Tag: ethicists

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

Guest Post: Track Authorities Are Wrong To Ban Women With Naturally High Testosterone levels

Michael S. Dauber, MA

 According to a story by Catherine Caruso published in STAT News this week, authorities at the International Association of Athletics Federations (IAAF) are getting set to debate whether or not women with hyperandrogenism, or higher-than-expected testosterone levels, should be restricted from competing against women with “normal” or “expected” levels. The debate over the IAAF rules began in 2011, when a rule was first created to prevent women with high testosterone levels competing because of the belief that their hormone levels gave them an unfair advantage. The rule was challenged in 2015, and the IAAF was given two years to provide further justification for its position.

As Caruso writes, the main focus of the current controversy is the legal case of Dutee Chand, an Indian athlete whose testosterone levels exceed “the 10 nanomoles per liter limit, the level deemed to be the lower end of the ‘male range,’” i.e., the amount of testosterone in the blood typically exhibited by male athletes. Testosterone is widely considered a hormone that assists in athletic performance, given that it increases the rate of muscle development and bone mass, among other traits. The idea behind the IAAF’s position is that “unnaturally” high levels of testosterone that exceed levels typical of one’s gender would give such athletes an unfair advantage over other competitiors. Insofar as the IAAF is concerned with creating the fairest competition possible, the presence of elevated testosterone levels in a select group of athletes, like Chand, presents a serious problem.

The problem with the IAAF’s position, however, is that it overlooks one of the central nuances of sporting ethics.

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

The Politics of Elder Care, Social Care, and the “Dementia Tax”: A View from the United Kingdom

By Richard Ashcroft
Professor Richard Ashcroft, an AJOB Neuroscience Editorial Board member, teaches medical law and ethics at both the undergraduate and postgraduate level in the Department of Law at Queen Mary University of London.

The United Kingdom has recently gone through a General Election. The main reason the election was called by Prime Minister Theresa May was to secure a stronger mandate for the ruling Conservative Party, which was governing with a small overall majority of 19 seats over the Opposition parties. PM May’s argument was that in the negotiations with the other member states of the European Union over the UK’s exit from that Union (Brexit), an increased majority would give her a stronger bargaining position. As the election turned out, the electorate returned the Conservatives with fewer seats, and PM May had to form a minority administration, with a partial agreement to support the Conservative Party made with one of the smaller parties, the Democratic Unionist Party, which only contests seats in Northern Ireland. As a result PM May has a working majority, but one that is more fragile, rather than stronger.
Commentators have suggested a number of reasons for this outcome, but there seems to be general agreement that a turning point in the electoral campaign was the release of the election manifesto of the Conservative Party. While there are many reasons that might explain the downturn in support for PM May, one particular policy announced in the manifesto, deemed the “dementia tax,” attracted widespread criticism. 

UK population distribution.
Image courtesy of Wikimedia Commons.

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

Charlie Gard: An Ethical Analysis of a Legal non-Problem

(Cross-posted from EJIL: Talk!)

For those with an internet connection and an interest in current affairs, the story of Charlie Gard been hard to avoid recently.  A decent précis is available here; but it’s worth rehearsing.

Shortly after his birth, Charlie’s health began to deteriorate, and he was diagnosed with a terminal and incurable mitochondrial DNA depletion syndrome.  By March 2017, Charlie needed artificial ventilation, and doctors at Great Ormond Street Children’s Hospital (GOSH) applied to the High Court for confirmation that removing that ventilation would be lawful, having judged that it was not in his best interests.  This was contested by his parents, Chris Gard and Connie Yates; the High Court ruled in favour of GOSH.  This was confirmed by the Supreme Court and the European Court of Human Rights.  During all this time, Charlie remained ventilated.

In the High Court, Mr Justice Francis said that his decision was subject to revision should new evidence emerge favouring continued treatment; in July, Charlie’s parents returned to the High Court, claiming that Charlie might benefit from an experimental treatment being offered by Professor Michio Hirano of Columbia University.  However, as proceedings advanced, it became clear that Hirano’s proposed treatment had never been used on patients like Charlie, that he had neither seen Charlie nor read his notes when he offered the treatment, and that he had a financial interest in that treatment.  The position statement issued by GOSH on the 24th July barely hides the hospital’s legal team’s exasperation.  On the 24th July, Charlie’s parents dropped their request for continued treatment. 

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

Few Americans Plan For End-of-Life Decisions, Even If They Are Sick

Michael S. Dauber, MA, GBI Visiting Scholar

Many moral dilemmas faced by clinicians, patients, and their families arise when individuals have not made plans for the end of their lives or discussed their wishes with their loved ones. To prevent and mitigate these issues, ethicists have suggested for decades that individuals should complete documents such as advanced directives like living wills (legal documents that indicate one’s wishes for interventions like intubation and cardiopulmonary resuscitation (CPR)), and to name a healthcare proxy (an individual to make decisions on one’s behalf in the event one becomes unable). Such measures tend to make it easier for individuals to address moral dilemmas in practice and to determine the ethically appropriate surrogate decision maker for a patient.

According to a recent study published in Health Affairs, few Americans have taken either of these measures. Researchers compiled results from over 150 studies of end-of-life planning measures and determined that only 36.7 percent of those surveyed had completed some sort of advanced directive, with 29.3 percent of those individuals completing living wills and 33 percent empowering a healthcare proxy. The study also found that 42 percent of individuals aged 65 or older had completed some sort of advanced directive, as opposed to 32 percent of individuals younger than 65.

There are several reasons why individuals may be hesitant to complete healthcare proxies. Many young people may feel they can put off decisions about care at the end of their lives because such matters are comparatively unlikely to occur in the short term.

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

Web Round Up: Time to Chill? Egg Freezing and Beyond by Moira Kyweluk

A focus on age-related fertility decline, and exploration of ways to expand the timeline and options for biological parenthood have been consistent cultural and web-wide fixations. The $3 billion United States fertility industry was in the headlines once again this month including coverage of the launch of Future Family, a service offering  a “fertility age test” to women and negotiated-rate infertility medical care, alongside newly published research on ovarian tissue preservation, an alternative to oocyte cryopreservation or “egg freezing”, both procedures aimed at potentially extending a woman’s fertility window.

In the wake of findings presented in July 2017 at the European Society of Human Reproduction and Embryology conference in Geneva, Switzerland by Marcia Inhorn, Professor of Anthropology and International Affairs at Yale University, popular media headlines blared:  “Why are women freezing their eggs? Because of the lack of eligible men”  and “Women who freeze their eggs aren’t doing it for career reasons.” The study analyzed interviews from 150 women in their late 30s and early 40s who opted for egg freezing in Israel and the United States. Results “show that women were not intentionally postponing childbearing for educational or career reasons, as is often assumed in media coverage of this phenomenon, but rather preserving their remaining fertility because they did not have partners to create a family with. The researchers conclude that women see egg freezing as ‘a technological concession to the man deficit’, using it to ‘buy time’ while continuing their search for a suitable partner to father their children.”

The American Society of Reproductive Medicine, the regulatory board that governs the safe and ethical use of fertility technologies, reclassified egg-freezing technology from “experimental” to standard-of-care in 2012.

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 Women are Surrogate Mothers: Is that work?

Alana Cattapan, Angela Cameron, and Vanessa Gruben warn that speaking about “compensation” is a way of avoiding difficult conversations about payment to surrogates.

__________________________________________

A recent Canadian Medical Association Journal (CMAJ) news article reported that the Canadian Fertility and Andrology Society (CFAS) has called for the federal government to reconsider the ban on payment for surrogacy in Canada. The article suggests that industry professionals and academics alike are coming around on compensation for surrogacy, with support growing all the time.

In Canada, payment for surrogacy, egg donation, and sperm donation is banned under the 2004 Assisted Human Reproduction Act. Under the Act, surrogates (like egg donors and sperm donors) can be reimbursed for receipted expenses. With a note from their doctor, surrogates can also receive some money for lost work-related income during pregnancy.

The Act states that this reimbursement of expenses must follow the relevant regulations. Until now, however, these regulations have never been drafted. After more than a decade, Health Canada is now in the throes of making them. This is occurring as surrogacy in Canada is expanding to accommodate more and more people from countries where surrogacy is more expensive, harder to access or banned completely.

Women Working in a Field by Winslow Homer 1867.

It is in this context that the CFAS (which is a part-medical association, part-industry organization representing the fertility industry and its doctors, lawyers, scientists and ethicists) has called for the government to reconsider the ban on payment.

 It is important to know that the market in surrogacy in Canada is a profitable one.

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.