Tag: uncertainty

Bioethics Blogs

In the Journals – August 2017 by Livia Garofalo

Here is the article round-up for August, put together in collaboration with Ann Marie Thornburg.  There is a special issue section of Social Science and Medicine out this month on Austerity, Health, and Wellbeing (abstracts below). Also of note is a recent ‘Takes a Stand’ statement on the End of AIDS published in Global Public Health by Nora Kenworthy, Richard Parker, and Matthew Thomann. You can take advantage of the article being temporarily free access and on early view here. Enjoy!

 

Cultural Anthropology (Open Access)

Tangles of Care: Killing Goats to Save Tortoises on the Galápagos Islands

Paolo Bocci

If calls to care for other species multiply in a time of global and local environmental crisis, this article demonstrates that caring practices are not always as benevolent or irenic as imagined. To save endemic tortoises from the menace of extinction, Proyecto Isabela killed more than two hundred thousand goats on the Galápagos Islands in the largest mammal eradication campaign in the world. While anthropologists have looked at human engagements with unwanted species as habitual and even pleasurable, I discuss an exceptional intervention that was ethically inflected toward saving an endemic species, yet also controversial and distressing. Exploring eradication’s biological, ecological, and political implications and discussing opposing practices of care for goats among residents, I move past the recognition that humans live in a multispecies world and point to the contentious nature of living with nonhuman others. I go on to argue that realizing competing forms of care may help conservation measures—and, indeed, life in the Anthropocene—to move beyond the logic of success and failure toward an open-ended commitment to the more-than-human.

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

Memo To White Nationalists From A Geneticist: Why White Purity Is A Terrible Idea

On
August 14th, UCLA researchers Aaron Panofsky and Joan Donovan presented
findings of their study,  “When Genetics Challenges a Racist’s Identity: Genetic
Ancestry Testing among White Nationalists,”
 at a sociology
conference in Montreal. They’d analyzed 3,070 comments organized into 70
threads publicly posted to the (sometimes difficult to access) “social movement
online community”  Stormfront.

Former
KKK Grand Wizard Don Black launched Stormfront on March 27, 1995. Posts exceed
12 million, ramping up since the 2016 election season. Panofsky and Donovan’s
report has a lot of sociology speak, such as “scholars of whiteness” and
“affiliative self-fashioning,” amid some quite alarming posts – yet also
reveals a sophisticated understanding of genetics from some contributors.

A
WHITE NATIONALIST ONLINE MEET-UP: STORMFRONT

“We are the voice of the new, embattled White minority!”proclaims the
bold, blood-tinged-hued message on the opening page of Stormfront, the “community
of racial realists and idealists.”
 It’s a site for white nationalists,
who are a little less extreme than white supremacists, who want to dominate the
world from their pinnacle of a perceived racial hierarchy. The Stormfronters
seem more concerned with establishing their white purity – defined as “non-Jewish
people of wholly European descent.”

Yet
the lines between white nationalist and supremacist blur, as Stormfront states, “If Blacks or
Mexicans become a majority, then they will not be able to maintain the White
man’s social, cultural and economic systems because they do not have to (sic)
minds needed to do so.”

The
idea of white rights is rather new, catalyzed by the revolts of the truly
marginalized, murdered, abused, ignored, and enslaved.

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

Memo To White Nationalists From A Geneticist: Why White Purity Is A Terrible Idea

On
August 14th, UCLA researchers Aaron Panofsky and Joan Donovan presented
findings of their study,  “When Genetics Challenges a Racist’s Identity: Genetic
Ancestry Testing among White Nationalists,”
 at a sociology
conference in Montreal. They’d analyzed 3,070 comments organized into 70
threads publicly posted to the (sometimes difficult to access) “social movement
online community”  Stormfront.

Former
KKK Grand Wizard Don Black launched Stormfront on March 27, 1995. Posts exceed
12 million, ramping up since the 2016 election season. Panofsky and Donovan’s
report has a lot of sociology speak, such as “scholars of whiteness” and
“affiliative self-fashioning,” amid some quite alarming posts – yet also
reveals a sophisticated understanding of genetics from some contributors.

A
WHITE NATIONALIST ONLINE MEET-UP: STORMFRONT

“We are the voice of the new, embattled White minority!”proclaims the
bold, blood-tinged-hued message on the opening page of Stormfront, the “community
of racial realists and idealists.”
 It’s a site for white nationalists,
who are a little less extreme than white supremacists, who want to dominate the
world from their pinnacle of a perceived racial hierarchy. The Stormfronters
seem more concerned with establishing their white purity – defined as “non-Jewish
people of wholly European descent.”

Yet
the lines between white nationalist and supremacist blur, as Stormfront states, “If Blacks or
Mexicans become a majority, then they will not be able to maintain the White
man’s social, cultural and economic systems because they do not have to (sic)
minds needed to do so.”

The
idea of white rights is rather new, catalyzed by the revolts of the truly
marginalized, murdered, abused, ignored, and enslaved.

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

Ethical, legal and societal considerations on Zika virus epidemics complications in scaling-up prevention and control strategies

Much of the fear and uncertainty around Zika epidemics stem from potential association between Zika virus (ZIKV) complications on infected pregnant women and risk of their babies being born with

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

Pregnant Women Absent from Zika Vaccine Trials

August 15, 2017

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This uncertainty is a major reason behind researchers’ hesitancy to expose pregnant women to newer vaccines. Women do indeed get vaccinated while pregnant—against the flu or tetanus, diphtheria, and pertussis (Tdap), for example. But “the overall safety for flu and Tdap vaccines was established in very large populations prior to being administered to pregnant women,” says August.

Some vaccines—such as the flu vaccine—included pregnant women in clinical trials. And, notably, pregnant women were included in Phase 3 trials for the new respiratory syncytial virus (RSV) vaccine that prevents a devastating, potentially fatal infection that targets infants.

But recommendations for vaccination during pregnancy are not always backed by clinical trials. “Historically, many of the recommendations have relied on observational data,” writes Johns Hopkins bioethicist Carleigh Krubiner in an email to The Scientist. She, along with August, is part of the working group who wrote the Wellcome Trust-funded guidelines for Zika vaccine administration in expectant moms. In these cases, pregnant women were either intentionally or unintentionally given vaccines, then mother and child were observed.

… Read More

See also: PREGNANT WOMEN & THE ZIKA VIRUS VACCINE RESEARCH AGENDA: ETHICS GUIDANCE ON PRIORITIES, INCLUSION, AND EVIDENCE GENERATION

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The Scientist

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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.

Bioethics Blogs

How Much Should Your Boss and the U.S. Department of Labor Know About Your Opioid Prescription History?

As the
price of health care and uncertainty about health insurance coverage increases,
employers are taking more of an interest in their employees’ health. Indeed,
this is not a new trend as the United States health insurance system has been
employment-based since its creation. However, this trend may seem more
justifiable when the federal government also takes an interest in employees’
health.  From a public health
perspective, monitoring a society’s health is very important but it must be
balanced against the individual’s privacy interest as well as the harms and
benefits of that monitoring. There is also the issue of who/what is the most
appropriate entity to be doing the monitoring.

On June
27, 2017,
the
United States Department of Labor announced
it
will officially be
monitoring
use of opioid prescriptions by workers
under the
Federal Employees’ Compensation Act, which is the law surrounding the worker’s
compensation system.  The announcement
expressed a safety concern based on overdoses and addiction of opioids in the
midst of our current opioid crisis.

When an
employee files a worker’s compensation claim,
the
employer must be notified
and the employer
has access to the health records included in that claim
.
The employer’s access to health records is limited to whatever is included in
the claim and is justified based on the premise that the employer has an
interest in the worker’s compensation claim. However, this new monitoring
system means that an employer will now have access to its employees’ opioid
prescription history, as this is information the U.S. Department of Labor will
be monitoring as part of the worker’s compensation process.

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

How Much Should Your Boss and the U.S. Department of Labor Know About Your Opioid Prescription History?

As the
price of health care and uncertainty about health insurance coverage increases,
employers are taking more of an interest in their employees’ health. Indeed,
this is not a new trend as the United States health insurance system has been
employment-based since its creation. However, this trend may seem more
justifiable when the federal government also takes an interest in employees’
health.  From a public health
perspective, monitoring a society’s health is very important but it must be
balanced against the individual’s privacy interest as well as the harms and
benefits of that monitoring. There is also the issue of who/what is the most
appropriate entity to be doing the monitoring.

On June
27, 2017,
the
United States Department of Labor announced
it
will officially be
monitoring
use of opioid prescriptions by workers
under the
Federal Employees’ Compensation Act, which is the law surrounding the worker’s
compensation system.  The announcement
expressed a safety concern based on overdoses and addiction of opioids in the
midst of our current opioid crisis.

When an
employee files a worker’s compensation claim,
the
employer must be notified
and the employer
has access to the health records included in that claim
.
The employer’s access to health records is limited to whatever is included in
the claim and is justified based on the premise that the employer has an
interest in the worker’s compensation claim. However, this new monitoring
system means that an employer will now have access to its employees’ opioid
prescription history, as this is information the U.S. Department of Labor will
be monitoring as part of the worker’s compensation process.

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

What We Do When We Resuscitate Extremely Preterm Infants

by Jeremy R. Garrett, Brian S. Carter & John D. Lantos

This editorial is made available on bioethics.net. The editorial along with the target article and open peer commentary is available via tandfonline.com

Neonatal intensive care is one of the most successful medical innovations of the last half century. Every year, in the United States alone, nearly 500,000 babies are born prematurely. Before neonatal intensive care, most of those babies died, and those who survived often suffered significant life-limiting impairments. Today, most preemies survive without impairments.

In spite of this success, neonatal intensive care unit (NICU) care has always been viewed as ethically problematic. The objections to this care have taken different forms at different times.

Economists questioned whether neonatal intensive care was cost-effective. Careful studies showed that it was more cost-effective than any other form of intensive care, and even more cost-effective than many modalities of preventive care (including, for example, Pap smears).

Some parents claimed that doctors were not honestly informing them of the potential long-term sequelae of NICU care, and that, if honestly informed, many parents would choose palliative care. Careful studies showed that these parents were unusual. Most parents want more intensive care than even doctors and nurses think is appropriate, and they want it even when informed that survivors might be left with significant disabilities.

Bioethicists and doctors argued that neonatologists were playing God, that premature babies were not full-fledged persons, and that saving disabled babies was like an ill-conceived military mission. Each of these attempts to undermine the commitment made by parents, doctors, and society to saving preemies has been met with hard questions and strong rebuttals.

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

The Scariest Part of Genetic Testing?

July 31, 2017

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AnneMarie Ciccarella, a fast-talking 57-year-old brunette with a more than a hint of a New York accent, thought she knew a lot about breast cancer. Her mother was diagnosed with the disease in 1987, and several other female relatives also developed it. When doctors found a suspicious lump in one of her breasts that turned out to be cancer, she immediately sought out testing to look for mutations in the two BRCA genes, which between them account for around 20 per cent of families with a strong history of breast cancer.

Ciccarella assumed her results would be positive. They weren’t. Instead, they identified only what’s known as a variant of unknown or uncertain significance (VUS) in both BRCA1 and BRCA2. Unlike pathogenic mutations that are known to cause disease or benign ones that don’t, these genetic variations just aren’t understood enough to know if they are involved or not.

“I thought you could have a mutated gene or not, and with all the cancer in my family, I believed I would carry a mutation. I didn’t know there was this huge third category,” she says. “I got no information – it felt like a huge waste of blood to get a giant question mark.”

Thousands of people have had their BRCA genes tested for increased genetic susceptibility to breast, ovarian, prostate and other cancers. About 5% have learned that they carry a VUS. That number is even higher for other genes: in one study, almost 20% of genetic tests returned a VUS result.

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

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.