Tag: midwives

Bioethics Blogs

NIH Family Members Giving Back: Charlotte Phillips

Caption: Charlotte Phillips during a visit to a Missouri Mennonite community.
Credit: Richard Hillman

At 1 a.m., most people are fast asleep in their beds. But Charlotte Phillips sometimes finds herself up at that odd hour, waiting anxiously in a deserted Missouri parking lot far from her home. Phillips drives there to meet a contact for a very special delivery: a packet of cheek swabs and blood samples from a newborn Mennonite baby at risk of a life-threatening genetic condition called maple syrup urine disease (MSUD).

For more than two decades, Phillips, an NIH grantee at the University of Missouri, Columbia, has volunteered to ensure that the DNA in these swabs and samples is tested for MSUD within hours of a baby’s birth. If found to be positive for the condition, the baby can receive a needed special formula. Without it, the baby would suffer brain damage within days from its inability to break down amino acids in protein-rich foods, including breast milk and standard infant formula. Hurrying off at a moment’s notice isn’t always convenient, but Phillips, who is not Mennonite, feels a personal calling to do it. She wouldn’t want any babies to die.

MSUD is named for the sweet smell associated with the urine of people left untreated for the condition. The lifelong condition is exceedingly rare, affecting about 1 in 185,000 infants [1]. But, it’s relatively common among Old Order Mennonites, affecting about 1 in 380 infants. That’s because many Mennonites carry one copy of the mutated gene, meaning they won’t develop MSUD but can pass it on to their children if their spouse is also a carrier.

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.

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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

Chappell on Midwives and Regulation

Richard Yetter Chappell has drawn my attention to this – a blog post in which he bemoans the Nursing and Midwifery Council’s rules about indemnity insurance, and the effects that they’ll have on independent midwives.  (I’d never heard of independent midwives – but an IM – according to Independent Midwives UK – is “a fully qualified midwife who has chosen to work outside the NHS in a self-employed capacity”.)  In essence, what’s happened is that the NMC has ruled that the indemnity cover used by some IMs – around 80, nationwide, according to some reports – is inadequate; these 80 IMs (out of 41000!) are therefore barred from working.

I’ve got to admit that this seems like a bit of a storm in a teacup to me.  For sure, there may have been infelicities about the way that the NMC handled its decision.  That may well be unfortunate, but it may not be all that much to get excited about.  However, Chappell makes two particularly striking points.  The first is his opening claim, in which he refers to this as “a new low for harmful government over-regulation”.  Well, it’s not really government overregulation, is it?  It’s the NMC.  Governing bodies are not government.  And whether it’s overregulation at all is a moot point: we need more information about what the standard is by which we should assess any regulation.  That leads us to the second striking thing that Chappell says, to which I’ll return in a moment.  Whether it’s harmful is also a moot point.  I mean, it may be true – as he points out – that the decision will have an undesirable impact on the relationship between some women and their chosen midwife. 

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

In the Journals – January 2017 by Anna Zogas

Welcome to a new year of Somatosphere’s In the Journals section! Here are some of the articles available in January 2017. Enjoy!

Medical Anthropology

Chronic Subjunctivity, or, How Physicians Use Diabetes and Insomnia to Manage Futures in the United States
Matthew Wolf-Meyer & Celina Callahan-Kapoor

Prognostication has become central to medical practice, offering clinicians and patients views of particular futures enabled by biomedical expertise and technologies. Drawing on research on diabetes care and sleep medicine in the United States, in this article we suggest that subjectivity is increasingly modeled on medical understandings of chronic illness. These chronic conceptions of the self and society instill in individuals an anxiety about future health outcomes that, in turn, motivate practices oriented at self-care to avoid negative health outcomes and particular medical futures. At its most extreme, these anxieties of self-care trouble conceptions of self and social belonging, particularly in the future tense, leading patients and clinicians to consider intergenerational and public health based on the threats that individual patients pose for others.

Decoding the Type 2 Diabetes Epidemic in Rural India (open access)
Matthew Little, Sally Humphries, Kirit Patel & Cate Dewey

Type 2 diabetes mellitus is an escalating public health problem in India, associated with genetic susceptibility, dietary shift, and rapid lifestyle changes. Historically a disease of the urban elite, quantitative studies have recently confirmed rising prevalence rates among marginalized populations in rural India. To analyze the role of cultural and sociopolitical factors in diabetes onset and management, we employed in-depth interviews and focus groups within a rural community of Tamil Nadu.

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

Swedish midwife fights for her conscience rights

This week the Swedish Labour Court of Appeal heard the case of a midwife who was sacked because she refused to participate in abortions. Ellinor Grimmark has been refused employment at several hospitals in the Jönköping region because she has declared that abortion is against her conscience and her religious convictions. 

She sued and demanded €30,000 in damages. In 2015 a district court found that assisting with abortions was part of her job, that  her freedom of conscience had not been violated and that she should pay costs of  €96,000.

According to Scandinavian Human Rights Lawyers and the US-based Alliance Defending Freedom, which are jointly handing Ms Grimmark’s case, Article 9 of the European Convention on Human Rights, which is Swedish law since 1995, gives everyone the right to freedom of conscience. In a democratic society this is a right which may only be restricted by necessity. But, say her lawyers, no necessity exists: abortions form a very small part of her job, other midwives are available and there are precedents for accommodating Swedish conscientious objectors:

“Pluralism and dissent on ethical issues is an asset in healthcare, as well as in society in general, and strengthens democracy,” say her Swedish advocates. “A corresponding proportion of patients, also taxpayers, in Swedish society share Ellinor Grimmark’s ethical and/or religious beliefs.”

However, Mia Ahlberg, president of the Swedish Association of Midwives told the BBC that making an exception for Ms Grimmark would destroy the integrity of midwifery and violate women’s rights. The Swedish media is painting the participation of the ADF as a plot by the American pro-life movement to restrict abortion in the European Union.

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

In the Journals — September 2016, part II by Aaron Seaman

And, now, part two of September’s journal posting! (Part one is here.)

Medical Anthropology Quarterly

“I Hope I Get Movie-star Teeth”: Doing the Exceptional Normal in Orthodontic Practice for Young People

Anette Wickström

Orthodontics offer young people the chance to improve their bite and adjust their appearances. The most common reasons for orthodontic treatment concern general dentists’, parents’ or children’s dissatisfaction with the esthetics of the bite. My aim is to analyze how esthetic norms are used during three activities preceding possible treatment with fixed appliances. The evaluation indexes signal definitiveness and are the essential grounds for decision-making. In parallel, practitioners and patients refer to self-perceived satisfaction with appearances. Visualizations of divergences and the improved future bite become part of an interactive process that upholds what I conceptualize as “the exceptional normal.” Insights into this process contribute to a better understanding of how medical practices intended to measure and safeguard children’s and young people’s health at the same time mobilize patients to look and feel better. The article is based on an ethnographic study at two orthodontic clinics.

Huichol Migrant Laborers and Pesticides: Structural Violence and Cultural Confounders (open access)

Jennie Gamlin

Every year, around two thousand Huichol families migrate from their homelands in the highlands of northwestern Mexico to the coastal region of Nayarit State, where they are employed on small plantations to pick and thread tobacco leaves. During their four-month stay, they live, work, eat, and sleep in the open air next to the tobacco fields, exposing themselves to an unknown cocktail of pesticides all day, every day.

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

Special Issue! Private, the Public, and the Hybrid in Umbilical Cord Blood Banking by Aaron Seaman

“First, it critically examines the dichotomy between public and private cord blood banks, and shows that the mechanism and network of cord blood banks is far more complex than indicated by the dichotomy of the public and the private. …

“Second, there is an increased interest in the social, ethical and political aspects of cord blood banking as a location where scientific, economic, governmental and personal expectations converge. Cord blood banking attracts various actors with common, and competing, interests, including regulators, scientists, business people, medical staff, donors, patients and customers. Although academic publications have appeared on some of the contested values and discourses around UCB banking, such as waste, gift, hope, insurance and venture…, there is still little we understand about the collaborations, alliances and competition among these actors and stakeholders, as the processes involved in cord blood banking remain opaque. This special issue brings together the perspectives of midwives, managers in cord blood banks, parents, scientists and policymakers in different countries. Their standpoints highlight various perspectives on cord blood banks, as well as how a panoply of opinions and actions come about in their specific socio-cultural, economic and political context.”

As such, the articles’ abstract are below. Enjoy!

Hybrid practices in cord blood banking. Rethinking the commodification of human tissues in the bioeconomy

Christine Hauskeller and Lorenzo Beltrame

The STS and bioethical literature on umbilical cord blood (UCB) banking nowadays discusses the field as divided into opposite institutional arrangements, public versus private banking.

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

In the Journals – August 2016 by Anna Zogas

Here are some of the articles published in the journals in August 2016. This post includes the abstracts from a special issue of Anthropology & Medicine, “Medical Pluralism and Beyond.” Enjoy!

American Ethnologist

The postneoliberal fabulation of power: On statecraft, precarious infrastructures, and public mobilization in Brazil
João Biehl

In Brazil’s hybrid government of social protection and market expansion, there is under way a fabulation of power, which ultimately serves to “de-poor” people seeking care, working infrastructures, and justice while also shoring up state politics as usual. This process became evident through the failure of a collaborative research project that I coordinated on right-to-health litigation. In rethinking that failure as an experiment in public ethnography, I draw on core disagreements with public officials over the interpretation of our findings from a legal database. Analyzing these disagreements provides an entry point into the mechanisms of veridiction and falsification at work in Brazil, whose government sees itself as providing public goods beyond the minimum neoliberal state. Countering state mythology, public ethnography thus illuminates the improvised quality of postneoliberal democratic institutions and opens up new avenues for theorizing power and the political field.

Royal pharmaceuticals: Bioprospecting, rights, and traditional authority in South Africa
Christopher Morris

The translation of international biogenetic resource rights to a former apartheid homeland is fostering business partnerships between South African traditional leaders and multinational pharmaceutical companies. In the case of one contentious resource, these partnerships are entrenching, and in some instances expanding, apartheid-associated boundaries and configurations of power. The state and corporate task of producing communities amenable to biodiversity commercialization and conservation is entangled with segregationist laws and spatial planning.

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

1000 Risks and Birth-and-Death in Cape Town by Kathleen McDougall

“I was willing to die,” Terri told me, “I just didn’t want to have another caesarian.” She referred to her vaginal birth after three c-sections (a VBA3C), which took place at home, since no Cape Town hospital would allow her what is termed a trial of labour – an attempt at vaginal birth – for fear of uterine rupture. It is widely agreed that the risks for planned VBACs are far less than that of planned repeat c-sections (RCOG 2015; Curtin et al 2013). Yet, all the obstetricians that Terri consulted in this pregnancy and the last two (in both the public and private healthcare sectors) preferred planned c-section risks to the risk of uterine rupture. One doctor told her that waiting for spontaneous onset labour was like running blindfolded across a busy freeway. Terri came to disagree profoundly with the doctor’s risk assessment. Now, most medical caregivers agree that the risks are far higher for VBACs taking place at home, not because there is a greater risk of uterine rupture at home, but because in that extremely rare case it may take too long to reach an operating theater. However, Terri could not find a hospital that was willing to support her attempt at a VBA3C. In addition, at a previous attempt at a VBAC in a private hospital, Terri was only allowed to labour for seven hours before being told she must have a repeat c-section. This time, with her husband’s wholehearted support, she prepared carefully for home birth, where she would have more control.

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

Graphic Medicine and Medical Anthropology by Dana Walrath

Introduction

When I began my graphic memoir series, Aliceheimers, it focused just on life with my mother Alice before and during dementia. But the revelatory insight that she has retained, even during the late stages of this sickness, has led me to sometimes let the character “Alice” metamorphose into an odd sort of sage. Here, she and I explore the relationship between Medical Anthropology and Graphic Medicine. Alice’s deeply held beliefs from life before dementia combine with her mind opened by dementia, allowing me to imagine a quasi-academic conversation that we never could have had in real life.

(Visual enhancement text for each page located at the bottom of the post. All page images are linked to larger versions.)

 

A writer, artist and anthropologist, Dana Walrath likes to cross borders and disciplines with her work. After years of using stories to teach medical students at University of Vermont’s College of Medicine, she turned to writing her own. Her award winning verse novel, Like Water on Stone, was completed during the year she spent as a Fulbright Scholar in Armenia. Her recently released graphic memoir Aliceheimer’s has brought her throughout North America and Eurasia to speak about the role of comics in healing including talks at TEDx Battenkill and TEDx Yerevan. Her recent essays have appeared in Slate and Foreign Policy. You can visit her at danawalrath.com.

 

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Page 1

  • Panel 1 of 3.
    • Title: “Graphic Medicine and Medical Anthropology: An exogamous marriage or paraphyletic groups?”
    • Image: Two kinds of family trees: comics (Mickey Mouse ears) and medicine (medical text) combine to form graphic medicine; biological and cultural anthropology (represented by book spines with names of some anthropological sages like Boas, Kroeber, Mead Leakey, Levi-Strauss) combine to form “Medical Anthropology”.

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.