Tag: culture

Bioethics Blogs

Psychiatric Genetics in a Risk Society

by Nicole Martinez-Martin

Kong and colleagues raise substantive areas of ethical concern regarding the translation of psychiatric genetic research into clinical and public health contexts. They recognize that psychiatric genomic research itself does not support essentialist claims, but point out that, nonetheless, the translation of genetic research to these new contexts may reinforce essentialist views of mental illness. Underlying Kong and colleagues’ analysis is recognition of the ways in which certain epistemological orientations, embedded within culture and institutional practices, may shape the translation of genetic research.…

Source: bioethics.net, a blog maintained by the editorial staff of The American Journal of Bioethics.

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

Scales and the Emotional Underside of Fatphobia

Michael Orsini explains the pervasiveness of discrimination, fear, and hatred related to ‘fatness.’

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It’s convenient to dismiss the recent flap over the removal of scales at the Carleton University gym as yet another case of political correctness run amok.

Did Carleton Athletics simply cave in to pressure from overly sensitive gym patrons who were ‘triggered’ by the sight of a scale? While tempting, that would be the wrong question to ask in the wake of this controversy. Rather, what is it about weight itself that would unleash such a torrent of emotion and name-calling?

Conservative media commentators mocked the University for its decision, revealing the extent to which the conservative battle against political correctness is fueled by ugly views about fatness.

That is not to say that all liberals are fat-loving citizens. Far from it. Fatness arouses a range of complex moral emotions in all of us, from feelings of pity and sympathy to fear and disgust, regardless of our ideological leanings.

In a world in which we come to rash conclusions about people based upon their appearance, being fat or ‘obese’ is shorthand for being slovenly, lazy, and ‘out of control.’ As Nobel Prize winner Daniel Kahneman argues in his best-selling book, Thinking, Fast and Slow, we often make decisions based on visceral feelings, strongly felt emotions that typically serve as poor guides. For example, in discussing the palpable fear of shark attacks, Freeman Dyson notes that we pay more attention to sharks because they frighten us, even though “riptides occur more frequently and may be equally lethal.”

How does this matter here?

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 Semantics of Therapy, Part II

A previous blog post of “The Semantics of Therapy” posed three questions about the human genome being a “patient” to be treated. One reader found the post “provocative and disturbing” and called for further explanation and discussion of the questions posed. That will take some time and several postings.

The first of the questions to be considered is this: If the “patient” is a genome, to whom does the researcher answer?   An answer from recent history may shed some light on this important issue.

33 infertile couples underwent a novel procedure at New Jersey’s Saint Barnabas Medical Center during the years 1996-2001. Embryologist Jacques Cohen used cytoplasmic transfer–ooplasm from the oocytes of fertile women was transferred into the eggs of infertile women–in the hope of establishing pregnancies in the latter. The outcome was 13 pregnancies and 17 babies from the Saint Barnabas experience (see accounts here and here).

According to a 2014 BBC article, one resulting pregnancy, which ended in miscarriage, revealed a missing X chromosome in the fetus. The same anomaly was noted in another child: one of a set of twins from a different pregnancy. Later, one child showed evidence of developmental delay. In 2014, Cohen estimated that the worldwide experience of cytoplasmic transfer between oocytes had resulted in the births of 30-50 babies, although the FDA had effectively stopped the procedure in the U.S. in 2002.

What had the follow-up on the babies born through cytoplasmic transfer been in 2014?

Due to a lack of funding, Cohen says, it hasn’t been possible to find out about how any of the children like Alana who were born from cytoplasmic transfer are doing.

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

Horse-drawn miscarriage: a case study on culture, pregnancy, and overriding parental requests to limit treatments

Patient autonomy is a well-established principle in both U.S. law and Western medical ethics. When patients have decision making capacity, they decide to accept or decline medical interventions based on of their own goals and values. When medical decisions are made on behalf of children, the best interests standard replaces autonomy. Because children usually lack settled goals and values, the decision about medical care should be made in light of the best decision for the child. Within the context of early pregnancy, the mother’s autonomous preferences are legally recognized as sufficient to make decisions to continue or to terminate the pregnancy. Once the fetus reaches the stage of viability, however, things get a bit more complicated.

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Source: The Bioethics Program Blog, by Union Graduate College & The Icahn School of Medicine at Mount Sinai.

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

Horse-drawn miscarriage: a case study on culture, pregnancy, and overriding parental requests to limit treatments January…

Source: The Bioethics Program Blog, by Union Graduate College & The Icahn School of Medicine at Mount Sinai.

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

Creative Minds: Does Human Immunity Change with the Seasons?

Micaela Martinez

It’s an inescapable conclusion from the book of Ecclesiastes that’s become part of popular culture thanks to folk legends Pete Seeger and The Byrds: “To everything (turn, turn, turn), there is a season.” That’s certainly true of viral outbreaks, from the flu-causing influenza virus peaking each year in the winter to polio outbreaks often rising in the summer. What fascinates Micaela Martinez is, while those seasonal patterns of infection have been recognized for decades, nobody really knows why they occur.

Martinez, an infectious disease ecologist at Princeton University, Princeton, NJ, thinks colder weather conditions and the tendency for humans to stay together indoors in winter surely play a role. But she also thinks an important part of the answer might be found in a place most hadn’t thought to look: seasonal changes in the human immune system. Martinez recently received an NIH Director’s 2016 Early Independence Award to explore fluctuations in the body’s biological rhythms over the course of the year and their potential influence on our health.

Martinez has teamed with researchers at the University of Surrey, England, who specialize in the study of biological rhythms, including sleep. With the help of their state-of-the-art facility, Martinez will study 12 people during each of the four seasons. During each visit, study participants will spend three days in the lab under carefully controlled conditions. Using a specially-designed catheter, Martinez will collect blood samples each hour, even while participants are asleep. With those blood samples in hand, Martinez will look for telltale changes in hormone levels, gene expression, and immune activity that predictably follow with the seasons.

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 difficult way to eradicate a genetic mutation

The Journal of the American Medical Association (JAMA) has a section in each issue titled “A Piece of My Mind” in which one of the physician readers writes a personal essay. The February 28, 2017 issue includes an essay titled “Eradicating a Genetic Mutation” by Maryl Goldberg Sackheim, an OB/GYN physician, who gives a personal account of her choice to use IVF and PGD to give birth to a child who did not carry the BRCA gene which had resulted in her having a prophylactic bilateral mastectomy. She describes undergoing IVF and PGD as the most trying part of her journey, not because of any moral conflicts, but because of the difficulty of going through the process of IVF itself. She concludes by saying that in spite of the difficulty of the process she is glad that she went through it to be assured that her child and possible grandchildren would not be affected by the BRCA gene. While she admits that the use of PGD for adult-onset diseases is controversial, she appears to be advocating for its routine use in this type of situation and educating patients who have this type of genetic disorder about the availability of this technique.

Dr. Sackheim’s only mention of any moral concerns about the use of IVF and PGD was by stating that it is sometimes rebuked as “playing God” and that it is argued that “choosing an embryo with the ‘right’ genetic makeup is like choosing to abort a fetus based on sex.” She dismisses those concerns by saying that “approving opinions view PGD is the solution to stamp out a dangerous gene mutation.” She seems to be saying that in comparison to the noble goal of stamping out a dangerous gene mutation the theoretical moral concern about choosing which children we will allow to live based on the child’s characteristics is unimportant.

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

Using Inclusive Language Isn’t Enough

Celeste Orr and Erin Leigh Courtice respond to criticisms of the British Medical Associations’ guide on inclusive language which aims to ensure that trans, intersex, genderqueer, and non-binary people are not subjected to discriminatory language.

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Since January 2017, Hayden Cross has garnered a lot of media attention. He is the first publicly-known pregnant trans man in Britain. In response to the media attention, there has been considerable criticism of the 2016 British Medical Association’s “A guide to effective communication.” The guide recognizes that some trans men and intersex men may become pregnant and it calls for the use of more inclusive language. The guide recommends that medical professionals use the phrase “pregnant people” instead of “expectant mothers.”

While the guide was published in 2016, before Cross’ pregnancy, a connection between Cross and the guide persists. Many of the articles and people criticizing the guide assume or suggest that it was published since Cross’ pregnancy. In this way, Cross is being blamed for the apparently “Orwellian” instructions, which undoubtedly intensifies the cissexist violence being aimed at him.

According to Philip Davies, British Conservative MP, the guide is “completely ridiculous.” Laura Perrins, of The Conservative Woman, describes the recommendations as “anti-science, anti-women and anti-mother.” Similarly, Sarah Vine claims the guide is “an insult to mothers.”

These recent criticisms are deeply problematic. For example, Perrins’ claim that the guide is anti-science is not only ironic, but false. Her claim reproduces the scientifically unsubstantiated essentialist theory that bodies are innately sexed and gendered, as observable by various bodily characteristics and capabilities.

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

Lenore Manderson, Elizabeth Cartwright and Anita Hardon’s The Routledge Handbook of Medical Anthropology by Casey Golomski

The Routledge Handbook of Medical Anthropology

Edited by Lenore Manderson, Elizabeth Cartwright and Anita Hardon

Routledge, 2016, 393 pages.

 

This is not a run-of-the-mill medical anthropology reader. Thank Routledge, its editors, and contributors for it. As someone who regularly convenes intermediate-advanced courses in medical anthropology, I’m grateful for its readability, teachable qualities, and particular theoretical angles. I’m going to trace four areas where I think the new Routledge Handbook of Medical Anthropology is innovative among the current offerings of similar edited volumes on the market for our discipline.

 

Visual innovation :: contextualized photographic figures

Recently, there’s been hot and necessary discussion about the images used for anthropology book covers: Tunstall and Esperanza (2016) over at Savage Minds provide interesting practical guidelines for book cover image selection as a way to decolonize anthropology. Ethnographies of medicine, suffering, and war with nuanced photographic figures of belabored people arguably make these books more compelling and help them win awards (De Leòn with Wells 2015, Biehl with Eskerod 2007, 2013), and also raise ethical questions about the images we choose to give life to our writing. The Routledge Handbook contains 16 photographic figures, taken by both contributors and others selected from a global Internet-based call-for-submissions in 2015, each placed as a ‘prelude’ (xii) to its respective chapter. A thoughtful, roughly 150-175 word description by the photographer accompanies each figure, giving it fuller context beyond the usual one sentence caption.

I appreciate projects that aim to decolonize higher education, the academy and our respective discipline, and find Tunstall and Esperanza’s approach insightful.

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

PART II: MY LOVE AFFAIR WITH THE BRAIN Bioethics and Meaning Derived from Science

Catherine Ryan and Gary Weinberg’s documentary film MY LOVE AFFAIR WITH THE BRAIN shows Dr. Marian Cleeves Diamond, PhD is not only a theoretical scientist but also an applied one. The Nuremberg Code—the rules for research conduct arising from the Nuremberg trials—has ten points. The second of those ten is that: Experiments should be such as to yield fruitful results for the good of society, unprocurable by other methods or means of study, and not random and unnecessary in nature. Dr. Diamond’s scientific integrity at the work bench has yielded a change in how we view human capacity. 

Luna Productions film shows a field clinic on brain growth, Diamond’s project, Enrichment in Action. It uses findings of the doctor’s brain enrichment research to directly benefit impoverished, orphaned children. In Cambodia a group of children are provided with an environment fortified with supplementary vitamins, language skills, computer lessons, and promotion of the children’s wider social acceptance. She has been facilitating, watching and documenting those children’s growth over years. 

There are multiple other clinical applications to the insights of brain malleability derived from Marian Diamond’s work. In the not too distant past, medical students were routinely taught that only a tenth of the cerebral cortex (the heaviest part of the brain) was actively used. The implication was that if brain cells were lost that portion of the brain’s function was permanently diminished. The observation that nurture, as well as abuse, can alter brain function through structural change—is among neuroanatomist Marian Diamond’s major contributions to scientific history. That truth defines a choice to be made, by humanity, about how we can proceed, as individuals and a group.

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.