Showing posts with label Reproduction. Show all posts
Showing posts with label Reproduction. Show all posts

Wednesday, January 28, 2015

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.

Thursday, December 18, 2014

Congratulations Finalists

Thank you to every person who submitted to the Daniel Callahan Young Writers Prize! There were nearly thirty excellent submissions and the five finalists have been chosen. 

Their essays will be read by the following panel of judges:

Daniel Callahan, PhD-- As President Emeritus and co-founder of The Hastings Center, Callahan helped shape the bioethics field. He has written over 47 books and has had hundreds of peer-reviewed publications and op-eds. 

Michael K. Gusmano, PhD-- Gusmano is a a political scientist who holds adjunct appointments at Columbia University and Yale University and is a Research Scholar at The Hastings Center. He has published widely in the areas of health policy, aging, and comparative welfare state analysis.

Laura Haupt, M.A.-- Haupt is the Managing Editor for two peer-reviewed bioethics journals, the Hastings Center Report and IRB: Ethics and Human Research. Her background is in English literature and she has helped edit a number of special reports for the Hastings Center Report, including LGBT Bioethic: Visibility, Disparities, and Dialogue. 


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Daniel Callahan Young Writer's Prize Finalists

Avigile Baehr, MD/MBE Candidate, University of Pennsylvania
"DNR Ebola: Is There a Professional Obligation to Provide Treatment?"

Michelle Bayefsky, Pre-Doctoral Fellow, NIH Department of Bioethics
"Uterine Transplant: Where, If Anywhere, Should We Draw the Line?"

Rachel Conrad, MD Candidate, Baylor College of Medicine
"The Ethical Crisis in Medical Training"

Michael DiStefano, Research Assistant, University of Pennsylvania
"Religious Values and Refusal of Highly Effective Life-Saving Treatment by Minors"

Tim Rubbelke, PhD Candidate, St. Louis University Center for Healthcare Ethics
"The Paradox of Government Vaccine Mandates" 

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We anticipate an announcement of the winner in mid-January. Thank you again to all the participants, we look forward to posting some of the other compelling submissions to this blog in the coming months. There were far more fantastic entries than could be chosen. 

Thursday, July 17, 2014

Hobby Lobby and Freedom from Religious Employers

By Naomi Scheinerman

The decision in Burwell v. Hobby Lobby Stores has been severely scrutinized, from rebukes against corporate personhood to feminists decrying that the Court’s majority, five conservative male judges, devalue and deny women’s personhood. Justice Ginsburg’s scathing dissent and Justices Sotomayor and Kagan’s equally passionate disapproval offer a gendered lens that is impossible to ignore. And further, the Hobby Lobby decision actually does far more harm than good in protecting religious freedoms.

First, Hobby Lobby’s anti-contraception argument relies on fallacious scientific claims that will facilitate further violations of the corporation’s religious beliefs. Hobby Lobby objects to the two IUD’s and Plan B and Ella (emergency contraception) by claiming that using them is akin to having an abortion. This is false. Plan B and Ella prevent ovulation which prevents pregnancy after sex. The International Federation of Gynecology & Obstetrics published a study concluding that because Plan B does not inhibit implantation, it is therefore not an “abortifacient,” a substance that induces abortion. Because Hobby Lobby argued that emergency contraception equals abortions, when in fact emergency contraception does NOT equal abortions, the Court should have thrown out Hobby Lobby’s arguments. As a result of this decision, women who work for Hobby Lobby and are now denied emergency contraception coverage will be much more likely to seek an abortion in their future. Half of women who purchase Plan B do so because of unplanned pregnancy (which includes both consensual and non-consensual sex). Hobby Lobby is paving the way for more abortions, not fewer.

Second, Hobby Lobby’s small closely held corporation’s religious freedoms are being protected at the expense of the freedom from religious imposition on its employees who rely on health insurance to access reproductive freedoms. A closely held company is one in which five or fewer people own the majority of the company. Not only is it strange to treat a corporation as a person with its own convictions, but this decision shows that the Court prefers the religious arguments of a few people in charge over the views of many more who actually work for the corporation. The Religious Freedom Restoration Act of 1993 (RFRA) – the legislation that Hobby Lobby claimed the contraception mandate violated - was originally enacted to protect Native Americans from laws that burdened their exercise of religion. As such, the RFRA was originally constructed to protect employees from theburdensome religious standards of employers and laws. In fact, Catholic and other Christian denominations were even opposed to the RFRA initially because they thought it would protect the “right to a religiously-motivated abortion.” Even if an employee of Hobby Lobby does not have a religious conviction to use contraception, the employers of Hobby Lobby are imposing their religious views by forcing the employees’ actions to align with their own religious practices that forbid abortions. An individual at Hobby Lobby, who is not one of the five people in the entire corporation who wants to prevent contraceptive access, is burdened, something the RFRA was meant to prevent, not allow.

Third, there is real danger in granting religious freedom to corporations that claim exemptions to laws. In Callahan v. Woods, for example, taxpayers used the RFRA to object to the use of social security numbers, arguing that they related to the “mark of the beast.” The Court dismissed this argument. Since the release of the Hobby Lobby decision, many companies have come out of the woodwork, claiming religious exemption to other laws that ban discrimination in hiring or protect women’s reproductive freedoms. The Court ruled that the religious freedom is protected when the law imposes a “substantial burden” on the corporation. This should be interpreted to what the corporation does (its business and goals) rather than how the five or fewer owners feel about the actions of their employees. Is it a substantial burdensome to the selling of paint and brushes to allow female employees to obtain emergency contraption or an IUD?

My last fear is that real and compelling claims of religious exemption, wherein an employer or employee has a true and ethical, religious  belief that a law severely infringes, will become watered down by the numerous unethical claims. About 90% of all American businesses fit the category of closelyheld.  Corporations should not be in the business of determining the appropriate health care package for employees based on religious convictions when it overrides the individual employees’ values. This places an inordinate amount of control on employees’ actions outside the office, such as their reproductive decisions, something the Supreme Court declared was protected by the right to privacy. Employers should not define employee competency by her personal life decisions, but rather based on qualifications and aptitude for the job. This is why employers should not discriminate against gay applicants and should not dictate the sexual freedom of its female employees. Justice Ginsburg accurate identified the dangers of the Hobby Lobby decision: it validates inordinately unethical claims of religious exemption that employers have no right to make.

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.

Friday, June 27, 2014

Medical Doctors Should Remain "Medical" Doctors

By Naomi Scheinerman

Earlier this year, Britain’s Faculty of Sexual and Reproductive Health, a faculty of the Royal College of Obstetricians and Gynaecologists (RCOG), issued guidelines establishing that the faculty’s Diploma qualifications include a “willingness to prescribe all forms of hormonal contraception, including emergency contraception, regardless of personal beliefs.” Though welcome to undergo the training, those who “hold moral or religious reservations about any contraceptive method,” will not be able to “complete the syllabus [rendering] candidates ineligible for the award of FSRH Diploma” - a legal requirement to practice obstetrics and gynecology in England. Though clinicians may abstain from both performing and counseling regarding abortions, they are required to provide full information on options for unplanned pregnancy and make “timely arrangements” for the patient to see a doctor who is comfortable counseling on abortions.

In this post, I will address three questions: Does the Faculty have the authority to issue guidelines on this matter? If so, are these the correct guidelines to issue? And should we make exemptions to those who hold conscientious objections for religious reasons?

Does the Faculty have the authority to issue guidelines on this matter?
The medical world offers numerous examples of authoritative bodies passing rules of ethical and appropriate treatment. For example, guidelines have codified that informed consent must be acquired from a patient undergoing a medical procedure or participating in a clinical drug trial. Another example: U.S. federal law (HIPPA) protects a patient’s privacy of personal health information such that doctors may not share information with others without the patient’s permission. The authority of the Faculty to issue program guidelines regarding its training is perfectly consistent with our expectations that the medical community governs practitioners’ medicine to ensure ethical and safe care. Medical care cannot be divorced from value judgments, and thus medical training must be considered alongside medical decision making.

Is requiring willingness to prescribe contraception an acceptable use of the Faculty’s power to dictate appropriate medical practice?
I argue that the job of prescribing birth control has become a central part of the job of a gynecologist, and it should be for a number of reasons. Birth control is an ethical and safe option. Women have the right to control their reproduction, and doctors therefore have an obligation to provide access to the means to do so. Patients do not have unlimited rights to services from their doctor - a doctor could and should refuse to operate on an individual who does not need to be operated on. Contraceptive access, in contrast, is not an extravagance, but rather is an important tenant of women’s health. More than just allowing her to regulate her period and perhaps mitigate the negative and uncomfortable experiences of her “natural” cycle, contraception allows women to practice family planning, which has far reaching implications for her overall wellbeing by affecting her job, income, relationships, social network, and status. These results may also be beneficial for her family relations and friendships, as well as, of course, the wellbeing of a child from a pregnancy she neither planned nor wanted. Furthermore, denying a woman access to birth control denies her valid medical desires. Granted, what constitutes a medical necessity is illusive: ultimately numerous medical and nonmedical treatments lead to better welfare and happiness, but it seems strange to classify them all as necessary. However, because birth control affects the body chemically and hormonally, it should be classified under the purview of medicine, and therefore falls within the medical profession.

Should we make exceptions for conscientious objectors, particularly religious conscience objectors?
Just as a conscientious objector to informed consent should be barred from conducting clinical trials, so too should a gynecologist who refuses birth control to women. First, the merits of an argument for conscientious objections must be evaluated, regardless of whether it is religious or nonreligious. One of the primary arguments against contraception is that they are akin to abortions and therefore immoral. This argument is invalid because it relies on a false claim: contraception prevents pregnancy, it does not terminate it. Take for example the anti-vaccine movement: when deciding whether to allow doctors to refuse to vaccinate children, we should only give weight to arguments that are based on scientific claims regarding the safety of vaccines.

Another argument given against contraception is that it increases the rate of casual sex, in particular sex out of wedlock. First, this is a faulty understanding of statistics: access to birth control neither increases nor decreases rates of sexual intercourse, but instead makes it safer. A similar argument was made in the case against the HPV vaccine trials: developing a vaccine that protects against certain kinds of cervical cancers would make girls more promiscuous. This value-loaded claim attempted to maliciously bar an important way to increase sex safety for women and was then proved to be factually incorrect. Even if contraception did increase the rates of sex, either before or after marriage, the argument must prove why this is negative.

Religious reasoning should be scrutinized as vigorously as nonreligious reasoning. For example, the value of having a family is often cited in opposition to contraceptive use by referring to religious texts. However, one could just as easily interpret the value of family in another way: birth control allows women (and their partners) to choose when to have a family, thereby making a more secure, safe, and well-off household. Religious preferences in the medical world should be tolerated only if they do not harm the patient’s welfare. Denial of birth control can and does cause such harm. Religious objectors claim that a patient could see a different doctor, but there are many examples in which this is unfeasible. For instance, a young teenager who wants to become sexually active and is hiding her doctor’s visit from her parents may not simply be able to switch physicians or may be too intimidated to try after being driven off the first time.


The Faculty’s rules are not only permissible, they are imperative for women’s health. They do not suggest that all women should seek birth control or will, nor do they demand that all gynecologists prescribe birth control to all women. Ultimately, the Faculty’s rules are valid because they demand that doctors provide ethically valid and vital medical options to their patients.

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.

Wednesday, April 2, 2014

Hobby Lobby and its Hypocrisy: Religious Demands on Others and Investment in Contraception

By Naomi Scheinerman 

Last week, the US Supreme Court heard oral arguments from Hobby Lobby (a chain of craft stores) and Conestoga Wood (a cabinetry company) who both claim religious exemptions from the Patient Protection and Affordable Care Act (ACA) contraception coverage. A recent story from Mother Jones reveals that Hobby Lobby has actually “spent millions of dollars on an employee retirement plan that invested in the manufacturers of the same contraception products the firm’s owners cite in their law suit.” In addition, the company also provided insurance plans to its employees that covered the very contraception they now reject for years before the ACA mandate required it. Although this information may not be crucial for the Court in its decision making, these revealed factors call into question the veracity and legitimacy of Hobby Lobby’s religious objection alongside considerations of justice and ethics in potentially granting an exemption.

For example, one concern is whether the Court should consider arguments based on faulty scientific claims. Hobby Lobby argues that they have no moral objection to the use of the majority of the contraceptives required in the mandate and will continue to cover access to these. Rather, they object to the copper and hormonal intrauterine devices (IUDs) and Plan B and Ella, “emergency” contraception taken after intercourse. Hobby Lobby claims that because these prevent a fertilized egg from implanting in the uterus, they function as abortions. Hobby Lobby is sadly not alone in erroneously labeling Plan B and Ella as so-called “abortion pills,” when in fact they do not terminate pregnancy because they work before pregnancy begins. Even if Hobby Lobby has a valid religious objection to abortions, they are fallaciously applying it to this case.

Legally, the Court has also been asked whether corporations can even claim religious exemptions. Hobby Lobby has Christian owners, but its employees are not exclusively Christian and therefore it is hard to define it as a distinct Christian corporation. Although the Court has ruled that corporations operate as individuals in terms of campaign finance laws, it has yet to extend this argument to other realms. This brings me to one of the most pressing questions: Does claiming religious exemption actually impose a religious ruling on others? Though Hobby Lobby claims it does not want to be imposed upon, its attempts to deny coverage of IUDs, Plan B, and Ella impose on its employees because they may have no moral objection to accessing these forms of birth control.

Further, when do religious exemptions to health coverage end? At what point should we consider right of access to be absolute and religious exemptions as inferior claims because they overshadow a more pressing moral concern in society? Can Hobby Lobby claim objections to vaccinations? Cancer treatments? Kidney transplants? Some religious groups do, and the Court would be quite quick to throw out those cases as extreme and an overt denial of rights of access. Hobby Lobby’s claims against IUDs, Plan B, and Ella are not so different. Emergency contraception can be vital for a woman who was raped or just wants the freedom to live a life without a child imposed upon her. Research has shown that unintentional pregnancies are linked with delayed prenatal care, low birth weight, maternal depression, prevention of education and jobs otherwise accessible to the mother, and family violence. These are good health reasons to offer the access and claim any denial of access as an abuse of religious arguments and an imposition on others’ freedoms from religion.

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.

Wednesday, March 19, 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.



[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.

Wednesday, March 12, 2014

4 Months 3 Weeks and 2 Days

By: Ty Bourgoise

This is part of a series on films and other media relevant to bioethics. Like recommendations, these reviews are here to help you find intelligent media you may or may not have heard of. So anything I review here, you can assume, bears my endorsement--go see it, read it, enjoy, and think.

Ceausescu-era Romania is grey, blue, and lit everywhere by the special effect of halfway burnt out bulbs. In the dimness, women throughout Gabita and Otilia’s dorm are concerned with how they look; judging by the number of cosmetics trading hands, beauty is one of those few freedoms an oppressed Romanian woman is allowed. A sane abortion, however, is one they aren’t.

In Christian Mungiu’s Palme d’Or winning film, 4 Months 3 Weeks and 2 Days, we see the extent to which they aren’t, and more. Very much more. The basic premise, though, is that Gabita, who needs an abortion, recruits her smarter and more practical roommate, Otilia, to handle the logistics. What unfolds is focused less on Gabita than Otilia. The result is something more thrilling and horrific than the best thrillers and horrors.

Because abortion is highly illegal, Otilia and Gabita have to make the latter’s a secret. In fact, for the first 35 minutes of the film there isn’t a peep of it. Otilia runs around, paranoid, collects money, doesn’t book a hotel room, books one, sneaks into it, and there haggles with exactly whom you’d expect to sell illegal abortions in 80s Romania: burly, enterprising, and charmless, a one “Mr. Bebe”, with his tools in a briefcase he does not want touched. A hotel bedroom is both his surgical and trading floor. Though, from the look on his, Gabita, and Otilia’s faces, you’d think this was a contract kill. This comparison might even overplay the apparent legitimacy of the procedure.

To “contract kill”, however, is the right comparison. Ceausescu’s regime was notably Orwellian with its conviction that aborting a fetus and murdering a person are morally equivalent. The acts are both relegated to the black market. But, in an odd scene, Otilia buys (presumably taxless) cigarettes from a random black marketer loitering in a hotel lobby. No one complains. Generally, it seems, everyone must tacitly trade in the illegitimate, only no one is willing to discuss or sympathize over this common misfortune. Such is the world that’s unsympathetic to Gabita and Otilia: it is inconsistent, and thereby amplifies the sense of possibility (and terror) that can be used to exploit these women. We know that their and Mr. Bebe’s punishment, if caught, would be draconian and arbitrary. 

After a nightmarish compromise, the success of the Gabita’s procedure is not the end of anyone’s troubles. Foil #2, after Mr. Bebe, is Otilia’s boyfriend, Adi—kind of attractive, kind of a jerk. After the lengths of secrecy we’ve seen Otilia and Gabita go, we’re nervous to see how he’ll react to Otilia’s news (Unwittingly, he partially funded Gabita’s abortion.). What actually happens, while perhaps not insane—he’s plain-vanilla clueless—makes the movie more interesting. We take his misunderstanding as a relief: well at least he didn’t flip out. But what a low bar for a support system! It’s not that Adi wants to call the cops, like others in Romania we presume would. He wants to fix Otilia’s anxiety; he just barely knows how to. “What if you needed [an abortion],” he says parroting Otilia’s question, “but it won’t happen to us!”

His misguided support causes us to wonder at Otilia’s interior state. Just because the Ceacescu has a clear stance on abortions, that doesn’t mean women receiving them have the space to process what they mean. Gabita wants to finish college; Otilia wants Gabita to be able to do so. But when it comes to the fetus itself—what is it? How does the intelligent Otilia comprehend her friend’s situation? After it’s done, Gabita tells Otilia she “got rid of it […] It’s in the bathroom.” From Otilia’s eyes we see that hump of cellular mass, unceremoniously thrown onto a towel in a trash bag on the bathroom floor. The fuller the picture gets, the less Otilia seems to know what she’s seeing. Or she’s horrified by what she sees. Or both, we don’t know: she doesn’t get an opportunity to express her feelings with anyone. Just silence.

The need to be silent is a force in these women’s lives, complicating what’s already complicated. Of note is that the movie has no soundtrack. Silence prevents Otilia from expressing frustration at one of her boyfriend’s family’s bougie dinner party. At said offensively aloof dinner party, Otilia, silently, endures a barrage of classist slights at her background. Silence is even in the very last scene, as Otilia finds Gabita, no longer in shock, treating herself to a platter from a wedding party in the hotel lobby: breaded brains, marrow, liver, and other charcuterie that blurs the reality between offal and delicacy, mirroring the person/thing distinctions that befall a fetus. We can see Otilia wanting to say something, but she’s so misunderstood from all angles, why would she? Intimacy, compassion and understanding seem like such far off longings.

Mungiu is happy to employ twisted ironies to ask questions of law, women’s rights, and biology. You’ll have to watch his movie to find answers, which are bound to be controversial. Though he’s clearly aghast of totalitarianism and exploitation, Mungiu is not merely, I believe, depicting a fight between good and evil. In that way, 4M3W2D doesn’t tie a bow on the morality of abortion. It just views it through x-ray vision.

As an American, I am struck by how easy it is to see 80s Romania as being like where I live. Romanian communism has traces of metaphor for how the US turns a moral and cultural blindeye on women who need abortions. Even in liberal states where abortionists are not murdered, women who opt for the procedure are stigmatized to the point of emotional isolation. But things can be worse, right? In some states, it’s been the path of least political resistance to forfeit women’s rights through legislation, pushing them into other states or just away; out of sight, out of…. Such spaces for women in those states are ripe for, 4M3W2D shows, horrific exploitation. So, best be abstinent, the logic goes, or act like nothing’s wrong. After all, who’s to blame for an unwanted pregnancy but you? Certainly you have no right to be upset about it.

Ok. Well. Mungiu gives Mr. Bebe a great metaphor to condense this attitude. “If the probe comes out, we’re done,” he harps in his medical instructions to Gabita. “You cannot move under any circumstances”. Don’t move. Don’t squirm, don’t cry, don’t cope. Barely express, but preferably don’t at all. Gabita may wail and yelp and nearly fail on all counts, but Otilia “performs,” disturbingly well. 

Ty Bourgoise is a writer living in New York.