Tag: children

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 It is expected that life support will be withdrawn in the days ahead.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 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 Blogs

When a doctor calls a patient a racial slur, who is hurt?

by Keisha Ray, Ph.D.

Last week Lexi Carter, a black woman from Tennessee had an experience that so many other black people have had, a racially charged visit with a doctor. When Carter walked into her doctor’s office, Dr. James Turner greeted her with “Hi Aunt Jemima.” During the visit, he proceeded to call her Aunt Jemima more than once. Carter’s encounter with Dr. Turner is problematic for many reasons: 1. The term “Aunt Jemima,” which is the name of a popular syrup and pancake mix whose packaging depicts the face of a black woman, has a long history of racism dating back to the late 1800s; 2. Dr. Turner made these remarks in front a physician assistant trainee and a student who are still learning about the field of medicine; 3. After admitting to making the remark, Dr. Turner said that the term “was not intended to show disrespect for Ms. Carter,” calling it a “misspoken blunder.”

Aunt Jemima is a reflection of the “mammy” archetype that can be found in films, television shows, and literature (e.g. Calpurnia in “To Kill a Mocking bird” or Mammie in “Gone with the Wind”). The archetype depicts a larger black woman who is usually wearing an apron over a tattered dress, her hair is usually tied up with a scarf of some sort (typical of black slaves who tied their hair up to help protect from lice). The mammie character is also typically responsible for caring for the homes and children of white slave owners (i.e. house slaves), and who speaks using vernacular typical of uneducated black slaves, a vernacular that is usually mocked for being simple and unrefined unlike that of the vernacular of white people.

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

Companies Rush to Develop ‘Utterly Transformative’ Gene Therapies

July 24, 2017

Be the first to like.
Share

Companies and universities are racing to develop these new therapies, which re-engineer and turbocharge millions of a patient’s own immune cells, turning them into cancer killers that researchers call a “living drug.” One of the big goals now is to get them to work for many other cancers, including those of the breast, prostate, ovary, lung and pancreas.

“This has been utterly transformative in blood cancers,” said Dr. Stephan Grupp, director of the cancer immunotherapy program at the Children’s Hospital of Philadelphia, a professor of pediatrics at the University of Pennsylvania and a leader of major studies. “If it can start to work in solid tumors, it will be utterly transformative for the whole field.”

But it will take time to find that out, he said, at least five years.

… Read More

Image: By NIAID/NIH – NIAID Flickr’s photostream, Public Domain, https://commons.wikimedia.org/w/index.php?curid=18233598

Be the first to like.
Share

NYTimes

Tags: , , , , , , , , ,

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.

Bioethics Blogs

Press Release – “Vale Charlie” Prof Julian Savulescu

Vale Charlie

At some point in all of our lives, we have to let go. One can only admire Connie Yates and Chris Gard who fought so hard for Charlie.

 

However, we should continue to question the original decision, and the way in which these decisions are made. Even if it is too late for Charlie now, we should improve how we make these decisions for the future.

Back in January, there was an option for a trial of treatment that had some chance of success, a world leading doctor willing and able to provide it, and, by April, the funds had been raised to achieve it without public funds. There were also the means to control and minimise Charlie’s suffering. I believe that a limited trial of treatment was in Charlie’s interests back then, given the only alternative for him was death.

 

Doctors opposed this because of the low chance of success combined with fears that the extra time in life support would be too painful.

 

4 months of the legal process has left us with no trial of treatment, and no chance now for Charlie. Yet Charlie had to go through all the suffering (and more) of being kept alive on life support.

 

No-one wanted this outcome. No-one believes this outcome was in Charlie’s best interests. There has got to be a better process. It has been traumatic for all the doctors, who have genuinely had Charlie’s interests at heart, and Connie and Chris, but most of all Charlie.

It has also raised other issues.

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

Recent findings. Children conceived through assisted reproduction, now adolescents, have more medical problems

These recent findings should be taken into consideration when making an ethical assessment of assisted reproduction.

An issue that often arises is whether children conceived through assisted reproductive technique – ART (see HERE) present more medical and/or mental health problems when they reach adolescence than those conceived naturally. A recent study (see Abstract) that evaluated the development of 253 adolescents conceived using assisted reproductive techniques compared to a similar group of adolescents conceived naturally found that “no differences were detected in general and mental health of ART adolescents or cognitive ability, compared with the reference group.” However, “follow-up […] revealed that male ART adolescents had significantly more doctor’s appointments compared with the reference group.” Nonetheless, the authors point out that further studies with larger cohorts are needed to confirm these results.

Findings detect a higher risk of cardiovascular disease and higher blood pressure

In a second study, also published in Fertility and Sterility, more metabolic and cardiovascular disorders were detected in children conceived by ART. This systematic review and meta-analysis examined 19 studies that included 2,112 ART-conceived and 4,096 naturally-conceived children, who were followed to adulthood. It found that the blood pressure of those conceived by ART was statistically higher than those conceived naturally. Furthermore, the cardiac diastolic function was suboptimal and blood vessel thickness was higher.

Conclusion

The authors conclude that their findings suggest a higher risk of cardiovascular disease in children conceived by ART, which calls for further research to be able to corroborate these data.

There is no doubt that these findings should be taken into consideration when making an ethical assessment of assisted reproduction.

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

Cholera Is Slaughtering Yemen and We’re Letting It Happen

July 21, 2017

Be the first to like.
Share

But the Haitian debacle, in which United Nations Peacekeepers carried the Vibrio cholerae in their bodies from Nepal, passing the bacteria into local streams to spawn a massive epidemic that continues today, spread in a nation shattered by natural disaster. There is nothing “natural” about the carnage of Yemen: This is war, waged from 10,000 feet by Saudi bombers that have damaged or destroyed every hospital, clinic, water treatment plant, pumping station, and sewer system from Sanaa to Ibb.

According to the World Health Organization (WHO), 14.5 million Yemenis no longer have access to clean water: Cholera is a water-borne disease. UN officials reckon 17 million Yemenis are “one step away from famine,” civil war rages across the land, the region is locked in a climate change-compounded record drought, and the country’s Arab neighbors feed the flames with steady flows of arms and carpet-bombing campaigns.

Every day the WHO issues a new, always grimmer data set, estimating the toll cholera is taking. Inside the country, humanitarian groups and Yemeni medical personnel stack ailing men, women, and children three and four to a bed, hooking each one up to life-sparing hydration IV drips, even as the sound of gunfire and bombings resonate outside meager facilities.

… Read More

Image: By yeowatzup from Katlenburg-Lindau, Germany – San’a, Yemen, CC BY 2.0, https://commons.wikimedia.org/w/index.php?curid=24520831

Be the first to like.
Share

Fortune

Tags: , , , , , , , , , ,

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.

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

Trust, Communities, and the Standing to Hold Accountable

by Thomas Wilk 

ABSTRACT. During the 2016 US Presidential campaign and in the aftermath of the election of Donald Trump, many of us have tried to hold friends, family, and acquaintances accountable for their support of a candidate and campaign that we judged to be racist, xenophobic, sexist, transphobic, ableist, and authoritarian. Even when our friends and family avowed, for example, anti-racist norms, our attempts to hold them to those norms were often met with rejections of our standing to do so: What gives you the right to call me out for my vote? In this paper, I argue for the regrettable conclusion that these challenges to our standing to hold are, in at least some cases, justified on the grounds that the targets of our holdings have little evidence that we would allow ourselves to be reciprocally held accountable. As such, recognizing our standing to hold them accountable would be a threat to their agency. I conclude by arguing that we now ought to engage in a project of rebuilding the kinds of communities in which the mutual trust that is foundational to our moral practices can be rebuilt.

 

INTRODUCTION

Who are you to tell me what I should do? What gives you the right to order me around? How dare you call me a racist!? Many of us have heard these refrains over the course of the 2016 US Presidential campaign and since the election of Donald Trump. We try talk to Trump supporters—family, former classmates, hometown friends, and online acquaintances—about the racism, xenophobia, sexism, transphobia, ableism, and authoritarianism that some of us have judged to be endemic to his campaign and nascent administration.

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.