Tag: ovarian cancer

Bioethics Blogs

Special Issues: Psy Sciences and Healthism by Anna Zogas

In advance of our regular monthly journal round-up, here are two special issues to check out! First, the brand new June 2016 issue of East Asian Science, Technology and Society is titled Transnational Psy Sciences in East and Southeast Asia. Next, a special double issue of Eä – Journal of Medical Humanities & Social Studies of Science and Technology (open access) is titled Healthism & Self-Care: Reconfiguring Body & Life through Science & Technology. Enjoy!

East Asian Science, Technology and Society

Transnational Psy Sciences in East and Southeast Asia

From the 1970s onward, the psy sciences were witness to blustering confrontations from a New Age movement heavily informed by Asian philosophy. Nowadays, yoga practices and mindfulness training have been integrated into mainstream psychotherapy. Nevertheless, such trends toward East-West admixing are in fact not at all new. Through four case studies, this special issue provides empirical data complementing the abundance of new scholarship on the history of psy sciences in East and Southeast Asia.

Making and Mapping Psy Sciences in East and Southeast Asia (open access)
Harry Yi-Jui WuWen-Ji Wang

The rich history of psy disciplines or psy sciences (psychology, psychiatry, psychotherapy, psychoanalysis) in modern society has been subject to different and sometimes conflicting interpretations. Major events, theories, and figures have been recorded and the meaning of their contributions explored to illustrate the ways in which various forms of psychological knowledge become important sources of self-understanding and self-actualization. Insights into the social and cultural history of psy sciences enable us to understand the interconnection between forms of knowledge and the social order to which they relate (Eghigian et al.

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 Collaborations: The Making of “Lissa (Still Time):  a graphic medical ethnography of friendship, loss, and revolution” by Sherine Hamdy

Is there a widely accessible yet conceptually rigorous way to convey anthropological insights into the lived complexities and bioethical dilemmas that attend managing chronic illness in two vastly different contexts: the contemporary Arab world, and the United States? As it turns out, there is: comics. At the time we began to explore this question, we had both been excited by the pedagogical potentials of this genre in our medical anthropological teaching (Hamdy 2014, Nye 2015). Like other scholars working in the growing field of what Ian Williams has termed “graphic medicine,” we found that the combination of text and image in graphic memoirs such as Hyperbole and a Half or Mom’s Cancer can powerfully convey the visceral, temporal, and social dimensions of illness, while the levity of the genre makes it easier to engage with difficult topics such as suicidal depression or cancer. We began to consider that the graphic form might also make it possible to succinctly and effectively visualize medical anthropological concepts such as “structural violence,” “biotechnical embrace,” or “political etiologies.”

Motivated by the conceptual and pedagogical potentials of comics, we began the process of crafting a collaborative narrative-based graphic adaptation of our original field research (process illustrated here by Hamdy’s daughter in fig. 1). This has led to a richly collaborative multi-dimensional project developed with the guidance of award-winning cartoonist and editor Paul Karasik and illustrated by Rhode Island School of Design students Sarula Bao and Caroline Brewer. We are thrilled to announce that the resulting project, Lissa (Still Time): a graphic medical ethnography of friendship, loss, and revolution, is now forthcoming with University of Toronto Press’s ethnoGRAPHIC series edited by Anne Brackenbury.

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

How Craig Venter Is Fighting Ageing with Genome Sequencing

May 5, 2016

(Wired UK) – Eight years ago, Venter’s genome couldn’t even be used to tell you his eye colour. Yet modelling appearance is merely a visual demonstration, not the end goal, of HLi’s big-data genomics. The aim is to predict your future. To explain why some people’s cholesterol accumulates in their arteries to ultimately fatal levels, and others’ does not. To identify which women are likely to develop breast or ovarian cancer in later life. And to understand why some people develop Alzheimer’s and some continue to live a cognitively rich life at 90.

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 – April Part II by Michelle Pentecost

Another set of great papers from the journals in April. Enjoy!

 

 Social Science & Medicine

‘I knew before I was told’: Breaches, cues and clues in the diagnostic assemblage

 Louise Locock, Sarah Nettleton, Susan Kirkpatrick, Sara Ryan and Sue Ziebland

Diagnosis can be both a ‘diagnostic moment’, but also a process over time. This paper uses secondary analysis of narrative interviews on ovarian cancer, antenatal screening and motor neurone disease to explore how people relate assembling procedural, spatial and interactional evidence before the formal diagnostic moment. We offer the idea of a diagnostic assemblage to capture the ways in which individuals connect to and re-order signs and events that come to be associated with their bodies. Building on the empirical work of Poole and Lyne (2000) in the field of breast cancer diagnosis, we identify how patients describe being alerted to their diagnosis, either through ‘clues’ they report picking up (often inadvertently) or through ‘cues’, perceived as a more intentional prompt given by a health professional, or an organisational process. For patients, these clues frequently represent a breach in the expected order of their encounter with healthcare. Even seemingly mundane episodes or behaviours take on meanings which health professionals may not themselves anticipate. Our findings speak to an emergent body of work demonstrating that experiences of formal healthcare during the lead-up to diagnosis shape patients’ expectations, degree of trust in professionals, and even health outcomes.

 

Socio-economic divergence in public opinions about preventive obesity regulations: Is the purpose to ‘make some things cheaper, more affordable’ or to ‘help them get over their own ignorance’?

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

CRISPR dispute raises bigger patent issues that we’re not talking about

A patent has far-reaching implications for future research. ReubenGBrewer, CC BY-SA

The worlds of science, technology and patent law eagerly await the U.S. government’s decision on who deserves patents on what many have referred to as the biotechnology invention of the century: the CRISPR/Cas9 gene-editing technique.

Scientists hail CRISPR/Cas9 as more accurate and efficient than other, now-traditional genetic engineering methods. As a result, CRISPR has generated worldwide debate about how it could accelerate the manipulation of plants, animals and even human beings at the molecular level. That some DNA modifications can be passed on to future generations raises particular concern.

But the patent dispute, focusing on whether scientists at the Broad Institute of MIT and Harvard or those at University of California, Berkeley invented the technology, seems far from these ethical concerns. Each institution asserts that its scientists are the rightful inventors – and therefore the owners of the CRISPR/Cas9 patents. As proof, the scientists are submitting their published articles, laboratory notebooks and affidavits to the US Patent and Trademark Office, which will make a decision in the next few months.

This decision will influence whose name will go down in the history books, and perhaps also who will receive a Nobel Prize. And it will determine which institution will make millions by licensing use of the patented invention to researchers at other universities and companies.

But amid all the breathless anticipation, we’ve been ignoring two important lessons from the CRISPR/Cas9 patent dispute: patent systems no longer fit the realities of how science works, and patents give their owners significant control over the fate and shape of technologies.

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

Can Talc Cause Cancer?

Can Talc Cause Cancer?

March 2, 2016

(The Scientist) – Last week, jurors in Missouri concluded that Johnson & Johnson bore some responsibility in the death of Jackie Fox, who died of ovarian cancer. Fox’s family was awarded $72 million in a case against the pharmaceutical behemoth because, the jurors said, Johnson & Johnson failed to disclose that its talc-based feminine hygiene powder carried an ovarian-cancer risk.

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

AI and the Rise of Babybots: Book Review of Louisa Hall’s Speak


By Katie Strong, PhD

“Why should I be punished for the direction of our planet’s spin? With or without my intervention, we were headed towards robots,” writes Stephen Chinn, a main character in the novel Speak by Louisa Hall. Stephen has been imprisoned for his creation of robots deemed illegally lifelike, and in a brief moment of recrimination when writing his memoir from prison, he continues, “You blame me for the fact that your daughters found their mechanical dolls more human than you, but is it my fault, for making a doll too human? Or your fault, for being too mechanical?” 

The dolls that resemble humans are referred to as “babybots,” robots with minds that deviate only 10% from human thought and have the ability to process sensory information. Speak tells the story of how babybots come into being and then describes the aftermath once they have been deemed harmful and removed from society. The book moves between character’s stories taking place in four different time periods, from the 16th century to 2040, and the plot is told through letters, court transcripts, and diary selections from five main characters. Through these various first-person views, pieces of the story behind babybots and the rise of artificial intelligence are made clear.

Around the same time that Stephen toils in prison writing his memoir, a young girl named Gaby is slowly losing her ability to speak and move following the mandated removal of her babybot. An outbreak, characterized by stuttering and physical rigidity, has begun among children whose babybots have been ripped away.

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 randomness of suffering and the love of God

Those who read my post at Christmas know that I have been thinking about suffering. Gilbert Meilaender in his book, Bioethics: A Primer for Christians, makes the point that Christians have available an understanding of suffering that is different than that of much of our society and that difference causes us to see a number of bioethical issues differently. When those of us who care for the sick are caring for those who are suffering our Christian faith can provide resources to help people find comfort and peace in the midst of suffering. However, we need to be careful because some of the ways we can respond to suffering may not be true to the truth of scripture and the reality of our world.

Two days ago I had something happen that made me think about this. I was driving from my morning job at Taylor University to the medical office where I work in the afternoons. My truck spun out of control on a patch of ice and off the road into a ditch where it flipped over and landed upside down. As I came to a stop hanging from my seat belt I realized that I was alive and unhurt, at least until I released the seat belt and landed on my head. In the end all I had were a few scratches and was able to crawl out of the cab and walk away. I felt very thankful to be alive. Many who have heard about the accident have responded by expressing thanks that God was watching over me and protected me.

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

F.D.A. Attention to Inaccurate Lab Tests Defers Hopes of

Generally the stock of research hospitals, laboratory developed tests (LDTs) were traditionally considered relatively benign and straightforward, tending not to require premarket review in the U.S. by the F.D.A. However, with the advent of genetic testing and private biotech company research, LDTs are now being used to diagnose common and serious diseases such as heart disease and cancer—highlighting the need for regulatory oversight to manage the diagnostic consequences of unvalidated testing. Over the last year, the F.D.A has been working towards new guidance of LDTs while seeking comments from the public. On November 16, the administration released a report of 20 case studies depicting the negative public health impact caused by LDTs that don’t perform as promised.

Robert Pear covered the issue for The New York Times, remarking that “Inaccurate and unreliable medical tests are prompting abortions, promoting unnecessary surgeries, putting tens of thousands of people on unneeded drugs and raising medical costs.” These are non-trivial findings. Beyond the personal harm caused by these mistakes, the costs are impressive. For example, an inaccurate genetic biomarker test for autism that was given to 2,027 children had an estimated social cost of $66.1 million, far outweighing the profits provided to the company.

In addition to these immediate individual and social harms, there is also a looming existential threat to the healthcare and research communities. These tests are in the limelight largely because they form the backbone of “precision medicine,” an effort to which the current Administration is now committed. The promise of precision medicine rests in knowledge: if we can test and sequence and analyze, then we will know; and if we know, then we may be able to conquer.

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

Bad Surgeons and Good Faith

This is a bit of a strange post, not least because it involves citing sources – a blog post, and a whole blog -that have since been taken down from the net, for reasons that will become clear.  It’s also going to involve a pair of fairly hefty quotations, largely because it’s the absence of a source that motivates this post – which means I can’t simply tell you to follow the links.  It has to do with an apparent case of a surgeon deliberately causing a serious injury to a patient in the name of teaching, and with deceptions, and with apologies for those deceptions.

It’s also a very long post, even by my prolix standards.

OK: so, as quoted by Orac on his Respectful Insolence blog, here’s the case that gets the story going.  It was originally recounted by someone calling themselves “Hope Amantine”, and was cross-posted atKevinMD.com, which bills itself as “social media’s leading physician voice”, is written by someone called Kevin Pho, and is a part a site called MedPage Today.  This means that Orac’s version is at least third-hand; but I can’t do better than that, for reasons that will become clear.  That’s a pain, but I’m going to have to take things on good faith – which, given what comes later, is perhaps asking for trouble.  Either way, here’s the story:

So here I was, handling the plane (the layer, or space) around the IVC [inferior vena cava] with care to avoid ripping it. It seemed like the intelligent thing to do.

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.