Health consequences of Flint water crisis grow
Editor

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 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
Editor

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. 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?
Editor

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 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.
Rory Kraft

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
Editor

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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Bioethics, Family, and Summer School: Part 6 – The Final Day and the “good enough” family
Ben Kenofer

Editor’s Note: This is part of a series of short blog posts about the bioethics summer school in Groningen, the Netherlands, which is focused on the role of family in the delivery and consumption of health care. Look for others in this series for about the author and the program itself.

We continued with faculty presentations and ensuing discussions for the first half of our final day at the summer school. For the second half of the day, however, my fellow students and I were divided into small groups of about five people, and our groups were given two questions to discuss amongst ourselves in preparation for a final class-wide discussion session.

For the first question, our group was asked to reflect upon what we have discussed this week (and perhaps what we have not discussed), and from that basis, to come up with some remaining challenges that those working in family ethics might need to resolve. The goal was for our group to arrive at some consensus that we could then share with the class. One of the points that we talked about within my group, and that we ultimately shared when all the students and faculty reconvened, centered on theorists further working out the relationship between family ethics and care ethics (some in the group were also interested in exploring the relationship between family ethics and virtue ethics). There were sometimes references made to care ethics or virtue ethics within the literature we read, but because several of the students came from non-philosophy backgrounds, most of my group members were not very familiar with these approaches. I was able to provide some brief overview, but when it came to care ethics, I too was unsure exactly how to conceptualize its relation to family ethics.

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Only 2 clinics remain in the US to perform late-pregnancy abortion
Editor

For some time now, there have only been 3 clinics in the United States that will perform late abortions (to read more about some late abortions, see this IJFAB blog entry on the topic).

One of these, the Germantown Clinic in Maryland, has permanently closed, bought out by an anti-abortion group.

Now, there are only 2 such clinics.

The twist, here, is that the Germantown Clinic physician Dr. Leroy Carhart reportedly plans to take the money and use it to open another clinic which will include a facility to train physicians in how to perform these procedures, long a plan Carhart has made to take strides to make late abortions more widely available.

 

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Informed Decision-making on Contraception Might Need These Charts Comparing Different Methods
Editor

Over in the New York Times, Gregor Aisch and Bill Marsh have an explainer with superb infographics on the comparative effectiveness of various contraceptive methods with respect to unplanned pregnancy. The graphs compare actual with ideal use, and have a slider so that you can see how they do at each year of use.  It’s pretty clear which methods are best over 10 years: IUDs, implants, and sterilization (not pictured, below). These, of course, have costs. So other methods that are less effective may still be better for some patients. Only the patient can decide that for themselves.

This composite image illustrates the kinds of comparison graphs you will find if you click through to the NY Times article. Unfortunately, the data do not appear to be available in a non-visual format.

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Police, providers, and patients: between a rock and a hard place? Not really
Alison Reiheld

The Salt Lake Tribune (from the US State of Utah) posted an article yesterday about a nurse who refused to let a police officer trained in phlebotomy take a blood sample from an unconscious patient. The nurse was arrested and removed from the hospital. This pertains most obviously to issues of patient consent and thus the ethical principle of autonomy (the right to make decisions for oneself concerning one’s own body), and to the 5th Amendment legal right not to incriminate oneself.

These images, taken from an officer’s body camera, show the detention and arrest of the nurse, Alex Wubbels, who refused to let officers take a blood sample from an unconscious patient for evidence in an investigation.

What duties do health care providers have to society, and specifically to law enforcement? And should the duties they have to patients always, or at least presumptively, have normative dominance over duties to third parties?

There is an established ethical consensus that providers can have duties to third parties rooted in the harm principle and the vulnerability principle: that it is permissable, for instance, to violate patient confidentiality in order to prevent predictable harm to a third party, and that this is strengthened–perhaps even moves from permissible to obligatory–when that third party is vulnerable or dependent in some way. We see this in the famous Tarasoff case and also in requirements that health care providers be mandatory reporters of suspected child abuse, elder abuse, or other forms of abuse.

But those conditions don’t seem to be met in the case of police seeking to collect blood samples as evidence without a warrant.  The nurse, Alex Wubbels, fell back on hospital policy and the law in stating that a warrant would be required in order for the office to be allowed to draw blood from the unconscious patient. At least on preliminary reflection, the kinds of established reasons that give providers ethical duties–not just legal ones–to cooperate with law enforcement against patient interests simply don’t seem to be in play here. Indeed, in the case of Alex Wubbels’ patient, the most vulnerable party here seems to be the patient rather than some at-risk third party.

Not performing procedures without the patient’s consent is, like confidentiality, a lynchpin of modern American medical ethics. It is rooted in respect for patients and their autonomy. And while there are many cases in which law enforcement has sought the assistance of providers in searching suspects’ bodies–including cavity searches such as vagina or rectum–providers are arguably within their legal rights to refuse without a warrant. What’s more, they are almost certainly morally obligated to refuse to participate in and perhaps even obstruct treatment of patients which violates core principles of medical ethics such as autonomy, at least when there is no obvious contravening principle in play as there is when it comes to confidentiality and the principles of harm and vulnerability. While it might appear that providers are between a rock and a hard place when it comes to patients and police, the ethics are clearer than they might at first seem.

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Bioethics, Family, and Summer School: Part 5 – should care be centered on the person or the family?
Ben Kenofer

Editor’s Note: This is part of a series of short blog posts about the bioethics summer school in Groningen, the Netherlands, which is focused on the role of family in the delivery and consumption of health care. Look for others in this series for about the author and the program itself.

An image of one of Groningen’s many canals in the evening light. The exterior lights on buildings and cars in the distance are visible in the dim natural light. In the foreground, the still surface of the canal reflects the buildings and the houseboats that are moored on its edges.

During today’s session, we had the opportunity to work with case studies to think through the differences between person-centered care (PCC) and family-centered care (FCC). FCC conceptualizes a person and their health care practitioner as co-designers of the care that person will receive. Rather than just acquiesce to or reject treatment plans that are explained to them by a health care provider, the individual participates in shared decision-making that thoroughly considers their life-situation, experience, preferences and values. FCC shares these goals, but instead conceives of the family as co-decision maker, co-designer of the care plan, and ultimately as patient for the health care practitioners. This is because FCC draws upon the idea from family ethics that an individual’s well-being and their familial well-being are intertwined. So the physician needs to be focused on the good of the family to which an individual with a specific health concern belongs, since that good cannot be cleanly separated from the good of the patient.

One of the interesting things about considering whether there should be a shift from PCC to FCC, through reference to specific case studies, was learning about differences between the expectations of patients and health care providers in different parts of the world. For example, one of my fellow grad students Leila mentioned how within Lebanon, health care providers already expect to be working with an individual’s family from the beginning of their contact with that individual, rather than viewing the family as an outside obstacle that one hopes won’t come up during the planning of treatment. This different perspective presents health care providers with certain challenges, such as when a patient with more than one spouse (and who belongs to more than one household) has multiple families whose desires clash. I doubt this would even be considered a legitimate dilemma for providing treatment, as something distinct from one specific instance of the general challenge “keep family from getting in the way”, for health practitioners that regard the family as being irrelevant to what they are doing with their treatment.

I’ve never been to an academic event before where I am the only student from the United States, and since several of my fellow grad students have lived in different countries at different points (one place growing up, another for grad school), I have found listening to their perspectives on these matters fascinating. Some of them, such as Leila, have even worked within health care settings. So rather than just hear someone explain how they’ve heard things are done in other countries, I have been able to hear more detailed testimonies from people who have actually participated in these different practices and worked in environments where these different expectations were prevalent.

Some of the global cadre of attendees at the summer school have coffee together and chat outside of class meetings. In the image, we see a woman with pale skin and long hair whose glasses are perched on her head, a man with pal skin and dark hair and beard wearing glasses, and a man with dark skin and hair. They sit together with cups of coffee on the table, each of which has a thin layer of foam on top.

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Bioethics, Family, and Summer School: Part 4 – Day 3… family as a verb
Ben Kenofer

Editor’s Note: This is part of a series of short blog posts about the bioethics summer school in Groningen, the Netherlands, which is focused on the role of family in the delivery and consumption of health care. Look for others in this series for about the author and the program itself.

Dr. Jackie Leach Scully, philosopher and bioethicist

Whereas yesterday’s blog post focused on small group interaction with my fellow grad students, today’s blog post builds around an idea that came from one of our class wide discussions – in particular, Dr. Jackie Scully’s discussion on “Doing Family”.

The basic idea with thinking about family as a kind of activity is that family is not just something that can be identified in virtue of its having some particular structure, but can be recognized when a group of people display certain actions that mark that group as family (both to themselves and to others). Although already an intriguing idea, one of the points that Dr. Scully made during her talk involved the notion of passing. When there is a lack of social recognition towards how particular families display themselves (e.g., non-nuclear families), such that their displays are not even recognized by others within a society as being displays of family, then certain non-traditional families can be faced with having to try to pass as a more traditional family in order to even be acknowledged as one. This leaves these families with a myriad of challenges that those families not regarded as conventional do not have to face.

The notion of familial passing is a something that really struck me. I have been familiar for a couple of years now with the idea of individuals passing in order to avoid discrimination, such as biracial people passing for white or LGBT individuals passing for heterosexual. Yet although I knew passing is a relational action (someone passes in the eyes of someone else), I had still always thought of passing as just something that the individual members from a social group undertake. It had not occurred to me before to think of social units, such as families, themselves as something that not only can pass, but can be compelled to in various circumstances.

This reflection on how my ideas about passing have expanded is a great example of what I have been enjoying about my time here during the summer school. At different points during my journey as philosophy student, there have been times where I’ve attended a lecture or seminars, and have been left with the thought that “this is an interesting intellectual puzzle, but I’m not sure how to relate this back to my own ideas, experiences or research”. This has not been my experience during the three days I’ve spent here. Whether it’s been because of a light bulb that clicked on because an idea made sense, or a new line of thinking that has been sparked by reflecting on why something didn’t settle right with me, these discussions haven’t just felt like intellectual detours, but have felt like they are helping to provide further orientation for the trajectory of my socio-political thought. It certainly helps to have such a collaborative (as opposed to competitive) and open-minded group of people to be working through these ideas with.

Four of the participants in the bioethics summer school on the family and medicine relax at a venue in Groningen.

Relaxing with bioethics summer school cohort does not rule out beer and sun.

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Bioethics, Family, and Summer School: Part 3 – Day 2… why DO families matter?
Ben Kenofer

Editor’s Note: This is part of a series of short blog posts about the bioethics summer school in Groningen, the Netherlands, which is focused on the role of family in the delivery and consumption of health care. Look for others in this series for about the author and the program itself.

This image shows a portion of the cover of the book “The Patient in the Family: An Ethics of Medicine and Families”, co-authored by Hilde Lindemann and Jamie Nelson. The main title is in large red type. In a small image within the center of the larger image, we see a woodcut of a man and a woman with a baby.

The graduate students divided into small groups to discuss questions related to Hilde Lindemann’s work on “Why Families Matter”, and the small group discussion has been my favorite activity within the summer school so far. My group of six found a little café near the university to have coffee and discuss our question, “Do families have intrinsic value?” Our group has been trying to get clearer on what family consists in, in order to see more transparently what kind of value it might have. One of the methods our group invoked to think through what family is has been to think about what family is not. We discussed how birth does not seem to be sufficient, since many people do not regard surrogates as family members. Genetics does not seem necessary, since one can enter into family through associations like marriage, and some people consider their closest friends to be part of their families. Living proximity does not seem to be necessary either, since family members can inhabit different households from the start of one’s life (like cousins) or can move away at various points. Our group even wondered whether species membership was necessary for family – this was a point that not everyone agrees on, since some people in our group considered their pets to be family (myself included), whereas other people couldn’t get that sentiment.

Something that has come out of this discussion is not just that people have different conceptions of families depending on cultural beliefs, personal experience, etc., but whether the term “family” is even really covering several variations of one kind of thing. One of our group members, Bryan, proposed that different cultures and people might have different enough conceptions that we are mistaken to think these are even permutations on one core idea. Because of how slippery the concept of family seems to be, we didn’t reach consensus on of our answer to the question on why families are valuable. Rather than feeling like a wasted effort, however, this has definitely felt like a gain on my part. Thinking through the idea with such an interesting group of people has made me much more appreciative of the nuance and complexities involved even within my own conception of what family is.

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