@BioethxChat: Let Your Voice Be Heard

By: Jennifer Chevinsky

Bioethics is a field that should matter to everyone.  Whether you are a bioethicist, healthcare professional, student, patient, or member of the general public, you will encounter topics such as organ donation, body image, and end of life care. You will have decisions to make when you walk into your healthcare provider’s office, whether you choose to follow a treatment plan, or refuse traditional medicine.  Ethical questions are not always easy or straightforward, but having an opportunity to join with individuals from different fields and with varying levels of expertise can encourage a broader understanding of a multitude of aspects that alone, one may not have considered.

                               

BioethxChat is a live tweetchat account, started in October of 2013 by @jchevinsky to reach an interdisciplinary group of students, professionals, and members of the general public. Live chats are hosted every Monday at 8:30PM EST, and cover a large range of disciplines, but specifically focus on the intersection of science and ethics.  The chat has gained a reputation of asking ‘the hard questions,’ and encouraging open, honest, and respectful discourse.  The goal of each chat is to unpack the ethical aspects of a number of complicated topics within a particular theme, helping individuals to reach better-informed positions.

In the short time that BioethxChat has existed, ‘#Bioethx’ has been called “one of the ‘alwaystrending’ influential hashtags in healthcare on Twitter,” and was also included in George Washington University Masters in Health Administration’s list of “Top 5 Twitter Chats for Health Administrators.” With the verification of the ‘Bioethx’ hashtag and addition to Symplur’s Healthcare Hashtag project, individuals can access transcripts, analytics, and other data about the chat for free.

Additionally, the chat has been a great platform to join with experts and activists to discuss important ethical issues.  For example, BioethxChat joined with the Death with Dignity National Center to bring forth a discussion on ‘A Dignified Death.’ Other topics that have been covered include ‘Sexuality and Gender,’ ‘Disability Ethics: Autonomy, Rights, andDignity,’ and ‘Domestic Violence.’ The BioethxChat website includes a full list of topics that have been covered, along with their associated transcripts, and helpful resources.

Bioethxchat will consider hosting a chat on any topic related to the broad field of bioethics, and supports the submission of topic suggestions from anyone with a passion for open, respectful dialogue. One of our most recent chats focused on ‘Professionalismand Conflicts of Interest in Healthcare,’ a topic suggested by two of our followers, who served as guest co-hosts for the chat. Among the other questions on our list, we discussed the connection between professionalism and ethics, as well as the complications of financial associations between pharmaceutical companies and healthcare providers.  The chat encourages references to foundational cases, current situations in the media, as well as personal encounters or experiences.

Social media, and Twitter in particular, has the power to unite individuals from across the world for a live, spirited conversation. Bioethxchat uses this medium to further its goal of making bioethics more accessible and inclusive, recognizing that while everyone has a perspective, not everyone is given a voice.

Let your voice be heard and join the #bioethx community this Monday at 8:30PM EST!

Jennifer Chevinsky is a medical student at the University of South Florida Morsani College of Medicine SELECT, a collaborative program with the Lehigh Valley Health Network.  She is the Chair of the American Medical Association’s Medical Student Section (AMA-MSS) Committee on Bioethics and Humanities, as well as the Chair of the American Society for Bioethics and Humanities Student Affinity Group. She is the creator and moderator of @BioethxChat (#Bioethx).

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.

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.

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.