Tag: knowledge

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More about Charlie Gard

Dr. Robert Truog, the bioethicist and transplant physician who has pushed the envelope on the definition of death, has weighed in on the Charlie Gard case in a “Perspectives” piece that is generally available (i.e., without a subscription) from the Journal of the American Medical Association (JAMA).   By all means read it.

Dr. Truog approaches the case from the standpoint of limiting medical research—indeed, that’s in the title of his article.  He says the case is about “the best interest of the patient, financial interest, and scientific validity.”  On the first point, he is cautious about the British courts’ assertions that it can assess how much pain and suffering Charlie is experiencing, and whether the courts know this better than the baby’s patients.  This caution seems wise.  As I have reflected further on this case it strikes me that I may be missing a legal distinction between Britain and the US; frankly, I am not well-versed on British law in these cases.  I do tend to think of the Gard case in terms of substituted decision-making in the case of severe or terminal illness.  My thought process runs through the checkpoints.  First, the patient’s wishes are paramount.  In this case, the patient cannot express wishes and may not be able to form them.  In that case, second, a surrogate decision-maker should speak for the patient using “substituted judgment” or “substituted perspective” to express how the patient might have approached the case if able to express wishes.  Here, the parents are available to speak for the patient. 

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.

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Climate Policy in the Age of Trump

by Mathias Frisch

ABSTRACT. The Trump administration is in the process of undoing what were the two central planks of President Obama’s climate policy: First, Trump has called for a review of how the social cost of carbon is calculated in used in analyses of regulatory rule making and, second, Trump has announced that the United States is withdrawing from the Paris Agreement. In this paper I examine some of the conservative critics’ objections to the first plank: calculations of the social cost of carbon in climate cost benefit analyses. I argue that while some of these criticisms are justified, the criticisms end up strengthening arguments for the importance of the second plank: the urgent need for an ambitious climate policy, in accord with the Paris Agreement, as precaution against exposing others to the risk of catastrophic harms.

1. INTRODUCTION

As the record-breaking heat of 2016 continues into 2017, making it likely that 2017 will be the second hottest year on record just behind the El Niño year 2016, and as Arctic heat waves pushing the sea ice extent to record lows are mirrored by large scale sheets of meltwater and even rain in Antarctica—the Trump administration is taking dramatic steps to undo the Obama administration’s climate legacy.

In its final years, the Obama administration pursued two principal strategies toward climate policy. First, by signing the Paris Accord it committed the U.S. to contribute to global efforts to hold “the increase in the global average temperature to well below 2°C above pre-industrial levels and to pursue efforts to limit the temperature increase to 1.5°C

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.

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Fake News and Partisan Epistemology

by Regina Rini

ABSTRACT. This paper does four things: (1) It provides an analysis of the concept ‘fake news.’ (2) It identifies distinctive epistemic features of social media testimony. (3) It argues that partisanship-in-testimony-reception is not always epistemically vicious; in fact some forms of partisanship are consistent with individual epistemic virtue. (4) It argues that a solution to the problem of fake news will require changes to institutions, such as social media platforms, not just to individual epistemic practices.

Did you know that Hillary Clinton sold weapons to ISIS? Or that Mike Pence called Michelle Obama “the most vulgar First Lady we’ve ever had”? No, you didn’t know these things. You couldn’t know them, because these claims are false.[1] But many American voters believed them.

One of the most distinctive features of the 2016 campaign was the rise of “fake news,” factually false claims circulated on social media, usually via channels of partisan camaraderie. Media analysts and social scientists are still debating what role fake news played in Trump’s victory.[2] But whether or not it drove the outcome, fake news certainly affected the choices of some individual voters.

Why were people willing to believe easily dis-confirmable, often ridiculous, stories? In this paper I will suggest the following answer: people believe fake news because they acquire it through social media sharing, which is a peculiar sort of testimony. Social media sharing has features that reduce audience willingness to think critically or check facts. This effect is amplified when the testifier and audience share a partisan orientation.

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.

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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.

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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.

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Excluding Pregnant Women From Clinical Studies Because They’re Classed As ‘Vulnerable’ Is ‘Harmful’

July 20, 2017

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Excluding mums-to-be from clinical studies is unfair and could be potentially harmful, researchers have said.

Pregnant women are often ruled out of participating in clinical trials because they’re classified as a “vulnerable” group, and this creates a knowledge void around the impact of drugs taken during pregnancy and “unfairly excludes” them from taking part in clinical studies, concluded researchers writing in the ‘Journal of Medical Ethics’.

“There is a desperate need to shift the paradigm to protect pregnant women through research, not just from research,” the researchers wrote.

… Read More

See Also – Commentary: Pregnant women should not be categorised as a ‘vulnerable population’ in biomedical research studies: ending a vicious cycle of ‘vulnerability’

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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.

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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.

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Exclusion of Mothers-To-Be From Clinical Studies Unfair and Potentially Harmful

July 18, 2017

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In fact, pregnant women’s vulnerability boils down to the lack of research carried out in this group, and it’s a dilemma that can only be overcome by including mums-to-be in clinical studies, they say.

“Our study once and for all demonstrates that there is no indication that pregnant women are vulnerable because of informed consent, susceptibility to coercion, or vulnerability of the fetus,” they write.

“The only reason why pregnant women are potentially vulnerable in clinical research is to the extent that they are increasingly exposed to higher risks due to a lack of scientific knowledge which might render them vulnerable as research subjects,” they continue.

“Only a joint effort to promote fair inclusion by funding agencies, authorities, researchers, methodologists, pharmacologists, guideline committees and [research ethics committees] can successfully reduce pregnant women’s vulnerability,” they conclude.

In a linked Commentary, Drs Carleigh Krubiner and Ruth Faden, of the Berman Institute for Bioethics at Johns Hopkins University, Baltimore, argue that the designation of pregnant women as ‘vulnerable’ “is inappropriate and disrespectful.”

And rather than protecting them, it has had the opposite effect, and created a great deal of uncertainty and anxiety.

… Read More

Vulnerability of pregnant women in clinical research, Journal of Medical Ethics (2017). DOI: 10.1136/medethics-2016-103955

Commentary: Pregnant women should not be categorised as a ‘vulnerable population’ in biomedical research studies: ending a vicious cycle of ‘vulnerability’ Journal of Medical Ethics (2017). DOI: 10.1136/medethics-2017-104446

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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.

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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.

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June 2017 Newsletter

Global Bioethics Initiative (GBI) is dedicated to fostering public awareness and understanding of bioethical issues, and to exploring solutions to bioethical challenges.
Through its events and activities, which include annual summer schools on global bioethics, GBI seeks to keep the international community, policy decision-makers, the media, and the general public aware of important bioethical issues which is essential for making informed decisions and fostering public debate. Using various platforms, we at GBI are able to promote our motto “Doing bioethics in real life!”.
GBI is an active member of the United Nations Academic Impact (UNAI) and enjoys a special consultative status with the United Nations Economic and Social Council, the UN’s central platform for debate, reflection, and innovative thinking on sustainable development. Check out our website here.
Global Bioethics Initiative (GBI) launches
its third edition Summer School Program

NYC (June 19-30), 2017New York, New York June 19, 2017: GBI starts its summer school program sponsored by Pace University, College of Health Professions and New York
Medical College. Lead by experts in the field of Bioethics, students and professionals will witness Bioethics in various forms such as film screenings, field trips, and lectures/seminars, ending with a completion ceremony. Topics addressed in the program are: embryonic stem cell research, cloning, gene therapy, end-of-life care, genetics, reproductive technologies, human subject research, organ transplantation and access to health care.

“I am absolutely confident you leave this program enriched, “said Dr. Bruce Gelb, President of GBI. You will find that what you learn over the coming days, will impact how you interact and engage with the world in many aspects of life.”

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.