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

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. 

A Misguided Race to Solve the African American Kidney Access Problem

By Pooja Patel

“A renewed trust in inherent racial differences provides a convenient but false explanation for persistent inequities despite the end of de jure discrimination.”           - Dorothy Roberts

African Americans comprise 34% of the kidney transplant waiting list yet they are recipients of only 25% of cadaveric renal transplants and experience a wait time double that of their white counterparts (1;2).  The most popular explanation for this problem is a race-based human leukocyte antigen (HLA) differential.  HLA match is among the criteria used by the United Network for Organ Sharing to assign priority to kidney waiting list members (2).  Race-based HLA studies suggest that African American patients have distinct HLA patterns and are therefore best matched with African American donors (1).  Clinicians thereby mistakenly conclude that the issue of African American access to cadaveric kidneys is intimately tied up with their reluctance to become organ donors.

Using race-based HLA studies to explain the issue of African American access to cadaveric kidneys is problematic.  Race, a social construct, cannot be used to explain biological phenomenon like immunological difference (1).  The use of race in medicine stems from the common understanding that race accurately categorizes people who share distinct physical features.  The idea is that since physical features are genetically inherited, racial categories represent genetically distinct groups of people, thereby giving race a natural place in medicine.  In reality, however, racial boundaries are drawn along historical and sociopolitical lines.  In fact, studies have shown that the genetic difference between members of the same racial groups is comparable to the genetic difference between members of different racial groups (3). This alone disqualifies linkage between race and genetics. 

Race-based HLA studies operate under the same problematic assumptions of race-based medicine in general.  The fact that the researchers determine the race of the participants based on phenotype introduces social and cultural biases into the studies.  There is no scientific mechanism for determining whether an individual is black, white, or a member of any other racial group.  Therefore, clinicians rely only on socially prescribed ideas of what it means to be a member of a particular race phenotypically (1).  For example, conventionally, individuals who are identified as black typically have darker skin than individuals who are identified as white.  A clinician conducting a race-based HLA study must rely on this loose distinction alone when categorizing individuals in a study.  A lack of stringent criteria for differentiating between racial groups invites great potential for error. Further, the use of researchers’ beliefs to assign patient categories is a far cry from the principles of evidence-based medicine in which the scientific community takes immense pride. 

The results of these flawed studies incorrectly demonstrate that the HLA patterns found on the kidneys of white and black patients are significantly different (4).  This implies that a kidney coming from a white donor is unlikely to be a match for a black patient in need of a renal transplant.  Reliance on these studies provides a false but convenient explanation for the high wait times experienced by African American patients on transplant wait lists: because most donors in the registry are white, black ESRD patients are at a disadvantage in terms of organ access because there are not enough donors that are a good immunological match for them (1).    The solution that follows from this logic, then, is to put time and energy into convincing African Americans, who typically have a low organ donation rate, to become organ donors (5). 

However, the fact that African Americans are less likely to donate their organs has little to do with the kidney access problem in the community, demonstrated by long wait times.  This solution will not adequately address the kidney access problem, which likely has roots in social issues. It potentially exacerbates mistrust in the healthcare system based on a history of misinformation, which makes African Americans reluctant to donate in the first place.  It is an attempt to solve a problem deeply rooted in social issues without engaging social problems and relies instead on flawed data to effectively mislead African Americans into serving the needs of organ procurement agencies in the name of directly improving problems in their own communities.  This solution is problematic not because more African American organ donors would be a bad thing, but because it is being touted as a solution for a problem that it may not fix. 

Using race-based HLA studies as evidence for the assertion that increased African American organ donation rates will shorten wait times for African Americans will slow the process of achieving transplant equity.  The appeal to race-based HLA differences also places the burden on African American communities, instead of a potentially unjust healthcare system, for solving the problem of equity in transplant access.  Because race-based HLA studies are flawed, they cannot be used to explain the delays that African Americans experience in receiving cadaveric kidneys once on the wait list.  Thus, it is not certain that increased African American donors will decrease wait list times for African Americans, and it will take time before African American donor levels increase to appreciable levels that demonstrate whether they help with wait times or not.   

Organ procurement agencies use what is essentially propaganda to encourage minority organ donation, asserting that “all individuals waiting for an organ transplant will have a better chance of receiving one if there are large numbers of donors from their racial/ethnic background (6).” It is unfair and ineffective to attempt to change the attitudes of a community that has strong reservations about donating due to a historical mistrust in the healthcare system by ignoring this mistrust and using convenient but misinformed explanations instead.   Today, about thirty-eight percent of African Americans refuse to donate their organs (7).  The most alarming reason for this lack of enthusiasm that regularly appears in the literature is a mistrust of the medical community. 

The results of HLA studies are being used to make it seem as though increasing African American organ donation rates is the key to solving the kidney access problem.  However, like the reluctance of African Americans to become organ donors, the kidney access problem likely has deep social roots and is more complex than a simple case of supply and demand.  Although their intentions may be noble, organ procurement agencies are exploiting African American communities by using the results of race-based HLA studies in this way.  Efforts should be made, instead, to use well designed studies that investigate and address the social issues at the heart of both the kidney access problem and reluctance to donate in the African American community.  

Pooja is a recent graduate of Northwestern University, where she received a B.A. in English Literature.  Her research interests include the causes of health disparities among ethnic and racial groups and health issues pertaining to medically underserved populations. 

References

1. Gordon, EJ. (2002). What “race” cannot tell us about access to kidney transplantation. Cambridge Quarterly of Healthcare Ethics, 11.02, 134-41. 

2. Organ Procurement and Transplantation Network. (2014). OPTN Policies. Retrieved from http://optn.transplant.hrsa.gov/ContentDocuments/OPTN_Policies.pdf#nameddest=Policy_08.

3. Krieger, N., Basset, M. (1986). The health of black folk: disease, class, ideology, in science. Monthly Review, 38.3, 74-85.

4. Mori, M., Beatty, PG., Graves, M., Boucher, KM., Milford, EL. (1997). Hla gene and haplotype frequencies in the North American population: the national marrow donor program donor registry. Transplantation, 64.7, 1017-027.

5. Kasiske, BL., Neylan, JF., Riggio, RR., Danovitch, GM., Kahana, L., et al. (1991). The effect of race on access and outcome in transplantation. New England Journal of Medicine, 324.5, 302-07.

6. U.S Department of Health and Human Services. (2014). Why Minority Donors are Needed. Retrieved from http://www.organdonor.gov/whydonate/minorities.html

7. Minniefield, WJ., Yang, J., Muti, P. (2001). Differences in attitudes toward organ donation among African Americans and whites in the United Sates. Journal of the National Medical Association. 93.10. 372-79. 

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 Home in Nursing Homes

By: Rebecca Kaebnick

The sitting room, living area, and community space of the skilled nursing facility in my grandparents’ staged living community was often the hallway. There was a harshly-lit room with tables and a TV around the corner, and a cafeteria-like dining room down the hall. However, the aides tended to gather residents in the hallway, lined up in their wheelchairs in front of the nurses’ and aides’ station. The forbidding front of this station, a pedestal for charts and computers, was an impossible height for many of the wheelchair or walker-bound residents. Strung along this main hall and around some corners were the residents’ spaces, not quite oriented to watch the activity outside the windows, but not quite arranged to focus inward, on each other, either.

On paper, this wing had it all: compliance to health codes, caring nurses and aides, physical therapy. In fact, the facility was top-of-the line. But there was also an unsettled feeling that upset any possibility for a homey feel. Time moved bizarrely: residents sat silently in their rooms or in their wheelchairs in the hallway while the aides swept around and shifts turned over; the clock by the aides’ desk seemed to be counting down to many things and to nothing. When my family visited, we perched in odd places around my grandmother’s room, or gathered near the doorway. When we passed residents, we did not feel as if we were supposed to smile and greet them; one does not greet patients she passes in a hospital, and that’s what it felt like. This was a place where people were on their way to somewhere else; like a hospital, nurses and visitors and patients moved in and out, but these spaces were not a home.

Why are such facilities like this? If they were designed differently, could they feel different? While many of the residents living in this area need careful medical attention, this phase of life is not just about medical and physical care, and doesn’t always have to feel like a hospital.

There are some successful efforts to break the mold, mainly sprung from the culture change movement in the nineties to “deinstitutionalize” nursing homes. The Green House project, developed in the early 2000s, is a key example of an accessible and efficient elder care home that still manages to create a more hospitable environment. Green Homes look more like houses than institutions. They are set up like family residences too, with a living room containing a hearth, a dining table seating all 7-10 of the residents, and the appearance of few medical instruments and technology. Green Homes redesign personal and communal space to make residents feel they are living in a home, rather than a glorified hospital, and give nursing assistants the role of “universal workers” who do everything from dispensing medications to cooking dinner. They have more interaction with residents than do aides in traditional nursing homes, and reportedly increased job satisfaction. The new physical characteristics of the homes and different roles of the aides reconfigure interactions between residents and staff, between residents, and even between residents and their family, during visits.

Another inspiring nursing home is Beatitudes Campus in Phoenix, Arizona. In a New Yorker article published last May, “The Sense of an Ending,” Rebecca Mead describes efforts made to replicate the comfortable, residential feel like that of the Green Homes in a more traditional facility. Tena Alonzo, the Beatitudes director of education and research, adjusts details of a resident’s lifestyle in unconventional ways that can make the resident much more comfortable. For example, a resident’s bed is lowered when there is a higher risk of falling out during the night. The “neighborhood,” as the staff call the facility, is not run on strict schedules; individuals create their own timetables based on what works for them. Food is available around the clock. The layout of the space and interactions between residents and staff are influenced by the characteristics of dementia, not by what is the cheapest or easiest. Instead of a heavy metal door at the entrance of the facility, residents are more subtly reminded not to wander by a velvet rope, like that of a classy restaurant, and a large black carpet, which dementia patients don’t like to walk on because they might interpret it as a hole. Alonzo develops strategies like these to make residents comfortable in more respectful and logical ways than those of traditional nursing homes. She also wishes for the staff to be more understanding of the lifestyle and needs of their residents; she encourages the staff members to try acting as residents for a day, in situations that can be embarrassing or uncomfortable, such as wearing a diaper.  This is another take on the Green House “universal worker” idea, to create more equal and warm relationships between residents and their caretakers. Mead mentions several other establishments that apply concepts similar to Alonzo’s. Like Beatitudes, the Pioneer Network in Chicago attempts to satisfy residents without the heavy use of psychotropic medications. The Isabella Geriatric Center and the Cobble Hill Health Center, both in New York City, are working to integrate Alonzo’s ideas into their practices.

In a study  published in The American Geriatrics Society Rosalie A. Kane et al. assess the success of Green Houses, finding that “GH residents reported significantly higher satisfaction with the nursing home as a place to live than residents of the [comparison facilities].” These feelings of comfort and happiness go hand-in-hand with particular trends in emotional and physical health, such as depression and the loss of independence in a set of activities called Activities of Daily Living, which include eating and using the bathroom. Alonzo and her co-director, Long, found strong trends in weight-maintenance and even healthy weight gain among their residents, due to their adaptive, flexible eating and daily schedules. Pam Belluck, in her New York Times article “Giving Alzheimer’s Patients Their Way, Even Chocolate,” cites various studies showing that space, activities, and medication can be adapted to make a dementia patient more comfortable. Making the lights brighter can have a big effect. Prescribing medication specifically for pain instead of an antipsychotic for dementia can keep side effects under control. Alonzo’s tendency to allow residents comforting rituals, such as sucking on chocolate and playing with dolls, has scientific basis: habitual pleasurable activities have been proven to correlate to depression and decreased cognitive activity. Belluck mentions a University of Iowa study that found that although many dementia patients no longer have the strongest memories, a happy mood can persist hours after the activity ends.  Living in an environment that makes them happier has significant effects on many dimensions of the residents’ health, interpersonal relations, and can help them see themselves as people fit to live in a real home, even if it requires some new accommodations.

If my grandparents’ experience is typical, then it is difficult for the average elder care consumer to ascertain just how homelike the nursing facility is when looking at retirement communities.  Many attempt to channel cheerfulness and hospitality into their built environments by adding special features to their more independent-living wings— fire-lit libraries, easy-access greenhouses, and welcoming dining rooms. Yet it is just as important for the visitor to learn about the functional wings. Maybe consumers do not expect areas designated for increased medical attention to have the same atmosphere, or maybe these areas are just not fully presented to them. Do companies tend to push some aspects of the independent living options and downplay some of the dependent ones? When potential customers visit, they may be more focused on the near future, when they will be living in the apartments and visiting the dining rooms. It is hard to fully picture a time when one’s health may have changed enough to need around-the-clock care, but many will arrive at that point.

Welcoming and peaceful environments seem even more important in the wings where residents deal with more advanced conditions and illnesses. Many residents, like my grandmother, juggle health-related anxieties with the pressure of moving somewhere entirely unfamiliar. Much of the stress my grandmother experienced seemed to be derived from a feeling of displacement. She was always someone who took great pains to make her living space feel like hers, and in this wing she lost this capability. Green Houses and Beatitudes illustrate that it is possible to unite medical care to homeliness, even though a straightforward set-up following the lines of a hospital wing might seem more efficient. Green Houses are certifiedskilled nursing facilities, run by a dependable team of certified nursing assistants, and a “clinical support team” made up of professionals who supervise the medical experience of the residents. Half of the residents in the studied Green House were certified dementia patients, and InformeDesign, a research tool for design professionals, asserts in a short piece about Green Homes that this model could be applied to “even the most heavy-care facility.” Quality of care is not compromised in this environment; reports on the quality of care by the Green House residents overall were either at the same level or better at the Green Houses than at the comparison nursing facilities. At Beatitudes, the directors found that patients were happier months after their arrival, and sometimes were able to make health gains: one resident was able to stop taking insulin because she began eating so well. Beatitudes won an award from the American Association of Homes and Services for the Aging. These models have found ways to successfully integrate medical technology and accessibility into a warm environment.

The basic premise of the Green House project is to find a way to make living areas cohesive units in which the medical structure isn’t the dominant aesthetic factor, detracting from the quality of life of the residents. While it is unclear how affordable Green Houses are, and it is true that the movement is not big enough to be an option for everybody, the success of Beatitudes proves that the goals of the project can be successfully applied to traditional models that still make up the most common elder care options. Beatitudes’s innovations go farther than the built environment, to making the schedules and activities of the patients, and the responses of the staff to residents’ distress, more adaptive to the individual patients themselves. Learning this makes me optimistic and hopeful that this trend will grow. Thinking back to my grandparents’ situation, I can see that my grandmother would have been well suited to be cared for by a collection of staff who are not afraid to make unconventional changes to make a resident more comfortable. Green Homes and homes like Beatitudes take the time to organize themselves according to what they see helps their patients, not according to tradition. They create environments in which conversation between residents, and between residents and staff, is encouraged. Visitors can join the residents in these spaces, bringing in pieces of the outside world but at the same time integrating themselves into this life, at least for a day. The residents can feel like they belong there; they aren’t stored in their rooms or lined neatly in the hall. Instead they can congregate around a puzzle, meet with a friend, pick out a book for themselves. They don’t just stay here until the end—they live here, enjoying each moment with vigor.

Rebecca is a junior at Ithaca College where she is majoring in Sociology and minoring in Spanish, art, and honors. She is interested in issues relating to globalization and vulnerable populations.

Inflicting Harm to Prevent Harm: Creating Policy for Vulnerable Populations Seeking Asylum in Australia

By Amy Louise Constable 

Australian asylum seeker policy is currently riddled with a series of ethical conundrums. Being party to the 1951 United Nations Convention and Protocol Relating to the Status of Refugees, Australia is obligated to accept those claiming asylum from persecution, violence or fear either who enter into Australian territory and respect the principle of non-refoulment and not send refugees to an environment from which they are fleeing. Detention of asylum seekers has been a bipartisan policy in Australia since 1992 when Australian Prime Minister Paul Keating introduced off-shore detention, with bipartisan support. The zealous implementation of increasingly cruel offshore detention policies has been described as a ‘race to the bottom’.

The 2013 Australian federal government was characterized by the promise of increasingly ‘tough’ and cruel policies seeking to deter asylum seekers entering Australia by boat and protect Australian sovereignty by both major parties. The conservative Government initiated Operation Sovereign Borders, an extension of existing asylum seeker policy. Operation Sovereign Borders is an extension of pre-existing off-shore processing policy which instructs that all asylum seekers arriving by boat, ‘illegal maritime arrivals’, are to be processed off-shore at Manus Island, a northern territory of Papua New Guinea (PNG), and at Nauru with “no chance of being settled in Australia as refugees”. This policy has been justified by both major Australia political parties as preventing further deaths at sea. Between 2008-2013 approximately 1200 people died at sea trying to come to Australia by boat. This begs the question, what is the ethically acceptable cost of preventing death at sea?

The ‘tough’ new stance on asylum seekers has recently inflamed debate surrounding exactly what the ethical, medical and legal responsibility of the Australian Government to the asylum seekers on Australian territory and on international territory in Australian Government funded detention centers is. The logic for this policy is justified by the Department of Immigration and Border Protection as stopping deaths at sea and protecting national security. Consequently, this policy sees the compulsory detention of thousands of adults, minors and children, of whom 91% are declared to be refugees, with higher protection visa rates for specific ethnic groups (i.e., the Afghani’s receiving a protection visa being approximately 99.7%)

Operation Sovereign Borders dictates that all asylum seekers be transferred from Australian sovereign territory within 48 hours, as instructed by Minister for Immigration and Border Protection, Scott Morrison. This rapid process involves all medicines, prostheses, and medical equipment being confiscated, and often not returned, and does not provide sufficient time for a comprehensive diagnosis of potential diseases. Consequently the process has seen several healthcare horrors:

--Potential exposure of asylum seekers to tuberculosis following a non-diagnosis while being processed on Christmas Island (remote north-western Australian territory).

--A 23 year old Iranian-Kurdish man dragged from a computer room and beaten to death by a G4S security employee.

--Detainees attacked with machetes and throats slashed during attacks by locally-hired security guards.

--A Rohingyan asylum seeker who was identified as having a ‘very high risk’ pregnancy was transferred to Nauru for the purpose of ‘setting an example’.

--a woman being told she should not ‘expect a lot’ of healthcare after miscarrying.

--An Iranian man lapsing into severe epilepsy following a refusal of access to confiscated epilepsy medication.

A 92 page letter from fifteen doctors working at the Christmas Island and Manus Island detention center has highlighted the inadequate resourcing of centers and the degradation of those seeking treatment. They have stated that they are being paid to compromise medical ethics and have explicitly stated that doctors are expected to participate in ‘unethical conduct and in gross departures from clinical standards’.

Issues of reciprocity have further confounded exactly what Australia’s obligations are to people fleeing their home countries. A particularly stark example of this is the employment of Afghan Hazāra, a persecuted ethnic minority in Afghanistan, as interpreters by the Australian Defense Forces during the NATO led military invasion in Afghanistan, many of whom have applied for asylum in Australia. Reports have surfaced that Afghani-Hazāra interpreters who have had their asylum application rejected have been killed by the Pashtun led Taliban due to their ethnic and religious difference to the Taliban and their assistance to the allied NATO forces. While this itself is an issue largely outside the scope of this short essay (what responsibility do we have to those who have offered us assistance?), it highlights the incredible complexity of ethical, moral and legal issues associated with formulating policy that may harm incredibly vulnerable or precarious populations.

These few specific issues among a sea of thousands of complaints and detailed reports by security contractors Serco of self-harm, sexual assault, hunger strikes and the transferal of unaccompanied minors to detention centers for indefinite prolonged periods. Transferal of minors into detention has been criticized for exposing children to distressing situations, children referring to themselves by their client number as opposed to their name (see 46.18-59.12 of attached video) report, confronting developmental delays due to lack of access to education and exposure to environments riddled with self-harm, sexual and physical assault. The ‘tough stance’ taken by the Government highlights the ethical fallacy of invoking a policy causing medical and psychological harm in the name of trying to deter people from taking a dangerous journey.

The ethical mess of Australian detention center medical administration is highlighted by a co-author of the 92 page letter to the Guardian and Minister Morrison says; “there will one day be a royal commission [the highest level of government-sanctioned inquiry in Australia] into what is taking place on Christmas Island. He suggested we document well.” Creation of policy for vulnerable populations is fraught with ethical difficulty and complexity, and is further confounded when the democratic processes, such as the 2013 Australian federal elections, indicate a seeming majority of the population support increased cruelty to vulnerable persons. Perhaps the easiest way to condense this ethically compromised ‘humanitarian’ policy is to ask: what is the cost of this policy? Is it justifiable to inflict harm onto those individuals in the aim of preventing harm to others?

Amy Constable is an Honours degree candidate at the Australian National University, and was a 2013 summer fellow of the Yale University Interdisciplinary Center for Bioethics.

Organ Donations: It is Time to “Opt-Out” of Our Current Policy

By: Michael DiBello

In bioethics today, there is a wide array of fiercely contested topics such as abortion, euthanasia and novel fertility treatments, which have made the front pages of newspapers around the globe. While these undoubtedly important issues demand a thorough dialogue, some equally important policy issues seem to slip under the radar. 

One of these issues is our policy for organ transplantation.

On average, approximately 18 U.S. residents die per day awaiting a transplant, totaling over 6,500 per year. Only about 45% of the adult U.S. population are registered as donors. Many lives could be saved and significantly enhanced if more people were registered as organ donors. The question becomes: how do we increase the donor pool in a fair, ethically responsible manner?

In the United States, individuals must opt-in to become a donor by checking a box on a driver’s license application or by signing up online. This “opt-in” system of organ donation is inadequate not only from an efficiency perspective, but from a moral perspective as well. Many countries have adopted an alternative system to the opt-in policy, where the default position for adults is set to being a donor, with an option to opt-out. This system is generally referred to as an opt-out policy. Countries with an opt-out style policy like France, Austria, Poland, Hungary and Portugal display donor consent rates of over 99%. Countries with an opt-in style policy like the United Kingdom, Germany, Netherlands and Denmark display rates drastically lower donor consent rates under 30%. 

Why is it exactly that people do not give consent to become an organ donor? One possible reason may be the immediate and intimidating nature of the decision for an individual. Organ transplantation may evoke images of dismemberment, drastic surgery and death, instilling apprehension and anxiety in the individual, resulting in a decision to not actively volunteer to become a donor. While the emotional responses regarding organ transplantation are understandable, they do not make the decision to decline becoming an organ donor morally correct. 

It intuitively seems fair that if one is willing to receive a transplant (I assume the vast majority of people are), then one should also be willing to donate their own organs, especially in the situation of scarcity involved in organ availability. This is exactly why it is the state’s responsibility to provide the guidance of an opt-out system. Part of the reason for the existence of the state is to encourage individual decisions which are beneficial to the overall public, especially when those decisions involve little to no significant sacrifice for the individual. The opt-out system donor pool would include all donors that currently actively choose to be donors under the opt-in system, those who would become donors with a little more consideration and/or state guidance and also those who are simply indifferent to what happens to their organs. This could likely mean a very significant increase in the donor pool with no coercion, injustice or unfairness done. 

 

What if an individual really does have strong feeling against being a donor? In the opt-out system one can imagine, they are entirely free opt-out without consequence. A possible mechanism for the action of opting out could involve checking a box on an application for a government ID. A whole separate debate may be necessary for the issue of automatically registering children as donors, as they may not possess a sufficient degree of autonomy to make a fully informed decision about organ donation. Should the default donor position apply to children, with the decision to opt-out left up to the parents? Should the default donor position simply not apply to children at all? These are difficult but important questions, especially considering the clear physical constraints of other children in need of organs.

One possible objection to the opt-out policy is that is a coercive state policy, since it defaults to an individual giving up something they may consider valuable (the right to an intact body after death). As mentioned previously, the opt-out policy still affords the individual this right. All that is required is simply more conscious consideration about exactly what they are doing.

Adding quality years to as many lives as possible is more important than the temporary preservation of the physical integrity of a corpse. This is the attitude necessary in order to be on track to a policy change. Our current organ donation system is failing, and an opt-out policy would bring about greater fairness in a society where increased access to healthcare is a goal that should be pursued to the highest possible degree. 

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.