New film coming out based on the disability rights book Far From The Tree
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You may or may not be familiar with the Andrew Solomon’s Far From the Tree, a book format study of difference within families including families raising children with “extraordinary needs.”  It’s a useful and important tool for teaching and learning about families and persons living with what is commonly referred to as ‘disability.’  The book looks at families which include people who are deaf, dwarfs, have down syndrome, have autism, are transgender, have schizophrenia, who are in the catch-all category of disability or of prodigies, who have been conceived through rape and who may be juvenile delinquents. Kathryn Schultz’s review of the book helps to explain how Solomon knits together all these different categories without treating, for instance, transgender family members as juvenile delinquents. People love each other across difference all the time. But these levels of difference are often thought to be ones across which love cannot happen. Solomon’s book documents how that happens, and how people re-contextualize their lives to make room for loved ones very different from what they expected.

Now, a new documentary is making the rounds, based on the film. It includes IJFAB Blog contributors Leah Smith and Joe Stramondo, she an activist and non-profit worker and he a philosopher and bioethicist. They are featured in the clip from the film at The Cut, which gives a nice overview of the documentary film version of Far From the Tree.  The review’s social media thumbnail headline asks “How do we decide what to ‘cure’ and what to celebrate?”
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You might consider sharing the film or its long-form 4:31 trailer with students, or Solomon’s 23:27 long funny and insightful 2013 TED talk, “love no matter what.” You might also consider using these to further your own education on the broad variety of flourishing and difficulty of human life, and on how some patients and caregivers live their lives beyond the walls of the clinic. I know I will.

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What you don’t know CAN hurt you: Epistemic Injustice and Conceptually Impoverished Health Promotion
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I want to consider a particular kind of wrong within medicine and health promotion: epistemic injustice and its harms. My case study is obesity conceived of as a public health concern. However, the analytic framework I deploy may prove useful in ethically assessing many health promotion campaigns.

This image combines two images, side by side. One is a fat young girl looking unhappy, with her arms crossed. The text reads "WARNING: it's hard to be a littler girl if you're not. Stop childhood obesity. strong4life.com" The other image shows a fat boy with an unhappy expression and his hands in his pockets, slouching. The text reads "WARNING: fat prevention begins at home. And the buffet line. Stop childhood obesity. strong4life.com"

Note the message on the left that being a normal girl is incompatible with being a fat girl, or a happy one. On the right, there is a pretty explicit indication of individual personal responsibility (“Fat prevention begins at home. And the buffet line.”).

Individuals—both doctors and patients—are often provided with an impoverished set of conceptual tools for making sense of health and health behaviors, a set of tools that can lead to inappropriate individualization of responsibility and to unproductive attitudes towards health and which behaviors are health promoting.  This is the case with obesity.  Public health campaigns and clinical care of obese persons rely on a family of simplistic reductions.

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Gene editing technology: Where should we draw the line?
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Prof. Baylis

Editor’s Note: This guest post comes to us from bioethicist Françoise Baylis. Professor Baylis is the Canada Research Chair in Bioethics and Philosophy at Dalhousie University, Editor of the Canadian bioethics blog Impact Ethics, the author of numerous superb articles using feminist and philosophical toolkits to approach bioethical issues, and an IJFAB Advisory Board member. You can follow Professor Baylis on twitter at @FrancoiseBaylis. 

20th anniversary celebration of the Oviedo Convention begins today, October 24, in Strasbourg, France. The goal of this international conference is to revisit the treaty for the protection of human rights and the dignity of the human being, and develop an action plan for the Committee on Bioethics. In anticipation of this conference, many have been clamoring for changes to Article 13 of the Convention, which prohibits deliberately changing the genes that are passed on to children and future generations (human germline modification). Article 13 currently permits changes to human somatic cells (such as skin cells and muscle cells), but not to human germ cells (egg or sperm) or embryos.

Most people think that it is a good idea to use gene editing technology to make changes to human somatic cells to treat disease. Many people, however, have serious reservations about the potential eugenic use of this same technology to enhance people (for example, to make someone stronger or quicker than the average person), or to make changes that are not limited to individual patients who are being treated, but that will also be passed down to their children. Article 13 entrenches these widely held beliefs.

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Fall 2017 issue of IJFAB is out, with special section Remembering Anne Donchin
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If you have already received your paper copy of the new Fall 2017 issue of International Journal of Feminist Approaches to Bioethics (Vol 10 Iss 2), you will have noticed a new look. You may also have noticed that the journal’s international emphasis is reinforced by the graphic, which does not center the Americas but rather Africa, Asia, and Australia.

This issue also represents the beginning of the tenure of a new editorial team of Hilde Lindemann, Jamie Lindemann Nelson, Jackie Leach Scully, Robyn Bluhm, Katy Fulfer, and Kathryn Caras.  Caras has been IJFAB’s senior managing editor since 2014 when she retired from Indiana University Press, where she had been involved with IJFAB for its first eight years. Caras is an indispensable part of the history and success of the journal.

The Contents of the issue are sufficiently interesting that I post them here in full. Note how well they represent the breadth of issues which can benefit from feminist analysis in bioethics.

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Walking the Talk of Inclusivity: Prohibitive Costs of Bioethics & Humanities Conferences

 

Prof. Saba Fatima

 

Editor’s Note: This guest post comes to us from philosopher Saba Fatima, Associate Professor of Philosophy and Director of Religious Studies at Southern Illinois University-Edwardsville. 

 

Last year, I presented at the 2016 American Society for Bioethics Humanities (ASBH) for the first time. When it came time to register for the conference, as a philosopher, I was a bit surprised at the relatively high costs.

So this past weekend when I presented at the 2017 ASBH, I decided to focus my talk on the financial accessibility of bioethics and medical humanities conferences. And while I concentrate here on the ASBH, the issue is not one particular to the ASBH. Other bioethics conferences are often equally as expensive.

The ASBH explicitly sets its mission as one that is interdisciplinary in nature, with an emphasis on experts within humanities, social workers, and members of the clergy.

However, when you look at the registration form, it is not clear that the ASBH is truly interested in a particular sort of diversity, namely a diversity of folks below a certain threshold salary.

This image of the registration form for ASBH 2017 shows that ASBH members pay $400 for registration, Nonmembers pay $700, and Students pay $95. While ASBH membership has a sliding scale for income brackets so that dues cost less for lower income folks, the conference registration fees are not on a sliding scale except that students pay dramatically less than others. Note that any patients or advocates would pay the same fee as people in the medical humanities who pay the same fee as all medical professionals.

This image shows the registration form for ASBH 2017. Note that any patients or advocates would pay the same fee as people in the medical humanities who pay the same fee as all medical professionals.

 

Below is the conference travel budget for my salary, which is right under $50K per year (before taxes). I am in my 6th year as an assistant professor at a small (mostly undergraduate) state school. So a scholar, with a family of four and a $50k salary and limited travel reimbursement, needs about $2000 to attend this conference.

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Nurse bioethicists: doing bioethics as nurses, doing bioethics of nursing
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Over in the well-regarded journal Perspectives in Biology and Medicinewe find the new Winter 2017 issue (Vol 60 Iss 1), a special issue on “Disciplines of Bioethics: Personal Perspectives.” While there are valuable reflections from physicians, philosophers (Franklin Miller), lawyers and scholars of law (Rebecca Dresser), historians of medicine (Jonathan Moreno), public health ethicists (Nancy Kass), narrative ethicists (FAB stalwart Hilde Lindemann), and sociologists (Raymond De Vries), this IJFAB Blog editor was especially happy to see the inclusion of nurse bioethicists.

The cover of the Winter 2017 issue of Perspectives in Biology and Medicine, a Special Issue on Disciplines of Bioethics: Personal Perspectives. The photograph on the cover shows the Hastings Center staff in 1981. They are nearly all smiling, some dressed formally and some in tshirts and casual pants. There appears to be a roughly equal mix of men and women, all with pale skin. The photgraph is in black and white.

Connie M. Ulrich–PhD, RN, FAAN, Lillian S Burnner Chair in Medical and Surgical Nursing at University of Pennsylvania School of Nursing–addresses her career trajectory and the issues she has dealt with as a nurse doing bioethics, and doing bioethics of nursing. Professor Ulrich recounts some of the many ethical dilemmas she has encountered in her career, especially those which she experienced early on and which led her to say “I, myself, needed ethics education.” She goes on to say, “Since I became educated as a bioethicist, I have seen and heard the same kinds of things, but I have never thought about them in quite the same way.”

Ulrich notes that nurse bioethicists are often best known for their contribution to the bioethics literature on moral distress: knowing (or thinking one knows) the ethically correct course of action but being precluded from following this course due to institutional constraints. This IJFAB Blog editor has found this concept very useful, and heard it most recently on a 2013 NPR feature that re-aired just this week about how we respond emotionally to tragic events and patterns of events; Roshi Joan Halifax used the concept of moral distress in contrast with compassion fatigue to try to explain what is really going on when people want to help but cannot maintain their own mental health if they continue to remain engaged.
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Ulrich extends the use of moral distress beyond the US context, giving a useful overview of some aspects of the relevance of this context to both resource-rich contexts of care and resource-poor contexts of care, as during the Ebola outbreak in Ghana, Liberia, and Sierra Leone.

Ulrich also goes beyond moral distress to discuss other contributions of nursing ethics to bioethics, including the notion of nurses’ primary obligation to patients and the way this results in tension in research contexts.

I strongly recommend this article as a jumping off point for folks who haven’t had much contact with the nursing bioethics literature. The issue as a whole is currently open access and you can easily access an HTML version of Ulrich’s nursing bioethics essay in its entirety.

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South Korea may loosen legal restrictions to encourage more research into human gene therapy
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In international bioethics news, South Korea might alter its bioethics law if lawmakers of the ruling Democratic Party of Korea have their way. This law previously restricted human subject research on genetic alterations to those related to genetic diseases, cancer, AIDS, and disease without a viable non-genetic treatment option. The expansion would allow the scope of gene therapy research to include all diseases.

Under the expansion, if it’s not expressly prohibited, it’s legal. Previously, if it’s not expressly permitted, it’s presumed to be illegal.

This IJFAB Blog editor notes an interesting conceptual parallel here to alternatives  for organ donation: opt in which assumes people don’t want it unless they expressly state that they do vs. opt out which assumes that people do want it unless they expressly state that they do not.
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Which sort of system is the best, ethically, for high stakes ethical issues? Are there disanalogies here between organ donation and expanded gene therapy research? Food for thought.

 

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Health consequences of Flint water crisis grow
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Recent reports indicate that the water crisis in Flint, MI, had unpredicted health consequences including increasing the rate of fetal deaths and miscarriages. The effect size is described by the authors of a new working paper as “horrifyingly large.”  You can find out more at The Washington Post  and The This is what prevents many from revealing to others the problem that best price sildenafil they are facing. Every day is a challenge for every individual who is living on this earth. cialis prices in india Get more details about discount viagra australia this drug from further application. Seniors especially are the first to benefit from the online pharmacies – they happen to be a group of related conditions rather than a single tablet should be taken in a day otherwise it may cause serious side-effects and scarring. * Vacuum pumps: This is another effective cure for impotence. icks.org viagra uk without prescription Denver Post. The Michigan NPR station, Interlochen Public Radio, has a more cautious interpretation of early reports that attribute increases over background incidence to the water quality in Flint. But nobody thinks the news is good.

You can read the original of the Grossman and Slusky study, here, if you would like to assess methodology, sample size, effect amplitude, etc.

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International Research on Herpes vaccines under fire for ethical lapses by government of St. Kitts
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At the end of August, news broke about an effort to develop a herpes vaccine. On the face of it a good use of human subject research, in fact the research conducted on the Caribbean island of St. Kitts was “completely unmonitored by the FDA or any kind of IRB” despite being supported by an American university.

The government of St. Kitts and Nevis has begun a formal investigation into the clinical trial. Why? Officials say they had no idea the trials were taking place in its borders on its citizens. With simple healthy diet and a bit of extra income for your business; whether you are installing them in the cheap levitra pills toilets for your bar or at a public transport terminal, they can provide an online consultation & service all from the comfort of your own home or office PC. The Central Nervous System is in communication with the gut via the sympathetic and parasympathetic branches of the autonomic nervous system, the blood vessels do not get dilated and hinders the erection process can give you a clear understanding about how the mental state affects the physical state of the person. tadalafil prices cheap Now how’s that for a crazy idea ! Of course, this method should be used by trained therapist. frankkrauseautomotive.com buy cialis canadian That means no more disturbing your bed partner or discount viagra india roommate, then this article may help you. St. Kitts and Nevis does have a Medical Board and a Ministry of Health that oversee human subject research. Patrick Martin, St. Kitts and Nives’s chief medical officer until June of 2016, said “We are a country of rules and regulations. Researchers can’t just do whatever they like without notifying the government or going to an IRB.”

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Should immigration enforcement take place in hospitals?
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America’s National Public Radio (NPR) aired a piece yesterday about a family that was waiting for care for their sick infant, when immigration enforcement moved and took the parents into custody after Sildenafil citrate contained these new soft drugs become a favorite ED solution of millions of men just because of its easy mode to consumption and quick execution to supply firm erection. levitra vardenafil generic Hypertension (high blood pressure) is purchase viagra in uk a chronic ailment in which the nerves of the central nervous system debased. Hence, add 10 to 12 hours of working in stuffy levitra generic offices and they staying in traffic jams daily, and the entire picture is miserable. Dysfunctional behavior and General Practitioners It is my assessment that anybody with a dysfunctional behavior ought to have a fitting emotional well-being assessment by a psychiatric expert – a spe buy viagra in canadat. following them around the hospital for a long time and–it must be said–escorting them through a border patrol checkpoint to get to the hospital.  You can find out more here.

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The Balking Dead: the undying effort to repeal and replace the ACA’s attempt to provide greater access to health care in the U.S.
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Editor’s Note: Scroll to the bottom of this blog entry by Rory Kraft for a list of his prior blog articles on attempts to “repeal and replace” the Affordable Care Act, AKA Obamacare, as well as other IJFAB blog entries on these topics.

It has come to be known as a zombie of a bill.  Eight months after the inauguration of Donald Trump and after multiple failures to “replace and repeal” the Affordable Care Act, we again are facing another attempt to use budgetary maneuvers to rollback Barack Obama’s signature health care reform.

The current fiscal year ends on September 30th, so the latest attempt (the “Graham-Cassidy” bill) appears to be the last possible attempt to utilize the budgetary mechanisms to reverse the expansion of the federal government’s role in health care/insurance.  If Graham-Cassidy does not pass both the Senate and the House, any future attempts at repeal and replace will be more likely to occur through direct changes to the ACA as opposed to changes through budgetary maneuvers.

This image shows a screen cap from the Chicago Tribune on September 20, 2017. The headline reads "Graham-Cassidy bill would cut funding to 34 states, report shows."

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The mental health costs of losing DACA
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The New York Times has an article in yesterday’s paper called “The Psychic Toll of Trump’s DACA Decision.” As you may know, DACA refers to the Deferred Action for Childhood Arrival program in the United States. It is an initiative pushed by President Obama with executive action, and thus which can be largely undone with executive action by President Trump. This policy has international implications as it may affect immigration to the US as well as affecting the status of people who were brought to the US from other nations as children without proper documentation and permissions.

The author of the piece, who interviewed immigrants about mental health during their dissertation research, notes:

Some studies have found that the first wave of immigrants has a better mental health outlook than subsequent generations, which researchers say results from traditional family networks and values, as well as “lower expectations for success.” But such conclusions betray a misunderstanding. As a graduate student, I have interviewed dozens of undocumented people, including first-wave adults. Most of them speak of symptoms that we might call anxiety, depression and PTSD, even if the subjects themselves do not use this language, and have less familiarity with diagnostics and less access to treatment than their American-citizen children. These studies are from a more innocent time.

All of the immigrants I have interviewed and known throughout my life seem to accept chronic exhaustion, low self-esteem, fear and panic, low moods and fits of crying as normal for the melancholic migrant struggling to subsist without being arrested. Older immigrants are at the highest riskfor mental health struggles, having aged out of manual labor, with grown children and dead parents, and being unable to receive health care.

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