Tag: clinical ethics

Bioethics Blogs

Harvey and Irma: Bioethics in Natural Disasters

by Craig Klugman, Ph.D.

This is a time of disaster. Last week Hurricane Harvey devastated Southeast Texas, a place where I did my doctoral studies. This week we are awaiting Hurricane Irma, the strongest hurricane to head toward South Florida in 25 years. My family lays in the path of that coming storm. I first became interested in natural disaster in 1989 when my college campus was jolted by a 7.1 earthquake in Northern California.

Bioethics has a role in responding to and preparing for these natural disasters. Most every state, large city and county, and most hospitals have been working on crisis standards of care plans. In 2009 and again in 2012, the Institute of Medicine recommended governments to undertake such planning. Many of us working in bioethics have been involved in these efforts. More specifically, we have been involved with developing ethical frameworks for decision-making, policy-making, and operations during emergency planning.

I worked with Texas during its planning for pandemic flu and for the last 3 years have been part of the ethics subcommittee of Illinois’ workgroup, most recently as chair. Similar groups have produced excellent reports in many places such as Delaware, North Carolina, Michigan, Minnesota, Tennessee, Texas and Toronto. They offer guidance and justification for a varied set of guiding principles and ethical frameworks. All of them hold certain core ideals in common.

First, all of the reports agree that transparency and open communication is essential. Planning needs to involve not only government officials, but also community members.

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

Does Female Genital Mutilation Have Health Benefits? The Problem with Medicalizing Morality

By Brian D. Earp (@briandavidearp)

Please note: this piece was originally published in Quillette Magazine.

 

Four members of the Dawoodi Bohra sect of Islam living in Detroit, Michigan have recently been indicted on charges of female genital mutilation (FGM). This is the first time the US government has prosecuted an “FGM” case since a federal law was passed in 1996. The world is watching to see how the case turns out.

A lot is at stake here. Multiculturalism, religious freedom, the limits of tolerance; the scope of children’s—and minority group—rights; the credibility of scientific research; even the very concept of “harm.”

To see how these pieces fit together, I need to describe the alleged crime.

* * *

The term “FGM” is likely to bring to mind the most severe forms of female genital cutting, such as clitoridectomy or infibulation (partial sewing up of the vaginal opening). But the World Health Organization (WHO) actually recognizes four main categories of FGM, covering dozens of different procedures.

One of the more “minor” forms is called a “ritual nick.” This practice, which I have argued elsewhere should not be performed on children, involves pricking the foreskin or “hood” of the clitoris to release a drop of blood.

Healthy tissue is not typically removed by this procedure, which is often done by trained clinicians in the communities where it is common. Long-term adverse health consequences are believed to be rare.

Here is why this matters. Initial, albeit conflicting reports suggest that the Dawoodi Bohra engage in this, or a similar, more limited form of female genital cutting – not the more extreme forms that are often highlighted in the Western media.

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

Does Female Genital Mutilation Have Health Benefits? The Problem with Medicalizing Morality

Does Female Genital Mutilation Have Health Benefits? The Problem with Medicalizing Morality

By Brian D. Earp (@briandavidearp)

Please note: this piece was originally published in Quillette Magazine.

 

Four members of the Dawoodi Bohra sect of Islam living in Detroit, Michigan have recently been indicted on charges of female genital mutilation (FGM). This is the first time the US government has prosecuted an “FGM” case since a federal law was passed in 1996. The world is watching to see how the case turns out.

A lot is at stake here. Multiculturalism, religious freedom, the limits of tolerance; the scope of children’s—and minority group—rights; the credibility of scientific research; even the very concept of “harm.”

To see how these pieces fit together, I need to describe the alleged crime.

* * *

The term “FGM” is likely to bring to mind the most severe forms of female genital cutting, such as clitoridectomy or infibulation (partial sewing up of the vaginal opening). But the World Health Organization (WHO) actually recognizes four main categories of FGM, covering dozens of different procedures.

One of the more “minor” forms is called a “ritual nick.” This practice, which I have argued elsewhere should not be performed on children, involves pricking the foreskin or “hood” of the clitoris to release a drop of blood.

Healthy tissue is not typically removed by this procedure, which is often done by trained clinicians in the communities where it is common. Long-term adverse health consequences are believed to be rare.

Here is why this matters. Initial, albeit conflicting reports suggest that the Dawoodi Bohra engage in this, or a similar, more limited form of female genital cutting – not the more extreme forms that are often highlighted in the Western media.

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

Topsy-Turvy Brand Name Drug Pricing?

On August 7, 2017, The
New York Times
with ProPublica
(an independent, non-profit investigative new agency) reported
that some drug companies have struck deals with insurers to require that
prescriptions be dispensed for the more expensive brand name drug rather than
the less expensive generic alternative! Has the world turned upside down? What
has happened? Perhaps one could respond: Follow the money.

Pharmaceutical companies have apparently cut a deal with
health insurance companies and pharmacy benefits managers for some drug
products so that middle men pay prices that are very competitive, at least as
competitive as the generic equivalents. In one arrangement for a particular
drug – Shire’s Adderall XR, used to treat attention deficit hyperactivity
disorder (ADHD) – UnitedHealthcare insured patients were provided a discount
coupon which lowered the cost of the brand name considerably, but a patient’s
family still payed about $50 more a month than for the generic. Consumers
clearly are bearing the increased costs.

A spokesman for United Healthcare defended the program: “By
providing access to these drugs at lower cost, we are able to improve
affordability for our customers and members.” Of course, the statement is true,
but it is a poor justification because in this instance have no choice in the
matter. Even if patients’ physicians write for the generic equivalent, the
doctors are told that they “had to specify that patients required brand-name
versions of the drug.” This may or may not be true depending on the health
insurers’ and pharmacy benefits managers’ formulary requirements; but it may be
a moot point if the band name drug is the only one available, or unless the
patient wants to pay full price for a drug product that is not listed in the
formulary.

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

Topsy-Turvy Brand Name Drug Pricing?

On August 7, 2017, The
New York Times
with ProPublica
(an independent, non-profit investigative new agency) reported
that some drug companies have struck deals with insurers to require that
prescriptions be dispensed for the more expensive brand name drug rather than
the less expensive generic alternative! Has the world turned upside down? What
has happened? Perhaps one could respond: Follow the money.

Pharmaceutical companies have apparently cut a deal with
health insurance companies and pharmacy benefits managers for some drug
products so that middle men pay prices that are very competitive, at least as
competitive as the generic equivalents. In one arrangement for a particular
drug – Shire’s Adderall XR, used to treat attention deficit hyperactivity
disorder (ADHD) – UnitedHealthcare insured patients were provided a discount
coupon which lowered the cost of the brand name considerably, but a patient’s
family still payed about $50 more a month than for the generic. Consumers
clearly are bearing the increased costs.

A spokesman for United Healthcare defended the program: “By
providing access to these drugs at lower cost, we are able to improve
affordability for our customers and members.” Of course, the statement is true,
but it is a poor justification because in this instance have no choice in the
matter. Even if patients’ physicians write for the generic equivalent, the
doctors are told that they “had to specify that patients required brand-name
versions of the drug.” This may or may not be true depending on the health
insurers’ and pharmacy benefits managers’ formulary requirements; but it may be
a moot point if the band name drug is the only one available, or unless the
patient wants to pay full price for a drug product that is not listed in the
formulary.

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

Ethics Committees Should Have Standards in Preparing New Members

Guest Post: Danish Zaidi and Jennifer Kesselheim
Paper: Assessment of orientation practices for ethics consultation at Harvard Medical School-affiliated hospitals

Ethics advisory committees (EACs), or clinical ethics committees, fulfill an important role in hospitals, providing ethics consultation, contributing to hospital-wide policies, and educating staff on ethical dimensions of medical practice. Our study built upon a central question: what qualifies one to serve on these sorts of committees? It’s a question with added relevance to us as authors: Danish Zaidi was part of the inaugural class of the Harvard Medical School Master of Bioethics program and Jennifer Kesselheim is an EAC co-chair and the founding director of the Harvard Medical School Master of Medical Sciences (MMSc) in Medical Education program. We studied how EACs recruit and educate members of their committees. In particular, what orientation practices were use in educating new members of EACs and how did members perceive confidence were member in fulfilling their duties on the other end of their “orientation”?

In recent years, the American Society for Bioethics & Humanities (ASBH) has made efforts to improve and standardize practices in ethics consultation across medical institutions. The ASBH has published two foundational books regarding ethics consultation and recently their Board of Directors approved the development of a healthcare ethics consultation (HCEC) certification program. Such efforts allude to a desire for standards in ethics consultation. As such, we turned to the ASBH Core Competencies in Healthcare Ethics Consultation to identify areas that we felt committee members should have familiarity with, using these competencies as metrics to develop our survey instrument.

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

End-of-Life Healthcare Sessions at ASBH 2017

The 2017 ASBH
conference
 in October 2017 includes over 400 workshops, panels, and
papers in bioethics and the health humanities.  Here are ones that pertain
to end-of-life issues.


THURSDAY, OCTOBER 19


THU 1:30 pm:  End-of-Life Care and Decision-Making in the ICU – Limited
English Proficiency as a Predictor of Disparities (Amelia Barwise)


Importance: Navigating choices in predominantly English-speaking care settings
can present practical and ethical challenges for patients with limited English
proficiency (LEP). Decision-making in the ICU is especially difficult and may
be associated with disparities in health care utilization and outcomes in critical
care. 


Objective: To determine if code status, advance directives, decisions to limit
life support, and end-of-life decision-making were different for ICU patients
with LEP compared to English-proficient patients. 


Methods: Retrospective cohort study of adult ICU patients from
5/31/2011-6/1/2014. 779 (2.8%) of our cohort of 27,523 had LEP. 


Results: When adjusted for severity of illness, age, sex, education, and
insurance status, patients with LEP were less likely to change their code
status from full code to do not resuscitate (DNR) during ICU admission (OR,
0.62; 95% CI, 0.46-0.82; p


Conclusion: Patients with LEP had significant differences and disparities in
end-of-life decision-making. Interventions to facilitate informed
decision-making for those with LEP is a crucial component of care for this
group.


THU 1:30 pm:  “But She’ll Die if You Don’t!”: Understanding and
Communicating Risks at the End of Life (Janet Malek)


Clinicians sometimes decline to offer interventions even if their refusal will
result in an earlier death for their patients. For example, a nephrologist may
decide against initiating hemodialysis despite a patient’s rising creatinine
levels if death is expected within weeks even with dialysis.

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

Authorship and Pets

The International Committee of Medical Journal Editors is an
influential group that, as expected, takes publication and authorship very
seriously.  They have issued the most
generally accepted definition of the criteria for authorship of scientific
publications. They list these criteria very clearly and unambiguously on their website.
These criteria are:

“The ICMJE
recommends that authorship be based on the following 4 criteria:

  •            Substantial
    contributions to the conception or design of the work; or the acquisition,
    analysis, or interpretation of data for the work; AND

  •          Drafting the
    work or revising it critically for important intellectual content; AND
  •           Final
    approval of the version to be published; AND
  •          Agreement to
    be accountable for all aspects of the work in ensuring that questions related
    to the accuracy or integrity of any part of the work are appropriately
    investigated and resolved. “
  • They go on to say “All those designated as authors
    should meet all four criteria for authorship, and all who meet the four
    criteria should be identified as authors.” There does not seem to leave much
    doubt as to their meaning. The practise of guest authorship, including authors
    with non-substantive contributions by virtue of their position was once common
    but is now considered inappropriate. However, no simple set of guidelines can
    address all possible circumstances. Which raises the point I am addressing in
    this blog: What about pets?

    An important paper
    on atomic behaviour published in Physical Reviews by Jack Hetherington and
    F.D.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.