is certainly a lot of room for interaction among the various professional interests. It may even help to have some kind of national commission in charge of establishing norms and rules, or clarifying them. This might help, as opposed to a regulatory body that you have to go to for permission.
NABER CONFERENCE
149
Bambi Robinson, PhD, Southeast Missouri State University: At times in your talk, you referred to the "infrastructure" as being moral in nature, yet you also refer to it as legal authority. I am not sure which you prefer. And if you have guidelines without teeth to enforce them, is it not true that the people who are generally good and moral will go ahead and do the good and moral thing anyway, but the people who do not care about ethics will not?
Mr. Robertson: There should be teeth here for the rules and norms that are developed. Teeth concerning ownership, for example. If someone is wrongfully deprived of their embryos and gametes through negligence or intentional misappropriation, they should be compensated. That is part of infrastructure in that it facilitates people going ahead with their plans.
Marybeth Gerrity, PhD, HCLD, Reproductive Biology Resources, Inc.: It is important to distinguish between the loss of embryos due to negligence and that which is part of doing the procedure. There is probably not an embryologist in the United States who has not lost an embryo, and not because of negligence, but due to the sheer difficulty of the procedures we do.
Mr. Robertson: I agree. I am not arguing for strict liability whenever an embryo is lost, but recognition of a standard of care regarding how embryos are handled. If you have a clinic that is not following proper procedures, and embryos get lost, it represents a serious loss that should not have occurred. It may be hard to sort out those two types of losses, but that is a problem we face whenever there are allegations.
James Gimaldi, The Orange County Register: Do you think there should be criminal prosecution in the UCI case? [See Executive Summary.]
Mr. Robertson: If the allegations against Dr. Asch are correct, and he has intentionally misappropriated the embryos and gametes of others, then he should be subject to criminal prosecution. This clearly falls under the theft statutes, and he could be prosecuted under state law. I have heard that the Orange County district attorney has decided not to prosecute for theft, and I think that is unfortunate.
Dr. Steinbock: What is the pecuniary value of an embryo? Mr. Robertson: You could start with the cost of production of it and go from there. It clearly has a value in that it costs money to produce. I am told, that the reason they are not proceeding with the criminal prosecution in Orange County is because they do not know if they can show that each embryo is worth more than $1,000, which you need for a felony theft prosecution in California.
SESSION FOUR: U.S. REGULATORY ISSUES In 1992, Congress passed legislation to allow some federal oversight of assisted reproduction. Although it is not regulatory in nature, and calls for voluntary participation of clinics around the country, the Fertility Clinic Success Rate and Certification Act, promote uniformity in reporting pregnancy success rates and encourage accreditation and adherence to professional standards. Responsibility for implementation has been given to the federal Centers for Disease Control and Prevention, but the effort has been hindered greatly because to date there have been no funds appropriated for the measure.
Federal Oversight of Assisted Reproduction: Public Health, Consumer Protection, and Public Resources (Lynne Wilcox, MD, MPH) Dr. Wilcox is an epidemiologist and deputy chief of the Program Services and Development Branch, Division of Reproductive Health, National Center for Chronic Disease 150
W O M E N ' S HEALTH ISSUES VOL. 6, NO. 3 MAY/JUNE 1996