@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.

Thinking Ahead, Preventing Tragedy

By: Mohini Banerjee

When natural disasters become central to bioethics discussions, it usually invokes a public health lens. Furthermore, the ethics involved concern disaster response, otherwise known as the aftermath. As detailed in Sheri Fink’s Five Days At Memorial, ethical quandaries arose when they were unable to evacuate certain patients from a flooded hospital. Health care professionals faced the demand to both create and execute a moral equation determining who could survive if moved and who would most likely survive. In the midst of Hurricane Katrina’s wrath, some doctors euthanized patients that could not be evacuated, saving them from languishing in agony as their machines failed. These physicians had some ethics training, but nothing that could have prepared them for that situation.

If we had to make difficult decisions in the midst of a disaster, what would we choose? During Hurricane Katrina many also took to the streets to find food and services when no help came. This led to horrific police and civilian violence. The racial and socio-economic implications of the fallout in the Gulf states only add to the tragedy. Although there are immense problems with the response to Katrina, we must also consider disaster preparedness. Foresight and energy could preempt and thus mitigate many of the worst disaster outcomes.

One difficulty in the ethics of disasters, as opposed to issues that arise in clinical settings, is that one cannot assume a controlled environment. There is no time to consult an ethics board, family members, or the courts. Disaster situations involve technological and communication failure on massive scales, such as falling telephone lines and power outages. Health care professionals also grapple with their own safety in ways foreign to most instances of medical care. For example, as Fink outlines in her book, many of the doctors at Memorial struggled with dehydration and injuries themselves from the hospital conditions. Lastly, national and state-based plans often cannot be implemented on the local level, lacking a detailed understanding of the community’s needs. For all these reasons, work done ahead of time could insure fairer outcomes in the aftermath.

Disaster preparedness is not a new phenomenon, and it would be foolhardy to dismiss the long efforts to mitigate ensuing chaos. Yet, in the world of ethics, how we prepare is less discussed than what happens when the chaos is in full force. What I suggest is a closer look at the methods for protecting ourselves and our communities when the unimaginable hits. The principles that govern disaster response, such as the responsibility to provide each person with life-saving care and protection, will only go so far. Since disasters often undermine the infrastructure facilitating medical care, evacuation, or housing, it is especially important to implement community-based initiatives to meet these needs.

The San Francisco partnership, established by Mayor Edwin M. Lee this past summer, epitomizes a community ethic in disaster preparation. It is a coalition between the Department of Emergency Management and Bayshare, a collection of sharing economy organizations. The partnership insures that during disasters people could use sharing economy mechanisms for free. Services include Lyft, a ride-share service that would transport emergency medical care and basic supplies. Another is the room rental scheme, Airbnb, which provides housing for people with nowhere to go. Providing these services in a disaster’s fallout would use the community’s resources to help itself. The San Francisco model demonstrates how members of the local community could use their resources to aid one another.

Although internationally recognized ethics standards for disaster response exist, preparedness is seldom discussed considering equality or fairness. Oftentimes preparing for disasters is left to the government or to the individual, such that those with less lose out. Further, the obligations of individual families extend beyond themselves and complying with the government’s safety measures. Strategies, such as San Francisco’s, which distribute much needed and underutilized resources facilitate a community’s ability to help itself.

It is not only preferable, but ethically necessary, to have a system in place that ensures sharing resources. Governmental bodies should not be the sole providers of resource planning. Community members understand best what is available locally and are situated to help first responders prevent harms within a chaotic situation. While each person will first provide for her own family’s safety, the next considerations should extend to those in one’s proximity. Preparing as a community will help foster social cohesion, which again feeds back to those difficult decisions. Gaining more responsibility for ourselves and for those around us can avert the desperation that so many have already suffered.  

Mohini graduated from Smith College in May 2013 and is a research assistant at The Hastings Center, an independent non-profit research institute in bioethics. She founded Bioethx Under 25 in January and acts as Editor in Chief. For interest in the blog please email her at bioethicsunder25@gmail.com.

Lowered Abortion Rates: Good or Bad Sign?

By: Naomi Scheinerman

On Monday, February 3, 2014, the Guttmacher Institute published a study revealing that U.S. abortion rates are the lowest since the Supreme Court upheld the right to have an abortion in Roe v. Wade (1973). Although the study did not investigate reasons for the decline, it concludes that it was not due to the surge of abortion access restrictions passed from 2011 to 2013, nor was it due to a decreased number of providers. The authors also found that there was a proportional increase of early stage abortion inducements to later surgical procedures.

So, what can we conclude about the study? Why have abortion rates gone down? And, how should we feel about lowered abortion rates? Is this a good thing? What might this indicate about our society?

The Guttmacher Institute’s overarching goal is “to ensure the highest standard of sexual and reproductive health for all people worldwide.” Do lowered abortion rates mean that women are achieving a higher level of sexual and reproductive health in connection with the Institute’s goals? On the one hand, women should have access to means of contraception: the pill, condoms, IUD’s, etc. On the other hand, women should also have access to abortions. It seems that lowered abortion rates indicate a rise in access to contraception, increased freedom for women, and overall awareness of rights, access, and sexual health. So, abortion rates lowering (when it is not due to restrictions or scarcity of providers) is a good thing.

If we peer further, are lowered abortion rates beneficial for reasons other than their indications of other rights (access to contraception) in society? In other words, could they be ethically preferable? 

What differentiates an action between being ethically preferable and permissible? In order to determine ethical preference, it is important to compare the action being evaluated with its alternatives. The relative value of an action must be viewed in context with the array of other possibilities. Ethical permissibility indicates that the action, in isolation, is itself ethically allowed. Planting a tree to help with carbon sequestration is ethically permissible, and can often be ethically preferable (to chopping down a tree, for example), but not ethically preferable to taking public transportation to avoid carbon emissions in the first place.

The act of having an abortion itself is ethically permissible because a woman has the right to determine what happens to her body insofar as she does not harm another living human being. A fetus, until viability, does not have the moral status of a human being. The fetus deserves our respect, but ultimately its life should not be valued above either the physical or emotional welfare of the mother. Thus, for any reason: whether she and her partner’s condom broke or she was raped, a woman should have access to an abortion, and not be compelled to undertake the burden of bringing a life into the world.

Thus, in the case of abortion, the alternatives are often not preferable. If a woman feels she is incapable of having a child or cannot offer that child the best life possible, it is ethically preferable to terminate the pregnancy. However, in light of access to contraception, education, and increased awareness of women’s rights that can avoid an unwanted pregnancy, abortion is not ethically preferable.

As such, we return to the conclusion that lowered abortion rates are good insofar as they indicate increased access to contraception and awareness of women’s rights. Abortions are themselves ethically permissible; therefore, there should not be a huge cause for moral concern if there is an increase of them. However, in light of ethically preferable alternatives, we should celebrate decreased abortion rates, which often herald opting for those alternatives.

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. 

An Obligation to Opportunity

By: Samantha Page

This post is written in response to Bonnie Poitras Tucker’s piece “Deaf Culture, Cochlear Implants, and Elective Disability,” with reference to Norman Daniels’s Just Health: Meeting Health Needs Fairly. In her article, Tucker first establishes the difference between “deaf” and “Deaf” to shed light on the divisive question of giving cochlear implants to children. While people in both the deaf and Deaf categories identify as having impaired hearing, members of the latter group separate themselves from hearing society through a distinct cultural identity while deaf people do not. In affiliation with their culture, Deaf people protest the use of cochlear implants as an attack on their community.

An essential point in Daniels’s work is the idea that health is equal to “normal functioning” (Daniels 2008, 35). To Daniels, this means that a person has a “full range…of opportunities,” in which she can pursue what is expected to be a normal lifestyle. When a person encounters an obstacle to her health that interferes with this expected way of life, Daniels calls it a “pathology” (Daniels 2008, 35, 37). In this post I apply Daniels’s ideas to Tucker’s discussion on cochlear implants to argue that it is unethical and impermissible for parents to withhold cochlear implants from children who have impaired hearing. 

Cochlear implants manifest the miraculous abilities of medicine by “restoring hearing and speech understanding to…[the] severely or profoundly deaf” (Tucker 1998, 6). One complication is that, to yield the best results, the devices must be put into effect in patients as young as possible. Most often the potential recipient is a child who lacks the full ability to understand and express her wishes on the matter. This forces parents to ultimately make life-altering decisions on their child’s behalf, raising the question of whether parents have an obligation to promote their child’s “normal functioning.” Though supporters of Deaf culture argue that cochlear implants destroy their community and should not be imposed onto deaf children, the costs of forgoing a resource that could ward off such “pathology” greatly outweigh the benefits associated with Deaf culture (Daniels 2008, 37).

When parents who have financial means to give their deaf child cochlear implants choose not to, they deliberately do not treat their child’s “impairments” and are willfully allowing her deafness to reduce her “range of…opportunities” (Daniels 2008, 35). This acceptance of the impairment is a form of neglect on the parents’ parts because they are not fulfilling their roles as guardians to best promote their child's health (Daniels 2008, 35). It is considered negligence for parents not to care for their child if she has the flu or a broken bone, and the costs and limitations of being deaf, if untreated, are far greater than these ailments.

As a defense against the implementation of cochlear implants, supporters of Deaf culture argue for its maintenance as a distinctive identity, leveraging the importance of their way of life against the benefits of being part of hearing society. Created from a need for a strong community where deaf people would not feel isolated or disadvantaged, Deaf culture is highly dependent on the shared language—American Sign Language (ASL). With this as its keystone, though, Deaf culture cannot be limited strictly to the deaf, because hearing people have access to ASL as well. The implementation of cochlear implants in deaf children is not necessarily permanent, either, because patients have the power to turn them off if they later wish to do so. However, not allowing a deaf child access to the device is an irreversible decision. Earlier implementation yields results, such as improved hearing and speech abilities, that are far greater than those gained by implementation in older patients. In attempts to avoid the destruction of Deaf culture, parents who do not give their deaf child cochlear implants deprive her of the autonomy to choose the hearing world, and potentially the Deaf one as well.

Parents should strive to give their child the most opportunities possible; because, as guardians of her basic needs their responsibilities include promoting health. The importance of timing when treating deafness with cochlear implants, and the accessibility of benefits associated with the Deaf community to people outside of that cultural identity, attributes a net loss of opportunities to a deaf child who does not receive the implants. Therefore, parents should not be allowed to forgo the procedure on behalf of their children when the device is within the family’s means. When parents do not provide their deaf child with cochlear implants, they limit their child’s future opportunities to choose to participate in hearing and Deaf culture. Additionally, they limit her physical autonomy through a potential life independent of the many aids deaf people need daily to succeed. However, when parents choose to give their deaf child cochlear implants they allow her greater future opportunities by giving her access to the hearing world, as well as providing her the option to participate in Deaf culture, if she wishes. 

Samantha Page is a first-year student at Smith College, where she was first introduced to the field of Bioethics. She is interested in studying American history and art history.

Works Cited:

• Daniels, Norman. Just Health: Meeting Health Needs Fairly, Cambridge 2008.

• Tucker, Bonnie Poitras. “Deaf Culture, Cochlear Implants, and Elective Disability,” Hastings Center Report 28, no. 4 (1998): 6-14.