Tag: doctors

Bioethics Blogs

Teaching Disability Studies in the Era of Trump by Pamela Block

In spring semester of 2017 we (Pam Block and Michele Friedner) co-taught the graduate course “Conceptual Foundations of Disability Studies.” Though the readings were the same as in previous iterations of the course, the emphasis and tone of the class shifted, not just because of the co-teaching but because we were now teaching in a context in which the rights and lives of disabled people are at increased risk. This essay will focus on one class session devoted to a discussion of how disability studies and eugenics are strikingly intertwined in some ways, and why it is salient and important to think about eugenics in the present moment, especially in relation to the current United States presidency.

Eugenics opens up a way to talk about immigration; traits and qualities of and in people; desirability; deservedness; “good” and “bad” science; and the making of facts. Eugenics comes to mind when we think of silencing and containing nasty women and ejecting bad hombres. While we are not arguing that Trump himself advocates eugenics, we argue that a study of the history of eugenics offers an entry point to considering the emergence of past and present norms and normals, especially in relation to perspectives on bodily variation. We also think that a discussion of eugenics affords different ways of conceptualizing what disability studies scholars Snyder and Mitchell (2010) call “able-nationalism,” (riffing off of Puar’s (2007) work on homonationalism). That is, a discussion of eugenics allows for consideration of how disability—and the values attached to it– is mobilized in different time periods, in the service to the nation.

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

Double Dutch euthanasia evokes sympathy through age and romance

by Craig Klugman, Ph.D.

O true apothecary!
Thy drugs are quick. Thus with a kiss I die.
– Romeo & Juliet, Act 5, Scene 3

In a scene reminiscent of Romeo and Juliet, a Dutch couple were voluntarily euthanized together after sharing their final kiss. Nic Elderhorst, 91, had a stroke 5 years ago that left him with limited mobility and chronic pain. Trees, 91, his wife and primary caregiver, had declining physical health and was diagnosed with vascular dementia. She feared that she could no longer care for him. Both feared living without the other and had stated for a long time that they had hoped to die together.

Headlines around the world focused on the romance of their euthanasia. “Dying Together was their deepest wish” declared one British paper. Another said “Loving couple, 91, pass away in rare double euthanasia” not only showing the romance, but changing the active process of killing to the metaphor of “passing away.” “Elderly couple got ‘deepest wish’ declared the Washington Post. “Elderly couple kiss, hold hands before double-euthanasia” was published in New Zealand.

The Netherlands is one of the few countries in the world that permits voluntary euthanasia, where a physician administers a drug to fulfill a person’s request to end his/her life. To qualify, a patient must make a considered request, have unbearable and hopeless suffering, be informed about the situation and future possibilities, and have no reasonable alternatives. Thus, a person does need to have a “terminal illness” or “irreversible condition” in order to request and receive life-ending procedures.

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

Will CRISPR fears fade with familiarity?

With all these ‘test tube’ babies grown up, how have our reactions to the technology evolved? AP Photo/Alastair Grant

The first “test-tube baby” made headlines around the world in 1978, setting off intense debate on the ethics of researching human embryos and reproductive technologies. Every breakthrough since then has raised the same questions about “designer babies” and “playing God” – but public response has grown more subdued rather than more engaged as assisted reproductive technologies have become increasingly sophisticated and powerful.

As the science has advanced, doctors are able to perform more complex procedures with better-than-ever success rates. This progress has made in vitro fertilization and associated assisted reproductive technologies relatively commonplace. Over one million babies have been born in the U.S. using IVF since 1985.

And Americans’ acceptance of these technologies has evolved alongside their increased usage, as we’ve gotten used to the idea of physicians manipulating embryos.

But the ethical challenges posed by these procedures remain – and in fact are increasing along with our capabilities. While still a long way from clinical use, the recent news that scientists in Oregon had successfully edited genes in a human embryo brings us one step closer to changing the DNA that we pass along to our descendants. As the state of the science continues to advance, ethical issues need to be addressed before the next big breakthrough.

Birth of the test-tube baby era

Louise Brown was born in the U.K. on July 25, 1978. Known as the first “test-tube baby,” she was a product of IVF, a process where an egg is fertilized by sperm outside of the body before being implanted into the womb.

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

Doctors Plan Bold Test of Gene Therapy on Boys with Muscular Dystrophy

August 17, 2017

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In 1990, a British muscular dystrophy researcher, Kay Davies, described the unusual case of a 61-year-old man who by rights should not have been alive, based on what was known of the disease at that time.

The muscle wasting disease is caused by mutations to the dystrophin gene. Even just one wrong genetic letter can mean early death. Remarkably, the man Davies described was missing 46 percent of the gene. Yet there he was, still walking with the aid of a stick in his seventh decade.

Now that 27-year-old discovery is leading to what could be the best chance to treat—and maybe stop—a serious form of the disease, Duchenne muscular dystrophy.

… Read More

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MIT Technology Review

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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 News

Many Nurses Lack Knowledge of Health Risks for New Mothers, Study Finds

August 17, 2017

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In recent months, mothers who nearly died in the hours and days after giving birth have repeatedly told ProPublica and NPR that their doctors and nurses were often slow to recognize the warning signs that their bodies weren’t healing properly. Now, an eye-opening new study substantiates some of these concerns.

The nationwide survey of 372 postpartum nurses, published Tuesday in the MCN/American Journal of Maternal/Child Nursing, found that many of them were ill-informed about the dangers new mothers face. Needing more education themselves, they were unable to fulfill their critical role of educating moms about symptoms like painful swelling, headaches, heavy bleeding and breathing problems that could indicate potentially life-threatening complications.

By failing to alert new mothers to such risks, the peer-reviewed study found, nurses may be missing an opportunity to help reduce the maternal mortality rate in the U.S., the highest among affluent nations. An estimated 700 to 900 women die in the U.S. every year from pregnancy- and childbirth-related causes and 65,000 nearly die, according to the Centers for Disease Control. The rates are highest for black mothers and women in rural areas. In a recent CDC Foundation analysis of data from four states, nearly 60 percent of maternal deaths were preventable.

… Read More

Image via flickr: AttributionNoncommercial Some rights reserved by Pan American Health Organization PAHO

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ProPublica NPR

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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

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 News

Review of countries where Euthanasia has been legalised. Increaing of involuntary euthanasia, without consent by patients

Euthanasia a Slippery slope that could end in involuntary euthanasia

Euthanasia was legalised in Belgium in 2002, where is defined as “the intentional termination of a patient’s life by a physician at the patient’s request”, so that only voluntary euthanasia may be legally carried out in Belgium (J Med Ethics 41; 625-629, 2015). However, this legal requirement of voluntarism is not always fulfilled.

Thus, a study conducted in Flanders in 1996 found that 3.3% of cases of euthanasia had occurred without the prior request of the patient. In other words, they were involuntary euthanasias. Another study (also in Flanders) found that there had been 1796 cases of involuntary euthanasias (3.2%). A more recent study from 2007 found that the percentage of involuntary euthanasia was 1.8%, while another in 2013 found 1.7%.

However — and we believe this is important — the percentage of involuntary euthanasia in patients who were 80-years-old or over rose to 52.7%, while in those with diseases other than cancer, this figure reached 67.5%. The decision was not discussed with the patient in 77.9% of cases (J Med Ethics 41; 625-629, 2015).

Canada experience

A Recent statement of Professor Somerville, who spent 40 years living and working in Canada,  has recently returned home to Australia to take up the position of Professor of Bioethics in the School of Medicine at The University of Notre Dame Australia, Sydney where she says claims by Australian pro-euthanasia advocates, including media personality Andrew Denton, that euthanasia and assisted suicide is working safely overseas don’t stand up to basic scrutiny.

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.