When You Are the Product and The Product Is Research

By Tim Rubbelke 

In mid-2014, researchers at Cornell University released a study titled “Experimental evidence of massive scale emotional contagion through social networks.”  The general idea of the study was that manipulating the Facebook feeds of users to display either primarily positive or negative posts caused subjects’ mood to shift accordingly.[1]  The study involved over 600,000 individuals.

Soon after the study was published, tech websites took notice.[2]  One of the obvious questions was whether the study participants had consented and whether they knew they were part of this study.

Facebook pointed to a broad clause in its “Data Use Policy” (DUP) as implying consent (although it seems no one in the study was aware of their participation.)  Some sites questioned whether the clause in question was even in the DUP at the start of the experiment.[3]

In light of the criticism, the Proceedings of the National Academy of Sciences (PNAS) (the journal that published the research) issued an Expression of Concern about the study.[4]  In it they noted that Cornell’s IRB chose not to weigh in on the research because the data their researchers received was anonymized and thus it was not human subjects research under the regulations.

While Cornell’s decision likely fits the technical description of the human subjects research regulations, it serves to highlight a very interesting question: when researchers (and institutions) receive data, should they be concerned about how the data was collected?

One hopes that Facebook carried out the experiment in an ethical manner, but without oversight we cannot be sure.  It certainly seems that at the very least many participants were subjected to a form of harm—by having their moods unknowingly altered to be sadder.  Perhaps more disturbingly, the study gives no indication of what would happen if a participant’s emotions swung far beyond the expected range.[5]

The rules and regulations surrounding academic research are designed to hold it to a high ethical standard, especially regarding the treatment of human subjects.  When data is shared between academic institutions then the research will be subject to the oversight of at least one institution.  In the case of data from private sources (such as Facebook) things are substantially murkier.  As the PNAS expression of concern noted, privately funded organizations like Facebook do not have to follow the Common Rule.  This is compounded by the fact that, as saying on the internet goes, “If you’re not paying for it, you are the product.”[6] Still, as one expert interviewed by CNet pointed out, the experiment carried out by Facebook went beyond the normal types of platform and advertising enhancement most websites carry out.[7] Furthermore if academic researchers are going to accept data from privately funded entities, and wish to maintain the high ethical standards, they should be cognizant of how the data was collected.

As Kahn, et al. note, it’s inadvisable to try and shoehorn a 20^th century research regulation apparatus onto a 21^st century world.[8]  And yet, as we try to bring the research oversight into the modern world we should be careful not to discard bedrock principles either. After all, public trust in academia is what fosters participation in research.

Tim Rubbelke is a PhD Candidate at the Saint Louis University Albert Gnaegi Center for Health Care Ethics. He contributes regular pieces on research ethics. 

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[1] http://www.pnas.org/content/111/24/8788.full.pdf

[2] http://www.cnet.com/news/facebooks-mood-study-how-you-became-the-guinea-pig/

[3] http://www.cnet.com/news/facebooks-emotion-manipulation-study-faces-added-scrutiny/

[4] http://www.pnas.org/content/111/29/10779.1.full

[5] Additionally there’s no information about the age of the subjects.

[6] http://lifehacker.com/5697167/if-youre-not-paying-for-it-youre-the-product

[7] http://www.cnet.com/news/facebooks-mood-study-how-you-became-the-guinea-pig/

[8] http://www.pnas.org/content/111/38/13677.full

Point and Counterpoint: Vaccines

This piece and the one that follows, “The Paradox of Government Vaccine Mandates” by Tim Rubbelke, present a point and counterpoint in the current resurgence of debate over vaccines. The first, by Kristen Senetar, outlines the positives of maximum vaccination while the second examines the problematic nature of enforcing this notion.

By Kristen Senetar

If you’ve turned on the news lately, you’ve probably heard about the outbreak of measles in the United States. Although the infectious disease has been considered eliminated from the United States since the year 2000¹, more than 120 people have contracted it since the beginning of this year.² How could an outbreak like this happen when there is a vaccine to protect us from measles? Should everyone be required to be vaccinated?

Vaccines are used to protect us against numerous diseases: measles, mumps, polio and countless others. The two-dose measles vaccine, which is spread out over several years, is 97% effective.³ The protection offered by this and other vaccines has helped our world become a much healthier place. While not 100% effective, vaccines have saved countless lives by offering a great defense against diseases that can often turn deadly. They are a quick and easy way to protect yourself and your family from illnesses. So why wouldn’t every parent vaccinate their child?

Some people do have concerns about vaccines. Over the past decade, there has been a growing fear that vaccines are linked to autism. However, the 1998 article, which stated that certain vaccines increase the risk of autism has been proven false, retracted from the Lancet, and the author of the paper later lost his medical license.⁴ There are also some individuals who cannot be vaccinated due to medical conditions such as certain allergies or suppressed immune systems. However, this number of individuals who cannot receive vaccines due to medical reasons is significantly smaller than those who can.

Should everyone be required to get vaccinated against measles and other communicable diseases?

The short answer is yes, everyone should be required to get vaccinated for everything possible, as suggested by their doctor. Except for those who have a specific medical condition and those with religious objections, most Americans can receive all vaccines. It is essential that the majority of the population gets vaccinated because it will support herd immunity. This notion is essential to public health, stating that if the number of people who are vaccinated is significantly greater than the number of those who are not, the vaccinated population can essentially protect the unvaccinated population. However, as the unvaccinated group grows larger and larger, herd immunity becomes less and less effective. Therefore, it is crucial that those who can be vaccinated do so in an effort to protect themselves and others.

There are also some people who have religious objections to vaccines. While religious freedom is a valued good, parents’ choices to not vaccinate endanger their children. If they will not vaccinate their children, then perhaps alternative actions should be put in place during periods of outbreaks, such as not allowing them to go to school. If an unvaccinated child were exposed to a disease, like the measles, and went to school before realizing what they had, they would be placing everyone at their school at risk of exposure. Even though most vaccinated children would go unharmed, the vaccine is not 100% effective. Keeping unvaccinated children out of school during times of outbreaks would help protect both the vaccinated and unvaccinated population.

Medical conditions aside, is it ethical to require everyone to vaccinate his or her children? This can be answered using two of the ethical principles: beneficence and non-maleficence. Take, for example, a newborn baby named Joe. Joe hasn’t been exposed to the germs of the outside world, like the cold virus or measles. He begins his life by staying inside most of the time, only going out for short walks or trips to the doctor’s office. Shortly after turning one, Joe receives his first MMR vaccine, as suggested by his doctor. As he continues to grow, Joe receives all the suggested vaccinations and lives a fairly healthy life. One day, while on an airplane, Joe, who is now a teenager, unknowingly sits next to someone infected with measles. Since Joe received the measles vaccine, no harm comes from the situation and he continues to be healthy as he grows into an adult. This scenario supports the principle of beneficence because the vaccines helped keep Joe healthy and protected against disease.

Now, imagine the same child, Joe, had parents who decided, for non-medical or religious reasons, to not vaccinate him as suggested by his doctor. Joe grew normally, just like kids who did receive vaccines, and led a fairly healthy childhood. One day, Joe, who is now a teenager, got on an airplane and unknowingly sat next to someone who had the measles. Since the measles is a highly communicable disease and the two were sitting so close together, Joe was exposed to the disease. Joe, who never knew the person next to him had the measles, felt fine after leaving the airport but a few days later starts experiencing symptoms. In a matter of days, Joe grows very sick and ends up in the hospital. After several long days, Joe begins to feel better and finally makes a full recovery. While the outcome of a full recovery is the best case, Joe experienced unnecessary suffering and harm. Therefore, the decision Joe’s parents made to not vaccinate him violates the ethical principle of non-maleficence.

Overall, vaccines were created to protect us from harm. No medical intervention is 100% effective or 100% safe. Some people do experience reactions to vaccines, but the majority does not. For most people, vaccines offer a greater benefit than they do the possibility of harm. Medical conditions aside, it is our duty to protect others and ourselves from diseases like the measles by following medical guidance to receive vaccinations. Who knows, the life you save might just be your own.

Kristen is currently a Regulatory Assistant at the University of Texas Southwestern.  She received a B.S. from Butler University in biology with minors in mathematics and chemistry and a Master's in Bioethics from Case Western Reserve University.  Her interests in the bioethics field include genetics, vulnerable populations and the rights of the unborn.

^1,3 "Measles Vaccination." Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, 4 Feb. 2015. Web. 14 Feb. 2015. <http://www.cdc.gov/measles/vaccination.html>.

² "Measles Cases and Outbreaks." Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, 14 Feb. 2015. Web. 14 Feb. 2015. <http://www.cdc.gov/measles/cases-outbreaks.html>.

⁴ Caplan, Arthur. "There Is No Other Side to the Vaccine Debate." Chicagotribune.com. 13 Feb. 2015. Web. 14 Feb. 2015. <http://www.chicagotribune.com/news/opinion/commentary/ct-measles-vaccine-jenny-mccarthy-autism-ebola-perspec-0213-jm-20150212-story.html>.

DNR Ebola: Is there a professional obligation to provide treatment?

By Avigile Baehr

Overhead pages are a staple of a busy ER. They give doctors and nurses a couple extra minutes to prepare for the quick action needed to save patients’ lives after strokes, heart attacks, or trauma. Now, imagine a case today:

Attention, ER staff. A 32 year old female at high risk for Ebola is coming in via ambulance with fever, vomiting, and unstable vital signs. If you are willing to accept the personal risk inherent in providing medical care to this patient, please report to room 3. Otherwise, please disregard this announcement.

A conditional appeal, not an imperative. A qualification that seems to run counter to the oaths that medical professionals take. And yet, a stipulation that hospitals and healthcare providers have considered as they decide how and whether to engage with this deadly infection. Ebola poses a very real threat to providers: two nurses contracted the virus while caring for a patient in Dallas, and California nurses have gone on strike in response to lack of preparedness for safely dealing with the infection. Given the disease’s documented transmission to healthcare providers, its high fatality rate, and the lack of an FDA-approved treatment or vaccine, what are our professional obligations in caring for these patients?

The classic principles of medical ethics are autonomy, beneficence, justice, and nonmaleficence. For the purposes of the ‘obligation to treat’ dilemma, I will assume that Ebola patients want to receive treatment, and I will not consider the ethics of experimental treatments as they might relate to the ‘do no harm’ principle. The principles of beneficence and justice, however, are particularly salient to this question. Healthcare providers are not merely obligated to do no harm, but we must also do good by our patients. Despite the uncertainty regarding some experimental treatments for Ebola, timely supportive care is unquestionably beneficial for these patients. Intravenous fluids help prevent shock and organ failure. Breathing tubes can keep patients alive until the virus runs its course. In certain cases, CPR can restart a heart and give someone a chance to survive. Fair and equitable treatment of Ebola patients requires that they be treated by the same clinical standards that apply to any other critically ill patient. By these core principles, the ethical imperative to provide medical treatment to Ebola patients is clear.

What argument can be made, then, for refusing to provide comprehensive medical treatment to a patient with Ebola?

Perhaps providers are only obligated by these principles once they accept someone as a patient. Can a doctor or nurse then ethically refuse to engage in a provider-patient relationship with someone suffering from Ebola, thus freeing him or her of any obligation to treat?

In routine medical care, maybe or maybe not. Most states have specific clauses that allow providers to refuse to provide certain treatment, such as abortion care, on the basis of moral objections. But, both the law and medical professional societies uniquely distinguish emergency situations as obligating medical treatment without qualification. The Emergency Medical Treatment and Active Labor Act requires that all hospitals who offer emergency care services and who receive any Medicare funding (read: the vast majority of US hospitals) evaluate and stabilize any patient who seeks medical care. This law was designed to prevent hospitals from refusing to treat uninsured or underinsured patients, but it also serves to promote fairness and ameliorate other treatment disparities. Similarly, the American Medical Association Principles of Medical Ethics dictates that physicians should be free to choose the terms in which they agree to provide medical care, except in emergencies. By virtue of their agreement to serve as medical professionals, providers implicitly engage in a patient-provider relationship with anyone who seeks urgent care at their facility.

But, perhaps there should be an exception for personal risk. A similar dilemma with concern for provider safety arose in the early days of the HIV/AIDS epidemic, but both the American Medical Association and the American Dental Association explicitly reaffirmed the duty to treat. Both professional societies appealed to fairness, stating that a patient should not be subjected to discrimination based on any characteristic, including disease status. There is a utilitarian argument to be made in support of this personal risk exception: if a provider treats and subsequently contracts Ebola from one patient, then that provider’s other patients might suffer. However, in the United States, healthcare associated transmission of Ebola remains an incredibly rare event, and a utilitarian analysis does not fall in favor of refusing to treat Ebola patients. Two of the 170+ people who had direct or possible contact with the three Ebola patients from Dallas contracted the virus, and no healthcare provider has died from Ebola transmission in the United States. To put this number in context, an estimated one in ten healthcare workers experiences a needle stick each year, placing them at risk for blood borne pathogens such as HIV and Hepatitis C. Providing care for sick patients inherently carries a certain degree of risk, but so long as providers are able to mitigate that risk through personal protective equipment and standard precautions, this does not excuse them from their professional responsibilities.

In conclusion, the basic principles of medical ethics unequivocally support treatment of Ebola patients. Ebola patients can present in critical condition and require timely medical care, thus placing them in the category of a medical emergency and further obligating providers and hospitals to accept these patients for treatment. Personal risk might be an important consideration, but the risk of transmission can be appropriately mitigated through proper protective equipment in the United States. Ebola patient in room 3? That announcement will never sound routine, but we must treat even these patients fairly and by the highest standards of medical care. 

Avi is currently an MD/MBE candidate at the University of Pennsylvania. She graduated from Vanderbuilt University in 2011 with a degree in biology and philosophy. This post was chosen as a finalist for the 2014-2015 Daniel Callahan Young Writer’s Prize. 

Breaking the Barrier Between Us and Others

By Chelsea A. Jack

Disability scholars aim to socially deconstruct naturalized, or seemingly inevitable and fundamental, understandings of what it means to be able-bodied or disabled.  As is the case with much postmodern writing, disability scholars forward their ideas with a general suspicion toward claims of knowledge fortified by dichotomous relationships, e.g. male/female, nature/culture, disabled/abled. However, this is not to say that actual differences do not exist among different groups of people. It is only to say that the barriers between “us” and “them” are never quite as solid as they appear, and that questioning those barriers allows for reimagined relations among community members.

Here, with disability scholarship as my primary example, I draw on the writings of three feminist scholars across different academic disciplines to show how a self-reflexive style can show the vulnerable relationship between the self and other. Such stylistic choices in favor of self-reflexivity betray the academic mantle of omniscience, or objectivity, that characterize arguments removed from the first person. Further, these choices can encourage reimagined relations with those we might understand as other.

When philosopher Eva Kittay has written against ideal theory in bioethics, she has made a strategically feminist move in her criticism of such theory and its proponents, specifically philosophers Peter Singer and Jeff McMahan: she self-reveals. For example, when she criticized Singer’s and McMahan’s theories concerning necessary cognitive and psychological criteria for the status of moral personhood, Kittay reveals that her own daughter, Sesha, was diagnosed as severely to profoundly retarded. Kittay shares that her own daughter might be counted among those whom McMahan has stipulated as undeserving of justice or life. Kittay purposes the developmental experiences of her own daughter as counterpoints to Singer and McMahan’s arguments that deny severely disabled and congenitally severely mentally retarded (CSMR) persons the status of moral personhood.    

In her own reflections on feminist ethnography, anthropologist Ruth Behar has contemplated the implications of acknowledging the place of “I” in the representations of others. In The Vulnerable Observer, Behar suggests that it makes scholars nervous to “forsake the mantle of omniscience” in favor of revealing personal stories into what we have been taught to think of as the analysis of impersonal social facts (1996:12). Both Behar and Kittay approach their own feminist scholarship with an appreciation for humility. Humility, for Kittay, requires both resisting the impulse to impose your own values on others and acknowledging what you do not know (2009:229). As Kittay writes about her own daughter Sesha, she admits, “What cognitive capacities Sesha possesses I simply do not know, nor do others. And it is hubris to presume” (2009:229). By utilizing a narrative from her own life, Kittay not only values humility as a maxim of ethical theorizing but her argument here is feminist for its ability to respond to the theme of vulnerability and marginality underlying subject-object formation.

When Kittay revealed her own relationship to disability, she created a space for conversation about “the tenuous nature of selfhood,” to borrow phrasing from feminist scholar Karen O’Connell (2005:219). In O’Connell’s analysis of the Romany term for the Holocaust – a term that translates to “the devouring” – she argues that attempts to expel unwanted people (i.e. the disabled, women, Jews) are never successful, since total expulsion is a myth. The existence of the self requires attempts to expel unclean and improper elements (218). In this sense, the constitution of threats to the self represents an exigency for the latter. The self, then, is a very fragile thing. This realization then becomes critical in the analysis of violence toward otherness, whether manifested against disabled people, people of color, or women.

How might self-revealing break down entrenched notions of “we” versus “them”? In what way do hypothetical analogies in ideal theory – such as Singer’s between cognitively impaired people and chimpanzees – reinforce epistemic structures of hierarchy and domination, where moral knowledge rests on obscuring the situated-ness of the author herself – situation meaning the circumstances that formulate our identity, i.e. race, class, gender – and the disturbing absence of disabled people in this theorizing? I personally admire those, such as Behar and Kittay, who betray the academic mantle of omniscience in order to advocate humility and recognize the vulnerability of the self.

Works Cited

Behar, Ruth. 1996. The Vulnerable Observer: Anthropology That Breaks Your Heart. Boston: Beacon Press.

Kittay, Eva. 2009. “Ideal theory bioethics and the exclusion of people with severe cognitive disabilities.” In Naturalized Bioethics: Toward Responsible Knowing and Practice, edited by H. Lindemann, 218 – 37. Cambridge.

O’Connell, Karen. 2005. “The devouring: Genetics, abjection, and the limits of Law.” In Ethics of the Body: Postconventional Challenges, edited by Margrit Shildrick and Roxanne Mykitiuk, 217 – 34. MIT. 

Chelsea is a Research Assistant at The Hastings Center. She graduated with highest distinction from the University of Virginia, where she received a B.A. in political and social thought and anthropology with a minor in bioethics. Her research interests include medical and legal anthropology, political and social theory, bioethics, and contemporary feminist thought. 

The Daniel Callahan Young Writer's Prize

Prize Summary 
This post is pleased to announce a new award, The Daniel Callahan Young Writer's Prize, sponsored by Daniel Callahan. Submissions will take the form of essays on a bioethics topic that are written as blog posts, designed for this blog, Bioethx Under 25. From all submissions, a group of finalists will be chosen and then an expert panel of bioethicists, including Daniel Callahan, will read the finalists' essays and award one prize amounting to $500. 

All submissions will be considered for publication on the blog and eligibility to be a finalist or receive the prize is dependent on willingness to edit and revise the essay for publication. Submissions will be judged anonymously. Please see guidelines below for further information. 

Prize Submission Guidelines

- Essays must be 500-1000 words and original submissions to Bioethx Under 25 i.e. never posted before on the blog. 

- Essays must conform to all other submission guidelines for the Bioethx Under 25 blog and thus, be clearly related to bioethics and be written in an accessible manner. Please refer to the blog's About Page for more information. 

- Essays will be accepted from September 10th, 2014 to November 15th, 2014. 

- Any writer who is also a student in high school, college, or a graduate program is eligible to submit. Any writer who is not a student is eligible so long as he/she has not completed a PhD and/or worked more than 5 years in the bioethics field with a terminal degree (e.g. JD or MD). So long as the other guidelines have been met there is no age limitation or requirement for submission. 

- Writers are not eligible if they currently or have previously worked full time for The Hastings Center or Daniel Callahan. Anyone affiliated with Bioethx Under 25 in an editing capacity is also ineligible. 

- To submit, please email bioethicsunder25@gmail.com with your essay attached in word format. In the body of the email please indicate that you are submitting for The Daniel Callahan Young Writers Prize and include your name, phone number, email address, current occupation and place of occupation (if a student, then your school, potential degree, and expected graduation year), and your highest degree attained with the school and year. 

- For any questions please email bioethicsunder25@gmail.com or comment below. 

About Daniel Callahan

Daniel Callahan is Senior Research Scholar and President Emeritus of The Hastings Center. He was its cofounder in 1969 and served as Director and President between 1969 and 1996.  Over the years his research and writing have covered a wide range of issues, from the beginning until the end of life. In recent years, he has focused his attention on ethics and health policy.

He has served as a Senior Lecturer at the Harvard Medical School and is now a Senior Scholar at Yale. He received his B.A. from Yale and a PhD in philosophy from Harvard. He has honorary degrees from the Charles University, Prague, the Czech Republic, the University of Colorado, Williams College, Oregon State University, the State University of New York and the University of Medicine and Dentistry of New Jersey.

Callahan is an elected member of the Institute of Medicine, National Academy of Sciences; a former member of the Director’s Advisory Committee, the Center for Disease Control and Prevention, and of the Advisory Council, Office of Scientific Responsibility, Department of Health and Human Services. He won the 1996 Freedom and Scientific Responsibility Award of the American Association for the Advancement of Science. He is the editor or author of 47 books. 

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.

On the Matter of Life and Death

By Michael DiBello

The Death of Ivan Ilyich by Leo Tolstoy provides a chilling and sobering tale of death. Ivan Ilyich is caught up in the everyday routine of what most would consider a patently ordinary life. His main concerns are everyday problems and affairs. He holds an unreflective stance towards death, perceiving it as a simplistic event experienced by the other, not himself. Yet, that all changes when he begins to die. He grapples deeply with the meaning of life, suffering, and death. Questioning the core of his being, he starts to doubt how well he had actually lived his life and experiences an agonizing death.¹

For me, the novel raised several important questions, including: Can we truly live well and meaningfully without thoroughly reflecting on our own mortality? What, if anything, can be done to prevent deaths like Ivan Ilych's and other so called “bad deaths”?

People can live similar lives and die similar deaths. Nonetheless, just as every individual lives in a way fundamentally his own, everyone has a unique encounter with the specter of death. We can die quickly or slowly, painfully or painlessly, in denial or with acceptance, of old age or by accident, bitter or satisfied; the list of descriptions can go on and on.  Most people, when asked, could probably come up with an ideal conception of how they would like to go. While some undoubtedly experience a serene and graceful passing, surgeon Sherwin Nuland explains in How We Die that this is rare. Sadly, a norm for the end of life has become futile life support and unfamiliar doctors and nurses.² Perhaps educating ourselves on what we can more realistically expect to happen to us in the dying process can not only minimize physical suffering but also allow us to appreciate and reflect more deeply on what we distinguish as valuable and important in being a person. Indeed, what tortured Ivan Ilyich was that it was too late for he, himself, to think about what death really meant and hence, what life really meant.

How often do we really think of death in terms of ourselves? The philosopher Martin Heidegger was concerned that conceptualizations of death separate it from the self and are inauthentically placed in the public domain. He argued this was evident through linguistic expression that reduced death to an event that happened to “one” or “they”. As he says, “dying is not an event, it is a phenomenon that should be understood existentially… by its very essence, death is in every case mine, insofar that it ‘is’ at all.”³ Heidegger asks the question: Why is the concept of “dying” only utilized in the context of imminent death? In Being and Time he introduced “being towards death” as a philosophical idea.³ This means that dying is something happening all of the time to everybody, most importantly to oneself, not just to specific people at specific times.

Popular media and culture surrounding medicine play powerful roles in attitudes about death and dying. The latest reports about miracle drugs, while in some ways encouraging, may unconsciously cultivate unrealistic expectations about sustaining life when death is inevitable. These and other technological advances can give the illusion that dying is something we can control and have a choice in, or that the process can micromanaged. It is hard to deny that choice has become an integral part of the dying process in modern medical culture. A plethora of choice can foster hope for people in many medical situations. While hope can bring deliverance, false hope can bring suffering. Nuland explains that doctors (and the patients they influence) may tend to see death as something that must be conquered at all costs, as something for science to overcome. Unfortunately, he says the process devolves into a “puzzle” that must solved, far removed from real human emotions and needs.²

Ars moriendi, or the art of dying,² perhaps is the type of paradigm shift that is needed regarding mortality. Death should not be avoided at all costs, yet it should not always be readily accepted without medical intervention. It is an ambiguous, complex phenomenon that is not conducive to pure ideologies. Just as the artist does not look to science when he paints a canvas, one need not look to science to engage in an intensely personal experience. Doctors and other healthcare workers need not be the only “experts” on dying. Perhaps, ironically, grappling with the nature of mortality and what it entails can be healthy for an individual's sense of personhood. For example, upon learning he was terminally ill, Australian philosopher Julian Young was so inspired that he wrote three books in four years. A terminal patient describes a new-found vividness: “To live in the bright light of death is to live a life in which colors and sounds and smells are all more intense, in which smiles and laughs are irresistibly infectious, in which touches and hugs are warm and tender beyond belief…”.³

Henry David Thoreau may teach a further lesson on death and dying. A great thinker, social activist, and naturalist, he was clearly full of passion for the extraordinary life he lived. However, if we are to trust his comments in midst of a terminal disease, it is clear he gave quite a bit of consideration to his own mortality: “When I was a little boy I learned that I must die, and I set that down, so, of course, I am not disappointed now. Death is as near to me as it is to you”.³ 

1. Tolstoy, Leo, and Richard Pevear. The death of Ivan Ilyich and other stories. New York: Alfred A. Knopf, 2009. Print.

2. Nuland, Sherwin B.. How we die: reflections on life's final chapter. New York: A.A. Knopf :, 1994. Print.

3. Barry, Vincent E.. Philosophical thinking about death and dying. Belmont, CA: Thomson/Wadsworth, 2007. Print.

Mike graduated from Northeastern University in January 2014 with a major in biology and a minor in ethics. He is interested in a wide range of issues in bioethics and how they are applied in today's world.  

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.