Parental autonomy once again at center of UK controversy over child’s care

Following the two high-profile cases of Charlie Gard and Alfie Evans, parents’ right to pursue medical care for their child deemed futile by doctors is once again at stake in the UK.

Tafida Raqeeb
Photo courtesy of BBC news.

Tafida Raqeeb suffered a traumatic brain injury in February of 2019 as a result of a arteriovenous malformation. Tafida’s mother, Shelina Begum, and her father, Mohammed Raqeeb, want to seek additional treatment for the five year old in Italy. But the Royal London Hospital says releasing her is not in the child’s best interests. A spokesperson for Barts Health NHS Trust announced that its clinicians and independent medical experts had determined “further medical treatment would not improve her condition”.

In England, the Children Act 1989 gives parents the responsibility to determine what happens to their child, including the right to consent or refuse medical treatment. However this right is not absolute, and a public body can challenge a parent’s judgment as not in the best interest of a child through the court system. A judge then makes a decision based on the best interest of the child.

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In 2016, Alfie Evans‘ parents fought to have him transferred to Rome for treatment after he was born with a degenerative neurological condition. When this request was denied, his parents appeal as far as the European Court of Human Rights, as well as appealing to the Pope. Alfie was granted emergency citizenship by the Italian Ministry of Foreign Affairs, however the UK court still denied the request for transfer. Life support was withdrawn. In 2017, Charlie Gard’s parents fought to bring him to the United States to receive experimental treatment for encephalomyopathic mitochondrial DNA depletion syndrome. Their request was denied, and the infant was eventually removed from life support.

At the heart of these tragic cases is a conflict between the principle of autonomy and the principle of non-maleficence. The right for parents to choose medical treatment for their child is a key component of the principle of autonomy. At the same time, this must be balanced with the principle of non-maleficence, which guides against treatments that cause additional suffering with no anticipated benefit from the treatment to offset the harm.

Tafida’s case will be heard by the UK High Court on September 9th.

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After successful new treatment, Ebola considered curable

Amidst a devastating outbreak, scientists and doctors in the Democratic Republic of Congo have been running clinical trials on experimental Ebola treatments. Now, they have been successful. While an experimental vaccine had been providing protection from catching the virus, the new treatments are groundbreaking for people who are already infected.

Photo courtesy of Wired.com

New monoclonal antibody treatments were able to lower death rates to as low as 11% for those treated soon after being infected. With this good news and success there is still a lot to be done, however, in terms of containing the Ebola epidemic.

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With the WHO’s announcement a new trial will now kick off, directly comparing Regeneron to mAb114, which is being produced by a Florida-based company called Ridgeback Biotherapeutics. And all Ebola treatment units in the outbreak zone will now only administer the two most effective monoclonal antibody drugs, according to the WHO’s director of health emergencies, Mike Ryan.

“Today’s news puts us one more step to saving more lives,” said Ryan. “The success is clear. But there’s also a tragedy linked to the success. The tragedy is that not enough people are being treated. We are still seeing too many people staying away from treatment centers, people not being found in time to benefit from these therapies.”

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UN report names meat consumption as major contributor to climate change

An August 2019 report from the UN on land use and climate change names the production and consumption of meat as a major contributor to climate change. While the report stopped short of calling for vegetarianism or veganism, it emphasized that the West’s high consumption of meat and dairy produce is fueling global warming.

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The question of the morality of eating meat is approached in bioethics from the angle of non-human animal suffering as well as the effects of eating meat on human health and welfare. As the link between the production of animal products and climate change has become scientifically established in recent years, environmental concerns have introduced a powerful moral argument for reducing or eliminating the consumption of animal products.

The emphasis of the report is also a pressing reminder of the effects of our daily lifestyle and consumer choices on overall global health.

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Coercion in childbirth destroys informed consent, whether from docs or partners
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Over at Vice yesterday, Rachael Sigee has an article that is worth a look: When Domestic Abuse Destroys Your Childbirth Plan. The subtitle? “Over a third of domestic violence gets worse or starts during pregnancy. Two women break down what it’s like to survive abuse while giving birth.”

Sigee writes:

Despite having had a traumatic emergency caesarean with her first child, Selina’s husband thought she should have a VBAC (vaginal birth after caesarean) for her second. Specifically, a water birth at home with no pain relief. She recalls telling his family she did not want him at the birth, but “they thought I was this crazy, hormonal, pregnant woman.”

It was only when Selina’s mother intervened that her now ex-husband drove her to A&E. Once there, he continued to insist: “You can do this naturally. The medicine is bad for the baby. You are so strong.”

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Like many comments from abusers who specialize in controlling and manipulating their targets, this has what philosophers and linguists call “attributional ambiguity”: it could be motivated by concern and admiration but it could also be motivated by utter disregard for the person’s own stated preferences and identity. Only the pattern of behavior tells us which it might be. For Selina, that pattern revealed a desire to control and manipulate and included a not-uncommon (for abusers) diversion of services intended for her, from her, to him.

“This went on for about 30 hours,” Selina remembers. “I didn’t have any pain relief and at that point I told the doctor, ‘Give me everything you have.’” In fact, her husband was secretly helping himself to her gas and air.

During their nine-year relationship, Selina, now in her early thirties, was subjected to physical, psychological and financial abuse. His controlling behaviour pulverised her autonomy. It also extended to her birth plan. “At the time I didn’t think of it as pushy or sinister,” she says. “It was very encouraging and persuasive.”

Her story exists under the umbrella of coercive control, which became a crime in England and Wales in 2015. Signs include isolating someone from friends and family, depriving them of basic needs, monitoring their time and activities and humiliating, degrading or dehumanising treatment.

Head over to the article and read it in full for more on this issue, which is underattended in the literature on informed consent. It’s pretty easy to see how this is a problem for the kind of individualistic isolated autonomy perspective that dominates bioethics. But things get usefully nuanced when we ask, how can we make sense of this violation of autonomy from a feminist relational autonomy perspective? And how can this context help us think about similar manipulation/coercion by providers with respect to the decision-making of laboring or pregnant patients?

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The Desperate Measure of Womb Removal in Healthy Young Women in Rural India
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Whenever we see stories about the “plight” of women in developing nations, it’s critically important to step back and ask whether the journalistic framing is rooted in condescending colonialism, painting a picture of a problem as affecting women in the Global South alone when in fact it spans cultures and nations. This is especially so when it comes to stories about menstruation, as we saw in critical responses to the Oscar-winning documentary film Period. End of Sentence.

A recent BBC story, however, reveals a troubling practice in India–one of many surrounding menstruation–that illuminates:

(1) the kinds of choices women must make when poverty and discrimination leave them few options, and

(2) possible wrongdoing by physicians who do not adequately inform women of the consequences of those choices.

That story, reported by Geeta Pandey in Delhi, asks “Why are menstruating women in India removing their wombs?

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A mural by artist Neelim Mahanta installed in Guwahati, India, on Menstrual Hygeine Day in 2019. For more, see NDTV.

According to Pandey, reports from Indian media in the Western state of Maharashtra reveal:

that thousands of young women have undergone surgical procedures to remove their wombs in the past three years. In a substantial number of cases they have done this so they can get work as sugarcane harvesters. Every year, tens of thousands of poor families from Beed, Osmanabad, Sangli and Solapur districts migrate to more affluent western districts of the state – known as “the sugar belt” – to work for six months as “cutters” in sugarcane fields. Once there, they are at the mercy of greedy contractors who use every opportunity to exploit them. To begin with, they are reluctant to hire women because cane-cutting is hard work and women may miss a day or two of work during their periods. If they do miss a day’s work, they have to pay a penalty.

…Because of the poor hygienic conditions, many women catch infections and, activists working in the region say, unscrupulous doctors encourage them to undergo unnecessary surgery even if they visit for a minor gynaecological problem which can be treated with medicine.

…My colleague Prajakta Dhulap from the BBC’s Marathi language service, who visited Vanjarwadi village in Beed district, says from October to March every year, 80% of villagers migrate to work in sugarcane fields. She reports that half of the women in the village have had hysterectomies – most are under the age of 40 and some are still in their 20s.

Dhulap reports that several women have developed disabling pain since the hysterectomies which has rendered them unable to work, even though it is to be able to work that they underwent the procedure.

Pandey goes on to discuss the claims of garment workers that, instead of being given a day off of work when they suffer from menstrual pain–menstrual leave is granted by some companies in India, by Bihar state in India, and in other nations to varying extents–say they were instead required to stay at work and given medications by their employers. The type of medication, side effects, risks, and benefits of the medication were not disclosed.

Pandey closes by noting that menstrual welfare measures, and indeed centralized government welfare measures generally, “rarely benefit those employed in India’s vast unorganised sector, which means that women like those working in Maharashtra’s sugarcane fields will remain at the mercy of their contractors.”

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A ray of light for feminist bioethics: the growing field of population health science is feminist science
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EDITOR’S NOTE: This contribution comes to us from new contributor Sean Valles, Associate Professor of Philosophy at Michigan State University. Valles studies the interplay of ethics and scientific evidence in population health, including race & migration issues and climate change issues.

“Help, bioethics friends. The bioethics blog I run is all bad news. Do we have ANY good news?” Alison Reiheld posted that question on social media, leading to a conversation and now this blog post. So, to answer her question, I see the growth of the interdisciplinary field “population health science” as good news. This is the field I examine in my book, Philosophy of Population Health: Philosophy for a New Public Health Era (Routledge 2018). I was motivated to make sense of how and why scholars writing about “population health” created a scientific framework that has “an explicit concern with health equity” as a foundational tenet (Diez Roux, 2016, p. 619).

This image shows the cover of Valles's book, Philosophy of Population Health: Philosophy for a new public health era.  The title is splashed across the middle in all capital letters. Above and below it are brightly colored interlocking triangles in an abstract pattern all the way to the edges of the cover.
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Feminist bioethicists and disability theorists speak out on Russia’s use of CRISPR to alter hereditary deafness
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Over at Canada’s Impact Ethics blog, feminist bioethicists and disability theorists Teresa Blankmeyer Burke and Jackie Leach Scully reflect on the Russian project to use CRISPR technologies to “correct a mutation that leads to hereditary deafness.” Blankmeyer Burke and Scully apply the Nuffield Council’s principles on genetic modification to consider the issue. These include a requirement of seriousness of the condition. They ask:

But is deafness a “serious” condition that justifies heritable genome editing? If by “serious” we mean something like “severely compromising any chance of having a good life”, the claim that deafness counts as a serious condition is open to challenge. Audiological deafness is highly variable, ranging from mild hearing impairment to almost complete absence of sound perception. Its effects on people’s well-being are similarly variable, and influenced by the surrounding social attitudes, culture and laws, including civil rights protections. Not all deaf people think they are disabled. Many consider themselves to be simply members of a cultural group that uses signed language to communicate. Those who identify strongly with a thriving signing Deaf community can often express a preference for having deaf children and find attempts to prevent the transmission of heritable deafness offensive and horrific.

While the Siberian couples in this case may want to have hearing children rather than deaf children, that alone doesn’t prove that deafness per se is “serious”; there might be many other factors, including cultural attitudes towards deafness and disability, that are influencing their judgements. Additionally, the experience of these individuals is specific to their particular community, context, and time, which are not necessarily those of their future offspring.

Burke and Scully also consider whether the tech is likely to decrease social justice and increase marginalization. They conclude that “It is wildly premature for any scientist to suggest moving forward now, and particularly irresponsible to do so with a condition that at least some affected people consider to be not a “serious condition”, but just a normal variation of human being.”

You can find their complete argument here.


If you want to read more, here is some of Jackie Leach Scully’s work for IJFAB Blog:

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The Echo Chamber of the True Believer: Anti-Vaxxers, Magical Thinking, and Other Disasters
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There is an article that I suggest ought to be read as widely as possible. Underneath the anti-vaxxer exterior lies much scientific misinformation, compounded by phobias, conspiracy theories, and general hubris that views those who take science and medicine to be areas of substantive, relevant knowledge and practice not just with suspicion, but with contempt. Or, as I was recently told, as “sheeple” who uncritically just accept whatever “big science” and “big medicine” are selling.

To wit, a few quotes from the anti-vaxxer “side” (anonymized to protect the sources):

Because there is no way that they can accept that their most dearly-held beliefs are just that. That germs are real. That disease is real. That they are not ultimately and completely in charge of their health. And that they are not immune to…anything…just by virtue of thinking and wishing that they are.

But often, arguing with people in the anti-vaxxer echo-chamber is a bit like talking to members of the Flat Earth Society. They absolutely need something to be the case — forget the evidence. They seem to truly believe that they, and those who think like them, are in possession of a central and fundamental truth not just about human biology, but about the nature of medicine, healing, and of health itself that is absolute and irrefutable — if only “big science,” “big medicine,” and “big pharma,” along with the media and all those gullible masses who swallow the propaganda, would step aside and let the secret knowledge shine through. This very personal desire to see themselves as possessors of a special, hidden truth — the kind to which only those who are clever enough not to be fooled have access — tends to override any arguments, reasons, evidence, sense itself.

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Megan Rapinoe and Joy in the Bodies We Have
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“Close your knees, girl!”

my Aunt Carolyn to me, age 6

“You’re such a monster!”  “Yeah, Crane monster!”  “Cranemonster!”

kids when I played soccer/football hard during PE (my maiden name: Crane)

“Not only is there a typical style of throwing like a girl, but there is a more or less typical style of running like a girl, climbing like a girl, swinging like a girl, hitting like a girl. They have in common, first, that the whole body is not put into fluid and directed motion, but rather, in swinging and hitting, for example, the motion is concentrated in one body part; and second, that the woman’s motion tends not to reach, extend, lean, stretch, and follow through in the direction of her intention. For many women as they move in sport, a space surrounds them in imagination which we are not free to move beyond; the space available to our movement is a constricted space.” 

–Iris Marion Young, Throwing Like A Girl

Megan Rapinoe, a muscular but lean white athlete with bleached blonde hair died lavender, stands with her feet planted solidly and her arms outstretched, smiling, after scoring a game-changing goal against a difficult opponent..
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Megan Rapinoe striking a now-famous, and much critiqued, goal celebration pose in the USA vs. France game which she repeated in the Final against Netherlands. Within seconds, her team mates jumped on her from behind in shared joy and she bore their weight as they gathered around. IMAGE CREDIT: Getty Images.

Today, July 7 of 2019, the US Women’s National Team won the FIFA Women’s World Cup against a stellar Netherlands team whose goalie won the Golden Glove and whose many excellent players gave up only five goals in the entire Cup. Two of those were to the US in the final match, scored by Rose Lavelle and Megan Rapinoe. Rapinoe won the tournament’s Golden Boot for the most goals scored during the tournament and the Golden Ball for best player of the tournament. Over the course of the 2019 Women’s World Cup, Rapinoe’s goal celebrations have garnered much attention, critiqued for perceived arrogance and lauded for palpable joy.

Watching all of the women’s teams play, I am struck by how the style of women’s movement has evolved in athletics over the years.  Women’s tennis has moved from a constrained style of play to the powerhouse muscular-but-precise styles exemplified by Serena and Venus Williams and a whole new generation of players. Women’s soccer/football, too, has shifted within my lifetime.

The frisson of liberation from  Brandi Chastain’s shirt-removing celebration after kicking the winning penalty in the 1999 Women’s World Cup was in part a liberation from the constraints that Young described and which I felt keenly in my youth, a time when the effects of Title IX on women’s sport in the USA were only beginning to manifest. When I played during my year abroad at University of Aberdeen in the early 90’s, where there was no Title IX, most of the women on the Uni football team hadn’t played since they hit puberty: that was when the leagues dried up and their parents told them it was time to grow up and become young women. Who apparently were not supposed to play soccer. I played with those women and we loved every second of it. It was into that reality that this image of Chastain fell.

Brandi Chastain, skin pale, kneels on the ground, shirt in her hand, sports bra and belly exposed to view, arms up-raised with every muscle tensed, head back and shouting

Brandi Chastain tears her shirt off in celebration after scoring the Cup-winning goal in the 1999 Women’s World Cup. This, too, was roundly critiqued by some for being unladlylike and yet also loved by others for its pure joy.

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The American Medical Association has been “neutral” on state abortion law. That has ended.
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The American Medical Association is intervening in the rapid increase of state legal restrictions on abortion for the first time, according to an article published in TIME magazine this morning.

The American Medical Association is suing North Dakota to block two abortion-related laws, the latest signal the doctors’ group is shifting to a more aggressive stance as the Donald Trump administration and state conservatives ratchet up efforts to eliminate legal abortion.


The group, which represents all types of physicians in the U.S., has tended to stay on the sidelines of many controversial social issues, which, until recently, included abortion and contraception. Instead, it has focused on legislation affecting the practice and finances of large swaths of its membership.


But, says AMA President Patrice Harris, the organization feels that, in light of new state laws in the U.S. that would force doctors who perform abortions to lie to patients—put “physicians in a place where we are required by law to commit an ethical violation”—it has no choice but to take a stand. One of these laws, set to take effect Aug. 1, requires physicians in North Dakota to tell patients that medication abortions—a procedure involving two drugs taken at different times—can be reversed. The AMA said that is “a patently false and unproven claim unsupported by scientific evidence.” North Dakota is one of several states to pass such a measure.

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The AMA goes on to say that they are intervening because the state is intervening in the doctor-patient relationship. Is this less about abortion, and more about controlling doctors’ ability to speak freely to patients about risks, benefits, and alternatives? Does this have implications for the AMA’s position on other legal matters such as so-called “gag rules” on abortion? Will be expecting more legal action by the AMA on these matters?

EDIT: in discussion of this blog post on the IJFAB Facebook page, Monica McLemore noted that the AMA has intervened in the past in ways that deeply affect abortion access, including attempting to limit the ability of midwives to provide reproductive health services in independent practice. Phyllis Brodsky’s 2008 “Where have all the midwives gone?” in Journal of Perinatal Education has some more information on the AMA’s role in advocating for state licensure policies that limit midwifery. McLemore notes that this kind of involvement neither makes the AMA historically neutral on abortion, nor was a result of a historical neutrality. For more on midwifery, see the history blog Nursing Clio’s excellent array of articles.

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The Power of Small Things

In this moving commencement address, Lucila Hanane Takjerad reminds us how dependent we are on small acts of generosity and kindness Erectile dysfunction is said to be a solemn disorder which becomes even worse by the course of time if you are experiencing any of the above symptoms, then you may consider physical therapy as one of the method involve very fine quality of needle, one experiences only minor pain during the injecting process. devensec.com cialis prices in india This penile condition can also cheap viagra in usa be a side effect of the drug. The pills help solve the condition of Erectile Dysfunction safely and generic cialis cipla effectively. generic discount levitra This can help you to improve your performance to a new level. and what world altering change can be wrought by them. She asks us to commit to the “least we can do.”

https://www.youtube.com/watch?v=ewZZl_qyNWU&feature=youtu.be

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Over at the Hastings Center, Nancy Berlinger urges bioethicists to move from outcry to action on migrant crises

In the US, a crisis has arisen due to government handling of much larger than usual numbers of asylum-seeking migrants at the southern border. Most are coming not from Mexico but through Mexico from other Central American and South American nations currently experiencing economic crises and violence. While increased numbers of folks seeking asylum strains the system, a great deal of the crisis is a direct result of how the US is handling the arrival of families and unaccompanied minors (any minor who is not in the company of a parent is deemed an unaccompanied minor even if they are with other family members such as siblings, aunts or uncles, or grandparents).

Recently, 837 bioethics professionals wrote a letter protesting the impact on physical and mental health of migrants, especially children. Over at the Hastings Center, Nancy Berlinger argues that while such outcry is important, we need to take action. After giving a brief overview of what has been happening, Berlinger says:

There is no ethical dilemma about policies of cruelty and neglect targeting children. The cruelty is the point. Once we recognize that a profound moral and ethical wrong is being perpetrated in our name, and will continue as long as it is politically expedient to dehumanize and scapegoat immigrants and as long as conditions in Central America – poverty, violence, unsustainable agriculture, weak or corrupt public systems – continue to push families through Mexico to the U.S., risking life in search of safety and the hope of a better future, how should our field respond between these moments of public outcry?


To answer this question, The Hastings Center held a national convening last fall, funded by a rapid-response grant from the Public Health Program of the Open Society Foundations, to explore feasible ways for health systems, as a sector of American society, to counter the harmful effects of federal policies and messages concerning immigrants. Participants included practitioners in health care, health law, immigrant health advocacy, and municipal government, reflecting the range of sectors (which also includes investigative journalism) involved in ongoing response to the current political environment in the U.S.


Through discussions during and following the convening, we identified a set of challenges that clinicians often grapple with in isolation as they try to serve a low-income patient population fearful of separation and detention and wary of encounters with authorities and government programs. Physicians for Human Rights, whose program staff participated in the convening, has recently reported on the broader health consequences of immigration enforcement for immigrants living in the militarized U.S.-Mexico border region. Even in immigrant-friendly cities far from the border, the “crisis” framing of immigration in politics and media impedes communication about the costs of health care for immigrants (relatively low) and about how heavily American society relies on immigrant labor and wages. The Hastings Center is  developing new projects informed by these insights, aimed at supporting collaboration between frontline practitioners and administrative “champions” in health systems serving the largely urbanized immigrant population.

Berlinger goes on to discuss additional ways of mobilizing health care for undocumented migrants and migrants waiting to hear about asylum proceedings, including “sanctuary hospitals” which do not allow Immigration and Customs Enforcement access to patients or their families. And of course, that bioethics educators can integrate these issues into curriculum. This IJFAB Blog editor, Alison Reiheld, agrees, and has already integrated care for migrants into spring and summer bioethics courses as a case of conscientious provision, and asked students to bring Lisa Harris’s excellent article on conscientious provision of abortion to bear on this distinct issue.

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IJFAB Blog readers will benefit from clicking through to read Berlinger’s entire short piece, and giving some thought to how they might move from outcry to action on migrant issues in their nations or on other issues that require more than just the slow churn of a scholarly journal article.

How does this affect our work with hospitals on policy?

Our teaching?

Our involvement with legal briefs or advice to legislatures/deliberative bodies on, say, zero tolerance polices in the US and Europe for those who aid/harbor migrants?

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