Tag: knowledge

Bioethics Blogs

Hard lessons: learning from the Charlie Gard case

by Dominic Wilkinson and Julian Savulescu

 

On the 24th July 2017, the long-running, deeply tragic and emotionally fraught case of Charlie Gard reached its sad conclusion (Box 1). Following further medical assessment of the infant, Charlie’s parents and doctors finally reached agreement that continuing medical treatment was not in Charlie’s best interests. It is expected that life support will be withdrawn in the days ahead.

Over the course of multiple hearings at different levels of the court in both London and Strasbourg, the Charlie Gard case has raised a number of vexed ethical questions (Box 2). The important role of practical ethics in cases like this is to help clarify the key concepts, identify central ethical questions, separate them from questions of scientific fact and subject arguments to critical scrutiny. We have disagreed about the right course of action for Charlie Gard,1 2 but we agree on the key ethical principles as well as the role of ethical analysis and the importance of robust and informed debate. Ethics is not about personal opinion – but about argument, reasons, and rational reflection. While the lasting ramifications of the case for medical treatment decisions in children are yet to become apparent, we here outline some of the potential lessons.

1. Parents’ role in decision-making for children: We need to clarify harm

Much of the media attention to the Gard case has focussed on the rights of parents in decision-making for children, and whether the intervention of the courts in this case means that doctors frequently overrule parents in the UK.

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 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

‘A bit of a compromise’: Coming to terms with an emergency caesarean section by Terena Koster

During the midwife-hosted antenatal class Cath attended in a private hospital in Cape Town, South Africa, where she would eventually give birth, pregnant women were encouraged to name the kind of birth they wanted. They were presented with three options: “natural all the way with no medication”, “natural but open to medication”, or “elective caesarean”. The ‘choice’ women were expected to make featured as an important point of concern in their antenatal care and in their preparations for birth.

Hannah, a participant in the class, recalls a particularly striking moment when the midwife went around the room and pointed at each of the participants and asked, “Who is your gynae”. She went on to predict diverse birth outcomes, irrespective of participants’ stated intentions to birth vaginally. For Hannah this was an “eye opening” experience. A first time mother, she was now invited into a highly politicised birthing environment. Hannah had been uncertain about what kind of birth she wanted, but at 8 months pregnant she had decided on a ‘natural’ birth as opposed to a ‘caesarean’, with the caveat that in the event that an emergency caesarean section was a likely outcome, she would proactively opt for an elective caesarean.

At 39 weeks and near the end of her pregnancy, she found herself sitting opposite her obstetrician who told her there was “a real threat of the umbilical cord wrapping around [the baby’s] neck as she … drop[s] down,” adding that because the baby was “so big” there was “a high likelihood of [Hannah] tearing”. For the first time, the obstetrician instructed her to make a birthing decision: to continue trying for a vaginal birth or to opt for an elective caesarean section.

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 News

New artificial species. Could they affect biodiversity?

An article was recently published in the blog Practical Ethics, defending the use of synthetic biology and gene editing to obtain new organisms that do not exist in nature. Its author argues that if biodiversity is valuable, then it should be promoted, adding new species instead of conserving it as it is.

Contrary to the commonly assumed idea that current levels are optimal, he says that global biodiversity has been deeply affected by the acts of humans, having lost countless species. Moreover, he denies that ecosystems are fragile and finely balanced units, arguing on one side that the interactions between organisms tend to undermine their stability and, on the other, that the introduction of a new species does not have a major biological impact, statements that seem contradictory.

Artificial species and biodiversity

The aforementioned article lacks references that support these novel views on biodiversity and ecosystems, which contrasts with what has so far been understood and observed from the biological and environmental sciences. Nevertheless, even if his statements were true, this does not lead to the conclusion that it is advisable to increase the present biodiversity by producing new artificial species.

Neither does it mention whether the species produced should be non-pathogenic, or whether the researchers should take into account the type of organisms produced, their number, place of release, evolution perspectives (never completely controllable), organisms with which they would interact, etc. We do not believe it necessary to explain why it would not be appropriate to introduce organisms into the natural environment without first taking into account these and other considerations.

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

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.  It would be only in the absence of a decision surrogate that “the best interests of the patient,” as judged by the physicians or the courts, would control.  Apparently British law grants rather more primacy to third parties, other than the patient and any surrogate decision-maker.  Under the rubric I’m used to, the parent’s wishes would control.  Here, the British authorities argue, they do not.

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

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 above pre-industrial levels” (United Nations Framework Convention on Climate Change 2017, Article 2a).

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

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.

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

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 News

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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Source: Bioethics Bulletin by the Berman Institute of Bioethics.

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.