Tag: culture

Bioethics News

Striking a Balance

By Peter Young

 

In April of this year, the Berman Institute and Johns Hopkins Hospital Ethics Committee held its monthly Ethics for Lunch case presentation focusing on how to manage patients who make racist, sexist, and otherwise offensive comments. The discussion, moderated by Dr. Joseph Carrese, featured panelists who have experienced racism/sexism in the clinic, and it allowed audience to gain insight from their perspectives.

 

During the discussion, there was mention that minority patients in an in-patient setting cannot choose their own doctor based solely on race, because Hopkins’ practice is to pair the best doctor with a patient’s medical needs. I was a bit confused how minority patients not being able to choose race-based concordance in an in-patient setting fits into the larger, nation-wide conversation of minority groups wanting safe spaces. For example, some argue the race of the physician affects the quality of care, and when the provider and patient’s race align, the provider can speak better to certain beliefs, religious practices, nutritional knowledge, and cultural norms. Also, there may be even subtler, yet equally important benefits of having your provider look like you, especially in our current political climate. This includes patient-compliance as well as the potential for less polarizing power dynamics in the provider-patient relationship.

 

Scholars like Dr. Dayna Bowen Matthew, author of Just Medicine and professor at University of Colorado, might argue that if a white, middle-class person tells an intercity, minority person to take their medication, that patient may be less likely to adhere.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Refugees, Narratives, or How To Do Bad Things with Words

By Anna Gotlib

ABSTRACT. This paper addresses and critiques the anti-refugee rhetoric and policies, as well as their uncritical uptake, which developed around the candidacy of Donald Trump. My intent is to examine some of this election’s cruelest, most violent, and most racist rhetoric, reserved for Syrian (and other) refugees, and to consider some possible responses to such speech in the future. To that end, I problematize the representations and treatment of refugees within the United States from three distinct groups: European Jewish refugees of the Second World War; the Eastern Bloc refugees of the mid- and late twentieth century; and the current Syrian, largely Muslim refugees. I begin by defining the concepts of homelessness and moral luck. Second, I examine the three varying histories of refugee policies in the context of these two notions. Finally, I conclude with a combination of despair and hope: First, I offer a few observations about the role of language in the recent presidential election; second, I propose alternatives to the resulting linguistic and political violence by extending Hilde Lindemann’s notion of “holding” into sociopolitical contexts.

“How odd I can have all this inside me and to you it’s just words.”
― David Foster Wallace, The Pale King

I.  Introduction

The American election of 2016 was, in its vitriol, polarization, and outcome, unlike any in recent memory. This paper addresses and critiques the anti-refugee rhetoric and policies, as well as their uncritical uptake, which developed around the candidacy of Donald Trump. My intent is to examine and confront the fact that some of this election cycle’s cruelest, most violent, and most racist rhetoric was reserved for Syrian (and other) refugees, and to consider some possible responses to such speech in the future.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Trump is Gross: Taking Political Taste (and Distaste) Seriously

by Shelley Park 

ABSTRACT. This paper advances the somewhat unphilosophical thesis that “Trump is gross” to draw attention to the need to take matters of taste seriously in politics. I begin by exploring the slipperiness of distinctions between aesthetics, epistemology, and ethics, subsequently suggesting that we may need to pivot toward the aesthetic to understand and respond to the historical moment we inhabit. More specifically, I suggest that, in order to understand how Donald Trump was elected President of the United States and in order to stem the damage that preceded this and will ensue from it, we need to understand the power of political taste (and distaste, including disgust) as both a force of resistance and as a force of normalization.

My 5-year-old granddaughter refers to foods, clothes, and people she does not like as “supergross.” It is a verbiage that I have found myself adopting for talking about many things Trumpian, including the man himself. The gaudy, gold-plated everything in Trump Towers; his ill-fitting suits; his poorly executed fake tan and comb-over; his red baseball cap emblazoned with “Make America Great Again;” his creepy way of talking about women (including his own daughters); his racist vitriol about Blacks, Muslims and Mexicans; his blatant over-the-top narcissism; his uncontrolled tantrums; his ridiculous tweets; his outlandish claims; his awkward hand gestures and handshakes; the disquieting ease with which he is seduced by flattery; his embarrassing disregard for facts; his tortured use of language; his rudeness toward other world leaders; the obsequious manner in which other Republicans are treating the man they despised mere months ago; the servility of many Democrats in the face of a military–industrial coup.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Some Comments about Being a Philosopher of Color and the Reasons I Didn’t Write a (Real) Paper for this (Seemingly) Ideal Venue for my Work

by Sean A. Valles

ABSTRACT. This special issue conspicuously lacks work by Philosophers of Color (with the exception of this commentary). I have been given this opportunity to discuss the impediments that kept me from submitting my relevant work, offered as a small step toward recognizing the impediments faced by other Philosophers of Color. I highlight factors including direct and indirect consequences of a disproportionately White community of US philosophers, and some underrecognized risk-reward calculations that Philosophers of Color face when choosing an article project. I urge further discussion of the topic, starting with an exhortation to choose the right phenomenon and accordingly frame the right question: Why are White philosophers deliberating the “ethical and social issues arising out of the 2016 US presidential election” in a prestigious journal, while Philosophers of Color are deliberating the same issues in tense classrooms, closed offices, and on-/off-campus forums?

This is not a real article. But in this special issue on the 2016 US election and Trump it is, to my knowledge, the only contribution written by a Philosopher of Color. It is a commentary about the fact that it is the only contribution written by a Philosopher of Color.

After Editor-in-Chief Rebecca Kukla expressed consternation that the issue was full of excellent papers, but written by a roster of White philosophers, I offered to say something about why I didn’t submit any of my relevant philosophical work (on nativism, racism, health policy, Latinx health, etc.), and why it didn’t surprise me that almost none of the other well-qualified Philosophers of Color did either.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

The Specter of Authoritarianism

by Andrew J. Pierce

ABSTRACT. In this essay, I provide an analysis of the much-discussed authoritarian aspects of Donald Trump’s campaign and early administration. Drawing from both philosophical analyses of authoritarianism and recent work in social science, I focus on three elements of authoritarianism in particular: the authoritarian predispositions of Trump supporters, the scapegoating of racial minorities as a means of redirecting economic anxiety, and the administration’s strategic use of misinformation. While I offer no ultimate prediction as to whether a Trump administration will collapse into authoritarianism, I do identify key developments that would represent moves in that direction.

The unorthodox campaign and unexpected election of Donald Trump has ignited intense speculation about the possibility of an authoritarian turn in American politics. In some ways, this is not surprising. The divisive political climate in the United States is fertile soil for the demonization of political opponents. George W. Bush was regularly characterized as an authoritarian by his left opposition, as was Barack Obama by his own detractors. Yet in Trump’s case, echoes of earlier forms of authoritarianism, from his xenophobic brand of nationalism and reliance on a near mythological revisionist history, to his vilification of the press and seemingly strategic use of falsehoods, appear too numerous to ignore. In this essay, I attempt to provide a sober evaluation of the authoritarian prospects of a Trump administration. As presidential agendas inevitably differ from campaign platforms, much of this analysis will be unavoidably speculative. However, the nature of Trump’s carefully studied campaign, the early actions of his administration, and the wealth of philosophical reflections on earlier forms of authoritarianism provide ample resources to inform such speculation.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Don’t Feed the Trolls: Bold Climate Action in a New, Golden Age of Denialism

by Marcus Hedahl and Travis N. Rieder

ABSTRACT. In trying to motivate climate action, many of those concerned about altering the status quo focus on trying to convince climate deniers of the error of their ways. In the wake of the  2016 Election, one might believe that now, more than ever, it is tremendously important to convince those who deny the reality of climate science of the well-established facts. We argue, however, that the time has come to revisit this line of reasoning.  With a significant majority of voters supporting taxing or regulating greenhouse gases, those who want to spur climate action ought to focus instead on getting a critical mass of climate believers to be appropriately alarmed. Doing so, we contend, may prove more useful in creating the political will necessary to spur bold climate action than would engaging directly with climate deniers.

Less than a month after the 2016 presidential election, incoming White House Chief of Staff Reince Priebus stated that climate change denialism would be the “default position” of the Trump administration (Meyjes 2016). In March 2017, Scott Pruit, President Trump’s choice to lead the Environmental Protection Agency, expressed his belief—contrary to the estabilished scientific consensus—that carbon dioxide was not one of the primary contributors of climate change (Davenport 2107). Given this existence of climate denialism at the highest reaches of U.S. government, one might believe that, now more than ever, it is tremendously important to convince those who deny the reality of climate science of the well-established facts.[1] Surely, with truth on our side, we must trumpet the evidence, making deniers our primary target and acceptance of the truth of climate change our primary goal.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Speculation, Certainty and the Diagnostic Illusory: The Tricorder and the Deathless Man by Thierry Jutel

In the paragraphs which follow, we will be discussing the ways in which two pieces of speculative fiction, the science fiction film Star Trek IV: The Voyage Home, and the novel The Tiger’s Wife use diagnostic and prognostic certainty as part of their creative narratives. In both cases, the confidence vested in the diagnosis and its outcome is contrasted to the “diagnostic illusory” of contemporary medicine.

Even while diagnosis is medicine’s primary classification tool, it is far less circumscribed than diagnostic taxonomies suggest, as well as the power afforded those who diagnose. Even very material conditions have porous boundaries (Jutel 2013) which muddy the waters in a system that is based on tidy categories. Sarah Nettleton and her colleagues have developed the term “diagnostic illusory” to describe how medicine invests in generalisation as a way of understanding disease. In the diagnostic illusory, for the cases that resists classification, or perturb a diagnostic category, one turns to ever-more sophisticated forms of technology, with the belief that it’s just a matter of time before the explanation will become clear, and the diagnosis justified. Nettleton and her colleagues raise the idea of “illusory” to highlight the “ambiguities and nuanced complexities associated with the biomedical imperative to name and classify” (Nettleton, Kitzinger, and Kitzinger 2014).

In this short essay, we will explore how two speculative texts represent diagnosis, highlighting through their respectively futuristic and supernatural approaches the yearnings of contemporary medicine, and the society it serves, for diagnostic certainty.

 

Star Trek IV: The Voyage Home and the Tricorder

In the science fiction epic Star Trek IV: The Voyage Home (Nimoy 1986), the Starship Enterprise and its crew have come back to planet earth in 1986 to save the humpback whale from extinction and by extension, to save planet earth from destruction in the future.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Walk In or Get Out: Overcoming Distrust of Medicine to Improve Outcomes

by Jennifer Cohen                                         

“Get Out” Universal 2017    

“Get Out” Universal 2017    

“Get Out” Universal 2017    

“Frankenstein” Universal 1931

“Frankenstein” Universal 1931

“Frankenstein” Universal 1931

Popular culture has long provided an outlet for feelings of powerlessness toward medicine. 19th century novels Frankenstein and The Island of Dr. Moreau tapped into fears that medicine would cruelly pursue scientific knowledge at the expense of human life. Two recent films, The Immortal Life of Henrietta Lacks and Get Out, examine the anxieties and mistrust that African Americans, in particular, experience toward the medical community in the modern era.  

Henrietta Lacks depicts a historical breach of ethics by researchers at Johns Hopkins University, whose work obscured the identity of Ms. Lacks’ “immortal” cell line and withheld attribution both to Ms. Lacks and her family for decades. In the film, this wrong exacerbates over time as the family struggles emotionally to understand the uses of their mother’s cells and to accept their mother’s consent was never considered necessary. Indeed, the family believed that members of their community were routinely used for experimentation without their consent: they tell journalist Rebecaa Skloot that, as children, they were warned by their parents to get off the streets at night or “Hopkins people” would snatch them up.

In Get Out, a nightmarish surgical practice occurs in which a neurosurgeon and psychiatrist lure African Americans to their home for use as receptacles for white brains in a bid for white immortality. Both of these films explore the premise that African-Americans should be afraid medicine will treat them differently from white individuals.

The ugly history of abuse toward African Americans in the name of medical research was extensively documented in 2006 by the bioethicist Harriet A.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Is Hope a Virtue?

It’s perfectly understandable that hope should have featured so prominently in the coverage of the Charlie Gard case; each proposal is presented as offering fresh hope, each reversal presented as dashing hopes.  In either case, hope is something presented as desirable.  A bit more deeply, hope is one of the Theological Virtues, and so anyone who has grown up in the West, irrespective of their doctrinal commitments, will come from a culture in which there’s an overwhelming sense of hope being something good.  For some, it may even be an unalloyed good – I’ll return to that in a moment.

Indeed, it’s hard to imagine a culture in which hope is not fairly straightforwardly desirable: in which, that is, hope’s desirability is the exception rather than the rule.

Hard, but not impossible.

Here’s Hesiod, telling the story of Pandora in Works and Days (from Dorothea Wender’s translation for Penguin):

Before this time men lived upon the earth
Apart from sorrow and painful work,
Free from disease, which lets the Death-gods in.
But now the woman opened up the cask,
And scattered pains and evils among men.
Inside the cask’s hard walls remained one thing,
Hope, only, which did not fly through the door.
The lid stopped her, but all the others flew,
Thousands of troubles, wandering the earth.
The earth is full of evils, and the sea.
Diseases come to visit men by day
And, uninvited, come again at night
Bringing their pains in silence, for they were
Deprived of speech by Zeus the Wise.  And so
There is no way to flee the mind of Zeus.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Transferring Embryos with Genetic Anomalies

Jackie Leach Scully argues that respect for equality and diversity, and not just respect for the parental autonomy and the welfare of the future child, should inform policies governing the use of preimplantation genetic diagnosis.

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The Ethics Committee of the American Society for Reproductive Medicine recently published an Opinion on “Transferring embryos with genetic anomalies detected in preimplantation testing.” The Opinion aims to help providers deal with the rare but ethically difficult situation when prospective parents want to transfer embryos with a known genetic anomaly that is linked to a serious health-affecting disorder.

Preimplantation genetic diagnosis (PGD) is typically used by couples to avoid transferring a genetic anomaly to their children. Using PGD to ensure the transfer of a genetic anomaly, rather than avoid it, seems deeply counter-intuitive. Yet, there are several scenarios where this might happen. For example, this might be a reasonable option when the only transferable embryos carry the genetic anomaly, or when the embryos carry a different, but potentially just as serious, genetic variation.

The most problematic cases, however, occur when prospective parents express an actual preference for children with ‘their’ genetic condition – an anomalous condition that others perceive in negative terms. It’s an uncommon situation, but despite its rarity steps have been taken to block attempts by prospective parents to ‘choose disability’, such as the UK’s legislation on reproductive medicine. The legislation prohibits the use of an embryo (or gamete, in the case of egg and sperm donation) that has a genetic anomaly “involving a significant risk” of “a serious physical or mental disability, serious illness, or a serious medical condition” unless there are no other unaffected embryos or gametes that could be used instead.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.