Daniel Callahan Young Writer's Prize Winner

Congratulations to Michelle Bayefsky on winning the first Daniel Callahan Young Writer's Prize! Michelle will be receiving the prize award of $500 and a copy of Daniel Callahan's autobiography, In Search of the Good: A Life in Bioethics. Thank you to the finalist judges, Daniel Callahan, Michael Gusmano, and Laura Haupt (their bios can be found here). 

Uterine Transplant: Where, If Anywhere, Should We Draw the Line?
By Michelle Bayefsky

In October 2014, researchers from the University of Gothenburg in Sweden reported the first case of a live birth following a uterine transplant. The uterus was transplanted from a postmenopausal woman into a 36 year-old woman born without a uterus. At nearly 32 weeks of pregnancy, she gave birth to a male child with normal birth weight for gestational age and excellent APGAR scores.[1]

The birth of this child represents a tremendous breakthrough in the treatment of infertility. There are many causes of female infertility, including damaged fallopian tubes, premature menopause and endometrial (uterine tissue) abnormalities. Corresponding treatments include in vitro fertilization, use of donor eggs, and use of a gestational surrogate. Uterine transplantation could obviate the need for gestational surrogates for patients with uterine infertility, allowing these mothers-to-be to carry their own pregnancies and potentially precipitating a decline of the controversial practice of surrogacy.

But why stop there? If uterine transplantation is a treatment for absolute uterine infertility, trans-women also have this condition, and so do all men. In this essay, I will explore whether and where to draw the line for those who should be eligible for a uterine transplant.

It is not yet possible for individuals with XY sex chromosomes to gestate a child. However, the desire for transgender women to carry a pregnancy is present,[2] and at least one bioethicist, Timothy Murphy, has begun to think about the prospect of uterine transplants into trans-women.[3] Murphy correctly focuses on state funding, since the hands-off regulatory attitude towards reproductive medicine in the United States[4] makes it unlikely that transgender uterine transplants would be banned outright. The debate about the appropriateness of transgender uterine transplants will therefore center on the need to prioritize limited healthcare resources.[5]

There are two central questions at stake. First, is there such a thing as a right to a uterine transplant? Second, is there a reason to distinguish between cis-women, trans-women, and men with regards to their claims to a uterine transplant, whether or not rights are at stake? If so, the state could be justified in prioritizing the needs of cis-women over trans-women over men who desire to gestate a child.

Uteruses are a scarce resource, and the state cannot ensure uteruses to all those who might lack and strongly desire them. It is therefore difficult to claim that people have a right to a uterine transplant, though they may have a right to fair access to an established supply of uteruses, should one come to exist. The scarcity issue is compounded by the fact that uteruses, like other organs, exist within other people’s bodies. Unless a sufficient number of uteruses are supplied via donation, claiming a right to a uterine transplant would be claiming a right to someone else’s body part. One could conceive of body parts as public goods, but such a view would violate our closely held beliefs about bodily autonomy. Since the state cannot forcibly redistribute organs, the right to a uterus can only be a right in an abstract sense. Nevertheless, the relative strength of claims to this abstract right can be used to determine what constitutes fair access to the limited supply of uteruses. Who, if anyone, should be prioritized?

Answering this question requires that we carefully examine our notions of infertility and instincts about childbearing. Intuitively, we might think there are reasons to differentiate among cis-women, trans-women, and men based on physical features and what it means to be “infertile.” For instance, it may be tempting to argue that cis-women without uteruses are infertile because they lack the typical reproductive organs of an XX-woman, while trans-women and men are fertile because they can still use sperm to ‘father’ children in the classic XY manner. However, all three categories are fertile in terms of their gametic capacity to reproduce but infertile with regards to the capacity to gestate.

One might also attempt to argue that women, whether cis or trans, have a stronger claim to the experience of carrying a child because it is typically a woman’s experience and part of being female. However, many women choose not to have children and are not lesser women because of it. Furthermore, arguments about childbearing based on assumptions about what it means to be a woman risk unjustly imposing societal norms and expectations on women, both cis and trans.

It may seem that distinctions among the three groups most plausibly rely on assertions relating to the prospective happiness of the transplant recipient. It is possible that cis-women have greater childbearing expectations, and would be most anguished by the inability to carry a pregnancy and should thus be given highest priority. Similarly, trans-women, who identify as the sex that typically bears children, may be more anguished than a self-identifying man. It is easy to imagine, though, a trans-woman who has always longed to gestate a child, or even a man with a very strong desire to carry a child, who would suffer deeply if they could not obtain a uterine transplant – even more than some cis-women without functional uteruses. Thus psychological impact could not reliably be used to distinguish among the three groups.

Ultimately, a priori distinctions could most reasonably be made on the basis of differential resource expenditure. If uterine transplantation is significantly easier, more successful or less expensive in a cis-woman, or a trans-woman who has undergone hormone therapy, this justifies prioritizing these groups the same way recipients are prioritized in the donation of other organs.[6]

Realistically, given the general lack of coverage for fertility services in the United States,[7] it is unlikely that either cis or trans-gender uterine transplants will be funded in the near future.

However, if uterine transplants do receive public funding and transplants into XY women and men are equally successful and no more economically burdensome than transplants into XX women, trans-women, as well as men with a profound desire to gestate, should be equally eligible to receive a uterine transplant.

Michelle Bayefsky is a first-year pre-doctoral fellow in the Department of Bioethics for the National Institutes of Health. She graduated from Yale University in 2014 with a B.A. in Ethics, Politics and Economics. She worked as a research assistant for two consecutive directors of the Yale Interdisciplinary Center for Bioethics. She also founded and served as Editor-in-Chief of the Yale Bioethics Journal. Michelle currently investigates ethical challenges posed by innovations in genetic technology, issues related to the regulation of genetic testing, and questions that arise at the intersection of genetics and reproductive medicine.
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[1] Brännström, M., L. Johannesson, et al. (2014). "Livebirth after uterus transplantation." The Lancet.

[2] Mott, Stephanie. "Trans-Uterus." The Huffington Post. TheHuffingtonPost.com, 21 Jan. 2014. Web. 14 Nov. 2014.

[3] Murphy, Timothy. "The Ethics of Helping Transgender Men and Women Have Children." Perspectives in Biology and Medicine 53.1 (2010): 46-60.

[4] Leigh, Suzanne. "Reproductive 'tourism'" USA Today - Health and Behavior. USATODAY.com, 02 May 2005. Web. 19 Sept. 2014; Williams, Benjamin. "Screening for Children: Choice and Chance in the “Wild West” of Reproductive Medicine." George Washington Law Review 79.4 (2011): 1305-342.

[5] Murphy, Timothy. "Uterus Transplants for Transgender Women?" Weblog post. Ethics and Choices about Children. Timothyfmurphy.blogspot.com, 27 Apr. 2014. Web. 14 Nov. 2014.

[6] The use of cost-effectiveness arguments in prioritizing organ transplantation is itself controversial (see, for example, Dan Brock, “Ethical Issues in the Use of Cost Effectiveness Analysis for the Prioritisation of Health Care Resources”), but I cannot explore this issue here.

[7] "State Laws Related To Insurance Coverage for Infertility Treatment." Insurance Coverage for Infertility Laws. National Conference of State Legislatures, Jun. 2014. Web. 12 Nov. 2014.

Mitochondrial Donation: Why the Controversy?

By: Michelle Bayefsky

Late last month, the Cellular, Tissue, and Gene Therapies Advisory Committee of the Food and Drug Administration (FDA) met to consider whether research on mitochondrial donation, which could be used to prevent women from passing on mitochondrial disease to their children, was ready to begin testing in humans.  Instead of excitement at the prospect of eradicating mitochondrial disease, which can cause blindness, dementia, epilepsy, and many other conditions, much of the public reaction was characterized by fear, confusion, and hostility.  Headlines from “Genetically Modified Babies” to “Tinkering with Frankenstein: Obama Admin Considers Three-Parent Embryos” flooded the internet, and scientists and bioethicists struggled to refocus attention on the medical feat that is close to being achieved.[1]

Mitochondrial donation involves either transferring healthy mitochondria from a donor into the egg of an affected woman, or inserting the pronuclei of two prospective parents into an enucleated donor egg.[2]  Since mitochondria carry their own DNA and are maternally inherited, children born after mitochondrial donation will technically have DNA from three people – hence the nickname “three-parent IVF” given to the procedure by the press.  This nickname is misleading, however.  The degree to which genetic parentage should be considered synonymous with parentage has already been questioned in debates regarding egg and sperm donation, surrogacy, and adoption.  “Three-parent IVF” suggests a complicated family situation which would be not at all necessary; if social and legal norms have been successfully established for donating gametes containing nuclear DNA to couples with infertility, surely the same could be accomplished with donating mitochondrial DNA.  Furthermore, it seems highly unlikely that we would come to view the donor of mitochondria, an organelle about which most members of the public have little knowledge, as a parent on equal footing with the parents who contribute nuclear DNA and/or intend to raise the resulting child.

Aside from the question of parentage, the major source of controversy surrounding mitochondrial donation is the fact that the technique constitutes a germline modification; the donated mitochondrial DNA would be passed down from generation to generation.  Previously, a line has been drawn (in law, in some countries) between gene therapies that treat problems in somatic cells, like muscular disorders, and modifications that are heritable.  Though mitochondrial donation is aimed at preventing disease, some worry that it will open the door to other types of germline modifications and the creation of ‘designer babies.’  These concerns are misplaced for two reasons.

First, it is unclear why the somatic-germ cell distinction in gene therapy should be our primary criterion rather than a distinction between healing and enhancing.  If our problem with the creation of designer babies – which, given the current state of reproductive medicine, embryology, and genetics is a very long way off – has something to do with satisfying petty parental preferences, we should focus our efforts on preventing the use of powerful reproductive procedures for insufficiently serious purposes.  We should debate what counts as the prevention of a serious genetic condition and what counts as enhancement, not ban germline modifications that are aimed at eradicating disease and reducing suffering.

A second reason that the emphasis on germline modification is misplaced is that technology is already available to select, if not modify, embryo’s genes.  Pre-implantation genetic diagnosis (PGD) is a technique that is used to test embryo’s genes during in vitro fertilization, before deciding which embryos to transfer into the woman’s uterus.  PGD can be used to select against serious heritable diseases, but it can also be used to select for sex, milder disabilities such as deafness or dwarfism, and children who can serve as tissue donors for sick siblings.  The US has no laws or regulations on the acceptable usage of PGD, and elective sex selection is relatively common.[3]  It seems inconsistent to object to the use of mitochondrial donation to prevent serious diseases when a technique that uses selection, rather than modification, to choose non-medical characteristics of future generations is currently unregulated and in use.

Finally, if we decide that the germline criterion must continue to be respected, even when using genetic modification to prevent disease, we could require that mitochondrial donation only be used to create male embryos.  We could use sperm sorting to select male sperm which would be combined with a female pronuclei and an enucleated egg with healthy mitochondria.  Since mitochondria are inherited maternally, if only males are created, the mitochondrial DNA would not be passed on to the next generation.  Though many people find sex selection objectionable, there is precedent for performing sex selection for medical purposes.  For example, PGD is sometimes used to select female embryos to avoid passing on X-linked disorders.

It is understandable that new developments at the intersection of reproductive medicine and genetic technology raise concerns about our attitudes towards future generations, especially given the history of eugenics.  However, we should regard mitochondrial donation for what it is – a tool designed to allow mothers suffering from mitochondrial disorders to have children to whom they are genetically related – rather than focusing on potential future abuses in the general area of genetics and fertility.  Though it is important to exercise caution in the modification of heritable genes, the distinction between healing and enhancing should be our primary criterion for deciding what techniques are ethical and permissible.

Michelle Bayefsky is a senior at Yale University, where she was elected to Phi Beta Kappa and founded and serves as Editor-in-Chief of the Yale Bioethics Journal.  After working as a research assistant at the Yale Interdisciplinary Center for Bioethics for over two years, she will graduate in May with a B.A. in Ethics, Politics and Economics.

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[1] Last week, the UK’s Human Fertilisation and Embryology Authority, the governmental body responsible for regulating reproductive medical care, released draft guidelines that would permit mitochondrial donation in humans. Children of mitochondrial donation could be born in the UK as early as next year. See Telegraph article here.

[2] Lewis, Ricki. "FDA Considers Mitochondrial DNA Replacement." Medscape Medical News. Medscape, 26 Feb. 2014. Web. 09 Mar. 2014. <http://www.medscape.com/viewarticle/821115>.

[3] Ginsburg, Elizabeth S., Valerie L. Baker, Catherine Racowsky, Ethan Wantman, James Goldfarb, and Judy E. Stern. "Use of Preimplantation Genetic Diagnosis and Preimplantation Genetic Screening in the United States: A Society for Assisted Reproductive Technology Writing Group Paper." Fertility and Sterility 96.4 (2011): 865-68.

Occupy Womb

By Naomi Scheinerman

Sweden is the first and only country to complete not just one, but nine, uterine transplants. The women were either born without a uterus or had it removed because of cervical cancer and received wombs donated from relatives. The ultimate goal, of course, is to become pregnant and now four of those women have also had embryos transferred into their new wombs (through IVF). The womb transplants are meant to be temporary i.e. they will be removed after birth. The discussions surrounding these procedures invoke a number of important ethical and philosophical questions related to the goals of medicine, resource allocation, and procreation.

One of the main concerns surrounds the ethicality of purposeful risk to the wombs’ donors, recipients, and occupants (the fetuses). In other words, absent a valid medical reason, can risk ever be ethically permissible? Further, are these procedures legitimate uses of medical resources in light of the risks? The recipients must take drugs and be monitored closely throughout their pregnancy to ensure that their bodies do not reject the uterus. It is also relatively unknown how a fetus will fare in a transplanted womb and in its future life.

Calculations of risk entail weighing the relevant options. In the case of medicine, risky surgeries are usually only conducted if the alternative (not having the surgery) is even riskier (such as a bone marrow transplant for a cancer patient). Thus, in the case of a well-functioning, decently healthy individual (such as the women in Sweden), engaging in a significant surgery, and putting relatives through an intensive surgery as well, seems to carry avoidable risks.

Another way to frame this concern: are womb transplants medically necessary or enhancing? Medically necessary procedures are those that save the individual’s life, such as a heart transplant or a blood transfusion. Medical enhancements are not crucial to an individual’s life but make it better, such as a cochlear device for a deaf person or LASIK eye surgery to correct imperfect vision. However, the distinction between a medical necessity and enhancement is often difficult to defend and can crumble upon further scrutiny. Often, procedures we think of as enhancing dramatically “save” one’s emotional life which itself is morally significant enough to legitimize the procedure. For example, a face transplant for a burn victim is not medically necessary in the sense that the burn victim could survive without it, but can be socially necessary for future happiness and success. The implications of this distinction are important because we tend to allocate our scarce medical resources for medical necessities and view enhancements as illegitimate uses of these resources. And yet, we can concurrently make the case that enhancements do some significant medical good. For a woman who desperately wants to be pregnant the distinction between necessity and enhancement begins to collapse.

My final concern, which most powerfully objects to womb transplantation, is whether it is a healthy model of procreation in today’s society. In a world filled with opportunities for sperm and egg donation, surrogacy, and now womb transplants, I worry that there is an undo emphasis placed on the desire for a genetic connection with one’s offspring. I have no doubt that it is a miraculous thing to be pregnant and create a new life using one’s own genetic material, and perhaps also the genetic material of one’s partner. However, I worry when that is the most important desire for a family. Instead we should focus on building healthy relationships with one’s child and finding a home for children worldwide. I worry that womb transplants and IVF can and do detract from what’s important about procreation and place undo emphasis on carrying to term and having a genetic relationship with one’s child.

Naomi Scheinerman is a Research Assistant at The Hastings Center. She graduated Phi Beta Kappa, with high honors and in distinction from the University of Michigan in Ann Arbor, where she received bachelor’s degrees in philosophy, political science, and Hebrew and Jewish Cultural Studies. She contributes a bi-weekly column on reproductive health.