==
Thursday, January 31, 2019
Epidemiological Research
In this chapter, we come upon the subject of the ethics of epidemiological research. As stated in the book, when it comes to epidemiological research ethics, there are is a major dilemma of if the rights of privacy and confidentiality of an individual must be waived in order to create a major social benefit to society. When it comes to the betterment of society in the form of preventing, curing or eradicating diseases, is it ethical to waive the rights of an individual? I believe that when it comes to matters such as these, the need of the many outweighs the right for privacy of the individual, especially if that individual has no way of preserving his/her own right as in the case that he/she is deceased. Another question that we must consider, as proposed by Campbell, is what would be the correct ethical way of going about using data gathered from these individuals? Should we just blindly put trust into the researchers to not misuse this data? Or should we use a "trusted third party" to relay any necessary information? If we decided to trust the researchers themselves, they could be monitored in a way that they cannot misuse the data and decide for themselves what is relevant and what is not needed. However, if we use a third party, how would they go about deciding what data is relevant to the research when they are not participating in the research themselves? I personally believe we should trust the researchers to decide upon the data they need and conduct the research themselves, albeit with heavy monitoring so the data could be of benefit to society as intended and not misused.
A.I. Could Worsen Health Disparities
In a health system riddled with inequity, we risk making dangerous biases automated and invisible.
By Dhruv Khullar
Dr. Khullar is an assistant professor of health care policy and research.
Artificial intelligence is beginning to meet (and sometimes exceed) assessments by doctors in various clinical situations. A.I. can now diagnose skin cancer like dermatologists, seizures like neurologists, and diabetic retinopathy like ophthalmologists. Algorithms are being developed to predict which patients will get diarrhea or end up in the ICU, and the FDA recently approved the first machine learning algorithm to measure how much blood flows through the heart — a tedious, time-consuming calculation traditionally done by cardiologists.
It’s enough to make doctors like myself wonder why we spent a decade in medical training learning the art of diagnosis and treatment.
There are many questions about whether A.I. actually works in medicine, and where it works: can it pick up pneumonia, detect cancer, predict death? But those questions focus on the technical, not the ethical. And in a health system riddled with inequity, we have to ask: Could the use of A.I. in medicine worsen health disparities?
There are at least three reasons to believe it might.
The first is a training problem. A.I. must learn to diagnose disease on large data sets, and if that data doesn’t include enough patients from a particular background, it won’t be as reliable for them. Evidence from other fields suggests this isn’t just a theoretical concern. A recent study found that some facial recognition programs incorrectly classify less than 1 percent of light-skinned men but more than one-third of dark-skinned women. What happens when we rely on such algorithms to diagnose melanoma on light versus dark skin?
(continues)
...humans, not machines, are still responsible for caring for patients. It is our duty to ensure that we’re using AI as another tool at our disposal — not the other way around.
==
Health news
Wednesday, January 30, 2019
"Right-To-Try"
Individuals who have a terminal diagnosis and no other
options are left with sense of hopelessness. There are no more viable options…
well, that are fully FDA approved. In 2018, the “right-to-try” bill, backed by Donald
Trump, was passed, even though many states had already implemented a similar bill
in years prior. The “right-to-try” allows terminally ill patients to try
experimental drugs that have not fully been approved by the FDA as a last
attempt at a better health outcome. Not just anyone can be a candidate for “right-to-try”
but must meet the guidelines set forth by the bill.
Should terminally ill patients be allowed to use drugs that
have an unknown result? What if the outcome of taking the medicines leads to a
regretful end? Many feel that if we choose to do something to ourselves,
whether it helps or harms, it is our own right. If someone chooses to smoke,
health professionals, friends and family often suggest that they stop because of
the health risk. You might get lung cancer! You might get COPD! Ultimately, the
choice is theirs because smoking is not against the law and they are adults who
choose their own way.
What about assisted euthanasia? The general sentiment of our
class discussions have been supportive of a terminally ill patient choosing to their
death in a pain-free way in comfort and dignity. Does taking an experimental
drug with unknown consequences fall under the same right to our own body and
life as we please? What if it doesn’t lead to a pain-free, dignified outcome?
Maybe, the right to do as we please with our own will always stand true. Maybe,
our function as advocates of ethics, family members and friends is to respond
to the use of experimental drugs with unknown consequences in the same way we
would respond to a family member or friend who partakes in a health hazard like
smoking. We can be the pessimistic voice of reason saying, “Don’t do it. You
don’t know the outcome. You might get COPD!.”
Article on “Right-To-Try”:
Criterion for candidates:
Tuesday, January 29, 2019
Midterm reports
Indicate the topic & text you want to work on. Reports consist of a 500-word blog post, 15-minute presentation (in any preferred format) plus discussion (be sure to give us at least a couple of discussion questions) and a quiz over your presentation (and over any material you'd like to assign for us to read/watch/hear in advance). Be relevant, interesting, and provocative. Have fun.
Put a "V" next to your name if you volunteer (for a bonus run) to go first on Feb. 14.
1. Lilly Alegria: Concerning the eugenics argument for IQ and the weight of an IQ score.
2. Crystal Benton: Regarding the process of passing.
3. Emma Long children and cochlear implants. I will be using the text "Cochlear implants in children : ethics and choices".
4. Elizabeth Hodges. Patient Care: Death and Life in the Emergency Room. Implications and solutions for the drain substance abuse has on healthcare resources.
5. Brandon Alston Part VIII Selecting Traits, Selecting Children Beyond Bioethics
6. Sean Winsett: The Case Against Perfection: Ethics in the Age of Genetic Engineering. Epilogue-Embryo Ethics: The Stem Cell Debate.
7. Josiah Gibbs: Nature of Suffering; and the Goals of Medicine. Topic: Treatment and the Practitioner-Patient relationship.
8. Kevin Burge: Part III: "Emerging Biotechnologies, Extreme Ideologies: The Recent Past and Near Future", from Beyond Bioethics
9. Chris Julsgard: Being Mortal: Medicine and what matters in the end. Chapter: Hard Conversations
10. Nathaniel Deel: Hot Lights, Cold Steel by Michael J. Collins, MD.
Doctors of literature
It’s the birthday of the man considered “the master of the modern short story” and a brilliant playwright, a man who said: “Medicine is my lawful wife, and literature is my mistress. When I get fed up with one, I spend the night with the other. Though it is irregular, it is less boring this way, and besides, neither of them loses anything through my infidelity.” Anton Chekhov (books by this author) was born in Taganrog, a seaside city in southern Russia (1860).
His father borrowed too much money trying to build a big new house, and his grocery store went out of business, and he went bankrupt. In order not to be thrown in debtor’s prison, the family fled to Moscow — everyone in the family, that is, except Anton Chekhov, who was left behind to finish his last three years of high school and to pawn whatever family possessions remained. He worked as a private tutor; he caught little singing birds and sold them as pets, and he wrote stories for newspapers. He sent all the money he made on to his family in Moscow. He described his teenage years as a “never-ending toothache.”
He finished up high school, got into Moscow University’s medical school and paid his own way, and at the same time continued to support his family by writing funny stories for Russian newspapers and magazines. He wrote under pseudonyms like “Antosha Chekhonte” and “Man without a Spleen.” He once told a friend that “medicine takes itself seriously; the game of literature requires nicknames.” He finished medical school, passed all of his doctor exams, and started to treat patients, mostly for free. The same year that he had officially become a doctor, he started coughing up blood. He’d contracted tuberculosis, and it would eventually kill him when he was in his 40s.
His stories, as well as the popular productions of his plays Uncle Vanya (1899), The Three Sisters (1901), and The Cherry Orchard (1904), made Chekhov famous throughout Russia. He acquired a reputation as “Russia’s most elusive literary bachelor,” preferring lovers and prostitutes to a committed monogamous relationship. He once wrote to one of his supporters: “By all means I will be married if you wish it. But on these conditions: Everything must be as it has been hitherto — that is, she must live in Moscow while I live in the country, and I will come and see her. … Give me a wife who, like the moon, won’t appear in my sky every day.”
By some accounts, Chekhov considered himself a doctor foremost and a writer by hobby. There are a great number of medical doctors who also wrote fiction and poetry, among them 19th-century American poet Oliver Wendell Holmes, Sherlock Holmes’ creator Sir Arthur Conan Doyle, and Robert Seymour Bridges, who is the only physician to have been Poet Laureate of England. American writer Walker Percy was a medical doctor, and Michael Crichton completed medical school before he became a full-time writer. Doctor Arturo Vivante wrote more than 70 stories for The New Yorkermagazine. Mystery writer Robin Cook is a physician and author of the best-selling thrillers Coma (1977) and Mutation (1989). Dr. Abraham Verghese took a break from hospitals to attend the Iowa Writers’ Workshop in the early 1990s; he returned to medicine and now teaches and practices at Stanford, where he has a secret unmarked writing office on campus.
And perhaps the most famous doctor in literature is William Carlos Williams, M.D., of Rutherford, New Jersey.
Quiz Jan 31
By EMILY KELLY FEB. 2, 2018. Continue reading the main story
&
 | The New York Times (@nytimes) |
|
N.F.L. Great Ken Stabler Had Brain Disease C.T.E. nyti.ms/1R1vYYw
| |
& see Against Football: One Fan's Reluctant Manifesto
==
A Doctor’s Painful Struggle With an Opioid-Addicted Patient https://nyti.ms/2GBDmIR==
Michael Chabon, The Recipe for Life, New Yorker 2.5.18.
“You want to be a doctor, too?” the patient asks me, pushing up his left shirtsleeve the way my father has instructed him to do. He is an older man with jowls and a silvery crewcut, wearing a short-sleeved shirt and a necktie, and he is pinned to a kitchen chair by the boulder of his abdomen. The tap drips water into a cup in the kitchen sink. The smell of the patient’s dinner lingers, raw meat and fat against cast iron.
When I don’t immediately reply to his question, the patient looks up at my father, who has come to his home this evening to conduct an insurance physical. My father reaches into his black bag for his sphygmomanometer, unrolls the cuff, and uncoils the rubber tubing. Like many young doctors not long out of medical school, he supplements his income with these in-home exams. After putting in a full day as a pediatrician at the Phoenix Indian Hospital, where he has been posted by the U.S. Public Health Service, he comes home just long enough to shower and shave for a second time, change his shirt and tie, and grab a quick bite. Then he heads back out to perform exams for one of the big insurance companies, often taking me with him. Sometimes, as we did earlier tonight, we forgo dinner at home and stop at our favorite restaurant, a Mexican place called Ricardo’s.
“Cute little guy,” the patient says to my father in a confidential tone, then calls to me, parked in a corner on another kitchen chair, “You want to be a doctor, eh? Just like your daddy?” Trying again—maybe I didn’t hear him the first time.
I take my sphygmomanometer out of my black bag. Unlike my father’s, with its rubberized canvas cuff, sturdy squeeze bulb, and steel-and-glass gauge, mine is made entirely of brightly colored thin plastic, like my Taylor hammer, my otoscope, my syringe, and the stethoscope that I wear dangling like a pendant necklace, the way my father does, with the earpieces pincering my neck. My black bag is plastic, too, a flimsy, lightweight affair with none of the pachyderm heft and dignity of my father’s. The mouth of my father’s bag opens and closes smoothly on the hinges of a secret armature, clasped by a heavy brass tongue that slides home with a satisfying click. Mine pops open when you flip a plastic tab that has begun to shear loose and will soon snap off. A vial of candy “pills” was the sole advantage that my black bag possessed over my father’s, but I have long since prescribed and administered them to myself. The empty vial rolls around at the bottom of the bag.
I hunch my shoulders, racked with the dreadful hope that the patient will invite me to come over and “check” his blood pressure. I squeeze the bulb of my gimcrack instrument. I don’t feel that the word “cute” suits either me or the gravity of the situation. On my previous outings, a few patients have allowed me to pretend to stick them with my needleless needle and to hear their heart beat through my sham stethoscope. There is nothing that I want more than for my presence to be taken seriously, and nothing that can render me more painfully aware of my fraudulence. The truth is, I don’t especially want to be a doctor when I grow up. Or, rather, I’ve come to understand that while my presence at these house calls may be cute, or amusing, it is in no way promising:I know that I am not really cut out for the job.
Based partly on direct observation and partly on his tales of his own medical prowess, I have already formed the impression that my father is an excellent doctor. Though he will, in other ways, disappoint, disillusion, or unfavorably surprise me in the coming decades, this impression will stand. In his hospital tales, my father stars as a first-rate diagnostician with a near-Holmesian power for inferring rare or easily missed pathologies from the slightest of symptoms. As a small boy, I have no way (and no desire) to disprove these claims; I have to take his word for them. (Though I have observed that, whenever a patient on a TV show like “Marcus Welby, M.D.” or “Ben Casey” presents with odd symptoms, my father always makes what proves to be the correct diagnosis long before the first commercial break.)
But I have been an eyewitness to a number of displays of my father’s other remarkable skill as a doctor, one that mysteriously is never the focus of his storytelling: an uncommon gift for reassurance, for making his patients feel that he registers and sympathizes with their pain or discomfort and their anxieties about treatment itself; that he is really listening to them, really seeing them... (continues)==
For people with severe health anxiety, the Internet can be a terrible place
Searching online for health information can magnify the pool of potential problems to worry about, and researchers use the term “cyberchondria” to describe the interplay between health searches and health anxiety. By Emily Sohn
==
It's the birthday of the first woman to graduate from medical school, Elizabeth Blackwell, born on this day in Bristol, England, in 1821. She wanted to become a doctor because she knew that many women would rather discuss their health problems with another woman. She read medical texts and studied with doctors, but she was rejected by all the big medical schools. Finally the Geneva Medical College (which became Hobart College) in upstate New York accepted her. The faculty wasn't sure what to do with such a qualified candidate, and so they turned the decision over to the students. The male students voted unanimously to accept her. Her classmates and even professors considered many medical subjects too delicate for a woman, and didn't think she should be allowed to attend lectures on the reproductive system. But she graduated, became a doctor, and opened the New York Infirmary for Women and Children. WA Feb3
==
A Doctor’s Painful Struggle With an Opioid-Addicted Patient https://nyti.ms/2GBDmIR==
Michael Chabon, The Recipe for Life, New Yorker 2.5.18.
“You want to be a doctor, too?” the patient asks me, pushing up his left shirtsleeve the way my father has instructed him to do. He is an older man with jowls and a silvery crewcut, wearing a short-sleeved shirt and a necktie, and he is pinned to a kitchen chair by the boulder of his abdomen. The tap drips water into a cup in the kitchen sink. The smell of the patient’s dinner lingers, raw meat and fat against cast iron.
When I don’t immediately reply to his question, the patient looks up at my father, who has come to his home this evening to conduct an insurance physical. My father reaches into his black bag for his sphygmomanometer, unrolls the cuff, and uncoils the rubber tubing. Like many young doctors not long out of medical school, he supplements his income with these in-home exams. After putting in a full day as a pediatrician at the Phoenix Indian Hospital, where he has been posted by the U.S. Public Health Service, he comes home just long enough to shower and shave for a second time, change his shirt and tie, and grab a quick bite. Then he heads back out to perform exams for one of the big insurance companies, often taking me with him. Sometimes, as we did earlier tonight, we forgo dinner at home and stop at our favorite restaurant, a Mexican place called Ricardo’s.
“Cute little guy,” the patient says to my father in a confidential tone, then calls to me, parked in a corner on another kitchen chair, “You want to be a doctor, eh? Just like your daddy?” Trying again—maybe I didn’t hear him the first time.
I take my sphygmomanometer out of my black bag. Unlike my father’s, with its rubberized canvas cuff, sturdy squeeze bulb, and steel-and-glass gauge, mine is made entirely of brightly colored thin plastic, like my Taylor hammer, my otoscope, my syringe, and the stethoscope that I wear dangling like a pendant necklace, the way my father does, with the earpieces pincering my neck. My black bag is plastic, too, a flimsy, lightweight affair with none of the pachyderm heft and dignity of my father’s. The mouth of my father’s bag opens and closes smoothly on the hinges of a secret armature, clasped by a heavy brass tongue that slides home with a satisfying click. Mine pops open when you flip a plastic tab that has begun to shear loose and will soon snap off. A vial of candy “pills” was the sole advantage that my black bag possessed over my father’s, but I have long since prescribed and administered them to myself. The empty vial rolls around at the bottom of the bag.
I hunch my shoulders, racked with the dreadful hope that the patient will invite me to come over and “check” his blood pressure. I squeeze the bulb of my gimcrack instrument. I don’t feel that the word “cute” suits either me or the gravity of the situation. On my previous outings, a few patients have allowed me to pretend to stick them with my needleless needle and to hear their heart beat through my sham stethoscope. There is nothing that I want more than for my presence to be taken seriously, and nothing that can render me more painfully aware of my fraudulence. The truth is, I don’t especially want to be a doctor when I grow up. Or, rather, I’ve come to understand that while my presence at these house calls may be cute, or amusing, it is in no way promising:I know that I am not really cut out for the job.
Based partly on direct observation and partly on his tales of his own medical prowess, I have already formed the impression that my father is an excellent doctor. Though he will, in other ways, disappoint, disillusion, or unfavorably surprise me in the coming decades, this impression will stand. In his hospital tales, my father stars as a first-rate diagnostician with a near-Holmesian power for inferring rare or easily missed pathologies from the slightest of symptoms. As a small boy, I have no way (and no desire) to disprove these claims; I have to take his word for them. (Though I have observed that, whenever a patient on a TV show like “Marcus Welby, M.D.” or “Ben Casey” presents with odd symptoms, my father always makes what proves to be the correct diagnosis long before the first commercial break.)
But I have been an eyewitness to a number of displays of my father’s other remarkable skill as a doctor, one that mysteriously is never the focus of his storytelling: an uncommon gift for reassurance, for making his patients feel that he registers and sympathizes with their pain or discomfort and their anxieties about treatment itself; that he is really listening to them, really seeing them... (continues)==
For people with severe health anxiety, the Internet can be a terrible place
Searching online for health information can magnify the pool of potential problems to worry about, and researchers use the term “cyberchondria” to describe the interplay between health searches and health anxiety. By Emily Sohn
==
It's the birthday of the first woman to graduate from medical school, Elizabeth Blackwell, born on this day in Bristol, England, in 1821. She wanted to become a doctor because she knew that many women would rather discuss their health problems with another woman. She read medical texts and studied with doctors, but she was rejected by all the big medical schools. Finally the Geneva Medical College (which became Hobart College) in upstate New York accepted her. The faculty wasn't sure what to do with such a qualified candidate, and so they turned the decision over to the students. The male students voted unanimously to accept her. Her classmates and even professors considered many medical subjects too delicate for a woman, and didn't think she should be allowed to attend lectures on the reproductive system. But she graduated, became a doctor, and opened the New York Infirmary for Women and Children. WA Feb3
- Researchers are seeking drugs that can slow the rate of aging and the development of the debilitating chronic ailments that typically accompany it.
==
IACUC - Institutional Animal Care and Use Committee
The Institutional Animal Care and Use Committee (IACUC) is a regulatory body comprising MTSU faculty who are appointed by the University's President through the recommendations from the Institution's Faculty Senate. The IACUC is responsible for reviewing the activities that involve the use of animals to enforce humane & ethical practices to be adopted by the University employees. MTSU adopts the following minimum requirement for the Committee's constitution thereby complying with the requirements of both USDA and PHS...
The Institutional Animal Care and Use Committee (IACUC) is a regulatory body comprising MTSU faculty who are appointed by the University's President through the recommendations from the Institution's Faculty Senate. The IACUC is responsible for reviewing the activities that involve the use of animals to enforce humane & ethical practices to be adopted by the University employees. MTSU adopts the following minimum requirement for the Committee's constitution thereby complying with the requirements of both USDA and PHS...
==
Neil Gorsuch wrote the book on assisted suicide. Here’s what he said.
Not since 2006 has the Supreme Court taken up a case involving “death with dignity” legislation — the handful of state laws that allow people to end their lives with the help of a physician. That year, the court handed a victory to death with dignity advocates, ruling that the attorney general could not bar doctors in Oregon — the first state to pass such a law — from giving terminally ill patients drugs to facilitate suicide.
It was only the third time the court had heard a case challenging such statutes, and the six-member majority tread lightly, recognizing the sensitivity of the issue.
“Americans are engaged in an earnest and profound debate,” the majority wrote, quoting from a previous opinion, “about the morality, legality, and practicality of physician-assisted suicide.”
That debate is far from resolved today — and it’s one Neil Gorsuch, President Drumpf’s nominee to the high court, will surely be eager to weigh in on, should he win confirmation.
Gorsuch, a 49-year-old federal appeals court judge from Colorado, was tapped by Drumpf on Tuesday to replace Justice Antonin Scalia, who died last year after three decades on the Supreme Court. Aside from his bona fides as a lawyer and a jurist — which may all but guarantee a favorable vote in the Senate — Gorsuch has cultivated something of an expertise in assisted suicide and euthanasia in his legal career.
[Drumpf picks Colo. appeals court judge Neil Gorsuch for Supreme Court]
In 2006, the year he was nominated to the federal bench, he released a heavily researched book on the subject titled “The Future of Assisted Suicide and Euthanasia.” The front cover looks almost like a Tom Clancy novel, with purple all-caps block text set against a black background. But the book itself is a deep, highly cerebral overview of the ethical and legal debate surrounding the practices... (continues)
Alutrusitic for Autisitics?
Advocacy is a tricky situation when it comes to mental illness. Websites, charities, and celebrities all speak for people who cannot talk for themselves, but is that the truth? When I was first diagnosed with Autism Spectrum Disorder, I wanted information. This is the site that I thought would help me the most: Autism Speaks.
The charity is the face of the advocacy movement for Autism Spectrum Disorder. However, the first thing that a person sees is a young boy and a puzzle piece. These are the first problems with the organization. The average person who is considered autistic is young, and male when in reality the reason for this stereotype is the diagnosis criteria and the skills taught at the age of diagnosis. The puzzle piece is troubling because of the symbolism, implying that Autistic individuals are incomplete and can be fixed.
Now, I do not suggest that you dig into the entire history of the organization, but consider the following. The site is built for parents who are scared. When autism is defined, it uses bullet points of features that are nonconformist and mainly associated with children. This does nothing for the autistic adults, many of whom have no resources to rely on for a new diagnosis. Autism Speaks uses donations to focus on cures for the condition rather than support families of autistic individuals. And above all, none of their board represent the demographic that they represent.
So, why should you care? Well, these are the people talking about the condition that the media is listening to. Other mental illnesses are supported with groups that share experiences, promote identities and show that illness does not prevent success. Why should autism be any different? Should people who want to remove someone’s voice from the conversation be trusted to speak for that person? How do we advocate for ourselves when we aren’t considered people? These are questions I will probably live with forever, but I would like to hear your perspective.
Here are some links about Autism Speaks
http://www.teenink.com/opinion/social_issues_civics/article/507918/The-Controversy-of-Autism-Speaks/
Issues in Funding Medical Research
As we discuss more issues in the medical field, one question always arises, who will pay for this? Either the process or the research. I read an article by Robert Klein called "A New Paradigm for Funding Medical Research" where he discusses the issue in funding received by the government. It is a foundation of instability due to its reliance on the country's economic cycle, one that shifts drastically over years. This causes negative effects on scientific findings. With the rise of globalization it can only be said that this is a consequence worth noting as the risks of epidemics as well as ethical concerns due to cultural exchange arise. Klein believes that the system of the current health care funding is broken and its reliance on the industrial capital system is not an adequate basis. Particularly a key ethical issue in the foundation of medical research that stood out to me was as Klein notes, "The industrial capital system values direct financial returns; it is not designed to capture the societal benefits of longer productive lives or reduced health care costs, nor is it structured to capture the benefits to individuals of healthier, more vibrant lives". This issue lies in the value we as a society place on research for medical advancements.
Klein continues, pitching different models and steps to avoid these tumultuous fluctuations. I will attach the link to this article below. I look forward to hearing your thoughts, both on the ethical issue that arises as well as what we can do about the instability in medical research.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3727685/
Klein continues, pitching different models and steps to avoid these tumultuous fluctuations. I will attach the link to this article below. I look forward to hearing your thoughts, both on the ethical issue that arises as well as what we can do about the instability in medical research.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3727685/
Monday, January 28, 2019
These Patients Had Sickle-Cell Disease. Experimental Therapies Might Have Cured Them.
Success against sickle-cell would be “the first genetic cure of a common genetic disease” and could free tens of thousands of Americans from agonizing pain.
Scientists have long known what causes sickle-cell disease and its devastating effects: a single mutation in one errant gene. But for decades, there has been only modest progress against an inherited condition that mainly afflicts people of African descent.
With advances in gene therapy, that is quickly changing — so much so that scientists have begun to talk of a cure.
In a half-dozen clinical trials planned or underway, researchers are testing strategies for correcting the problem at the genetic level. Already a handful of the enrolled patients, who have endured an illness that causes excruciating bouts of pain, strokes and early death, no longer show signs of the disease.
Among them is Brandon Williams, 21, who lives with his mother in Chicago. Because of his sickle-cell disease, he had suffered four strokes by age 18. The damage makes it hard for him to speak. His older sister died of the disease... (continues)
With advances in gene therapy, that is quickly changing — so much so that scientists have begun to talk of a cure.
In a half-dozen clinical trials planned or underway, researchers are testing strategies for correcting the problem at the genetic level. Already a handful of the enrolled patients, who have endured an illness that causes excruciating bouts of pain, strokes and early death, no longer show signs of the disease.
Among them is Brandon Williams, 21, who lives with his mother in Chicago. Because of his sickle-cell disease, he had suffered four strokes by age 18. The damage makes it hard for him to speak. His older sister died of the disease... (continues)
Saturday, January 26, 2019
How does your garden grow?
Washington State Weighs New Option After Death: Human Composting
A green burial plot at the Woodlawn Cemetery in Snohomish, Wash.
SEATTLE — Leslie Christian recently added unusual language to her living will: After death, she hoped her remains would be reduced to soil and spread around to help out some flowers, or a tree. In essence, compost.
“It seems really gentle,” said Ms. Christian, 71, a financial adviser. “Comforting and natural.”
A bill before the Washington State Legislature would make this state the first in the nation — and probably the world, legal experts said — to explicitly allow human remains to be disposed of and reduced to soil through composting, or what the bill calls recomposition.
The prospect has drawn no public opponents in the state capital as yet, but it is a concept that sometimes raises eyebrows. Funeral directors say a common reaction to the idea, which has been explored and tested in recent scientific studies, is to cringe.
“There’s almost a revulsion at times, when you talk about human composting,” said Brian Flowers, the managing funeral director at Moles Farewell Tributes, a company north of Seattle that supports the bill... (continues)
A green burial plot at the Woodlawn Cemetery in Snohomish, Wash.
SEATTLE — Leslie Christian recently added unusual language to her living will: After death, she hoped her remains would be reduced to soil and spread around to help out some flowers, or a tree. In essence, compost.
“It seems really gentle,” said Ms. Christian, 71, a financial adviser. “Comforting and natural.”
A bill before the Washington State Legislature would make this state the first in the nation — and probably the world, legal experts said — to explicitly allow human remains to be disposed of and reduced to soil through composting, or what the bill calls recomposition.
The prospect has drawn no public opponents in the state capital as yet, but it is a concept that sometimes raises eyebrows. Funeral directors say a common reaction to the idea, which has been explored and tested in recent scientific studies, is to cringe.
“There’s almost a revulsion at times, when you talk about human composting,” said Brian Flowers, the managing funeral director at Moles Farewell Tributes, a company north of Seattle that supports the bill... (continues)
Radiolab: "Playing God" (on triage), etc.
On my way home from school one night last year this was on the radio. Highly recommended:
Also:
CRISPR
Radiolab
When people are dying and you can only save some, how do you choose? Maybe you save the youngest. Or the sickest. Maybe you even just put all the names in a hat and pick at random. Would your answer change if a sick person was standing right in front of you?
In this episode, we follow New York Times reporter Sheri Fink as she searches for the answer. In a warzone, a hurricane, a church basement, and an earthquake, the question remains the same. What happens, what should happen, when humans are forced to play god?Listen here.
Also:
CRISPR
It's been almost two years since we learned about CRISPR, a ninja-assassin-meets-DNA-editing-tool that has been billed as one of the most powerful, and potentially controversial, technologies ever discovered by scientists. In this episode, we catch up on what's been happening (it's a lot), and learn about CRISPR's potential to not only change human evolution, but every organism on the entire planet.Listen here.
Out drinking with a few biologists, Jad finds out about something called CRISPR. No, it’s not a robot or the latest dating app, it’s a method for genetic manipulation that is rewriting the way we change DNA. Scientists say they’ll someday be able to use CRISPR to fight cancer and maybe even bring animals back from the dead. Or, pretty much do whatever you want. Jad and Robert delve into how CRISPR does what it does, and consider whether we should be worried about a future full of flying pigs, or the simple fact that scientists have now used CRISPR to tweak the genes of human embryos.
Radiolab
Friday, January 25, 2019
Quiz Jan 29
Clinical Ethics. But let's first revisit whatever we didn't get to last time pertaining to "perspectives" (for instance, Plato's Euthyphro, the bioethical significance of the Biblical tale of Abraham and Isaac, et al)... and I just heard a fascinating episode of the Hidden Brain podcast exploring ways in which the convergence of different perspectives fuels creativity, including scientific creativity.
1. (T/F) Dignity, respect, and confidentiality are among the aspects of the clinical relationship which emphasize the importance of trust.
2. What (according to most recognized oaths and conventions) must always be the deciding factor guiding professional decisions?
3. The idea that the doctor always knows best is called what?
4. Is a diagnosis of mental illness grounds for establishing a patient's lack of capacity to render competent consent to treatment?
5. What general principle allows breach of confidentiality?
6. What term expresses the central ethical concern about "designer babies"? What poet implicitly expressed it?
7. Why have organizations like the WHO opposed any form of organ trading?
8. Besides the Kantian objection, what other major ethical issue currently affects regenerative medicine?
9. What does palliative medicine help recover?
10. What would most of us consider an unwelcome consequence of not retaining the acts/omissions distinction with respect to our response to famine (for example)?
7. Why have organizations like the WHO opposed any form of organ trading?
8. Besides the Kantian objection, what other major ethical issue currently affects regenerative medicine?
9. What does palliative medicine help recover?
10. What would most of us consider an unwelcome consequence of not retaining the acts/omissions distinction with respect to our response to famine (for example)?
DQ
- How do you generally go about establishing trust in a new relationship? Do such general considerations apply equally to the clinical relationship? How does "professionalism" relate to trust?
- Considering the "demented professor" (81) and other instances of patients whose expressed "best interests" may conflict with a clinician's therapeutic impulses: how important is the patient's present happiness, in influencing your clinical evaluation?
- What's wrong, if in fact the doctor does possess more accurate information and more relevant experience, with treating the patient after the analogy of parent and child?
- What would Dr. House do about patients who make (in his opinion) foolish decisions regarding their care? Would you hire him to work in your hospital?
- Under what circumstances would you NOT violate confidentiality and inform a patient's partner that they were HIV positive?
- What concept is more relevant in evaluating the ethical status of abortion: viability, humanity, personhood, maternal rights, or... ?
- What do you think of Thomson's violinist analogy (91-2)?
- Can a baby really have five parents (as opposed to five co-progenitors)? How do you define parenthood?
- Should surrogacy, organ trafficking, and transplant tourism be regulated? How, and by whom?
- Do you think our society has a healthy attitude towards mental illness? Is it possible to declare a politically and ideologically neutral standard of sanity?
- How would you counsel patients who insist they no longer value their "quality of life" and refuse potentially effective treatment and medication?
- Can the medical profession ever fully embrace the concept of ars moriendi, the art of dying?
- Can you imagine ever facilitating a suicide, professionaly or personally?
- Is there anything wrong with displaying cadavers in a museum exhibit (as in "Bodies: The Exhibition")? What guidelines should be followed?
==
Nurse Charged With Sexual Assault of Woman in Vegetative State Who Gave Birth
A nurse at a Phoenix nursing home who had been assigned to care for a woman in a vegetative state who was raped and later gave birth to a child was charged on Wednesday with sexual assault, the police said.
Detectives at the Phoenix Police Department took the nurse, Nathan Sutherland, 36, in for questioning in the case on Tuesday, the police said, and collected a DNA sample from him that matched that of the child, a boy who was born on Dec. 29. Mr. Sutherland was booked on Wednesday morning at the Maricopa County Jail on one charge of sexual assault and one charge of vulnerable adult abuse, the police said.
“Through a combination of good old-fashioned police work, combing through evidence, talking to people and following up on information, combined with the marvels of DNA technology, we were able to identify and develop probable cause to arrest a suspect,” Jeri L. Williams, the Police Department’s chief, said at a news conference on Wednesday.
Detectives started to focus on Mr. Sutherland because he was among the medical staff members at the nursing home, Hacienda HealthCare, who were assigned to care for the woman around the time last year that the police believe she was assaulted. The woman had been at the nursing home since 1992 and since then had been in the same condition, unable to communicate or move, according to medical records. A lawyer for the family on Wednesday said they were aware of the arrest but had no comment... (continues)
Detectives at the Phoenix Police Department took the nurse, Nathan Sutherland, 36, in for questioning in the case on Tuesday, the police said, and collected a DNA sample from him that matched that of the child, a boy who was born on Dec. 29. Mr. Sutherland was booked on Wednesday morning at the Maricopa County Jail on one charge of sexual assault and one charge of vulnerable adult abuse, the police said.
“Through a combination of good old-fashioned police work, combing through evidence, talking to people and following up on information, combined with the marvels of DNA technology, we were able to identify and develop probable cause to arrest a suspect,” Jeri L. Williams, the Police Department’s chief, said at a news conference on Wednesday.
Detectives started to focus on Mr. Sutherland because he was among the medical staff members at the nursing home, Hacienda HealthCare, who were assigned to care for the woman around the time last year that the police believe she was assaulted. The woman had been at the nursing home since 1992 and since then had been in the same condition, unable to communicate or move, according to medical records. A lawyer for the family on Wednesday said they were aware of the arrest but had no comment... (continues)
==
Also of interest:
Drug Shortages Forcing Hard Decisions on Rationing Treatments...In a survey of cancer doctors conducted in 2012 and 2013, 83 percent of respondents who regularly prescribed cancer drugs reported having been unable to provide the preferred chemotherapy agent at least once during the previous six months. More than a third of them said they had to delay treatment “and make difficult choices about which patients to exclude,” according to a letter published in The New England Journal of Medicine.
The threat of future shortages in children’s treatments is serious enough that Dr. Peter Adamson, who leads the Children’s Oncology Group, the largest international group of children’s cancer researchers, assigned his organization to set priorities. “We’ve been forced into what we think is a highly unethical corner,” he said in an interview...
- "Why I Want a 3-parent Baby"
- http://www.nytimes.com/2015/
02/01/us/medical-costs-rise- as-retirees-winter-in-south. html?smid=nytcore-iphone- share&smprod=nytcore-iphone Data suggests that many doctors, especially those in states known as winter getaways, increase their revenues by expanding the volume of diagnostic exams. - http://www.nytimes.com/2015/
02/01/opinion/sunday/frank- bruni-disneyland-measles-and- madness.html?smid=nytcore- iphone-share&smprod=nytcore- iphone For the sake of children’s health, let’s face facts and repudiate fiction. - Where is the public outrage over needless suffering at the end of life?
- Promise And Problems In Personalized Medicine, WBUR On Point. Precision medicine, tailored to your genes. President Obama announces a big push. We’ll take a look at the track record and potential. Plus: we’ll look at the growing measles outbreak around the United States...
- A note from Michael Pollan: The food ethics guru notes his return to a theme he explored in Botany of Desire, ... bit.ly/1tXibIA
==
Scientists create a part-human, part-pig embryo — raising the possibility of interspecies organ transplants
http://wapo.st/2k85Wt3
http://www.nytimes.com/2017/
Human stem cells could be implanted in an early pig embryo, making a chimera with human organs suitable for transplant.
http://www.nytimes.com/2017/
The president has greatly expanded a policy restricting federal aid to health organizations abroad that talk to women about abortion.
http://wapo.st/2k85Wt3
http://www.nytimes.com/2017/
Human stem cells could be implanted in an early pig embryo, making a chimera with human organs suitable for transplant.
http://www.nytimes.com/2017/
The president has greatly expanded a policy restricting federal aid to health organizations abroad that talk to women about abortion.
==
The Struggle to Conceive With Frozen Eggs
Brigitte Adams caused a sensation four years ago when she appeared on the cover of Bloomberg Businessweek under the headline, “Freeze your eggs, Free your career.” She was single and blond, a Vassar graduate who spoke fluent Italian, and was working in tech marketing for a number of prestigious companies. Her story was one of empowerment, how a new fertility procedure was giving women more choices, as the magazine noted provocatively, “in the quest to have it all.” (continues, WaPo)
==
Does living forever sound ideal? These 5 new books will change your mind.Aside from Betty White, the examples of immortality are not encouraging. The ancient Greeks — who, by the way, are all dead now — sang a particularly harrowing tale of Tithonus. He was that prince who got to live forever but kept aging, which is why you should try to stay out of the sun as much as possible when you are young. Centuries later, Christianity promised everybody eternal life, but where and how you might be spending it was a matter of fiery debate. (continues, WaPo)==
The Men Who Want to Live Forever by Dara Horn
Would you like to live forever? Some billionaires, already invincible in every other way, have decided that they also deserve not to die. Today several biotech companies, fueled by Silicon Valley fortunes, are devoted to “life extension” — or as some put it, to solving “the problem of death.”
It’s a cause championed by the tech billionaire Peter Thiel, the TED Talk darling Aubrey de Gray, Google’s billion-dollar Calico longevity lab and investment by Amazon’s Jeff Bezos. The National Academy of Medicine, an independent group, recently dedicated funding to “end aging forever.”
As the longevity entrepreneur Arram Sabeti told The New Yorker: “The proposition that we can live forever is obvious. It doesn’t violate the laws of physics, so we can achieve it.” Of all the slightly creepy aspects to this trend, the strangest is the least noticed: The people publicly championing life extension are mainly men.
Not all of them, of course. In 2009, Elizabeth Blackburn received the Nobel Prize for her work on telomeres, protein caps on chromosomes that may be a key to understanding aging. Cynthia Kenyon, the vice president for aging research at Calico, studied life extension long before it was cool; her former protégée, Laura Deming, now runs a venture capital fund for the cause. But these women are focused on curbing age-related pathology, a concept about as controversial as cancer research. They do not appear thirsty for the Fountain of Youth.
Professor Blackburn’s new book on telomeres couldn’t be clearer. “Does our research show that by maintaining your telomeres you will live into your hundreds?” it says. “No. Everyone’s cells become old and eventually we die.” Ms. Kenyon once described her research’s goal as “to just have a healthy life and then turn out the lights.” Even Ms. Deming, a 23-year-old prodigy who worked in Ms. Kenyon’s lab at age 12, points out that “aging is innately important to us.”
Few of these experts come close to matching the gaudy statements of the longevity investor and “biohacker” Dave Asprey, who has told journalists, “I decided that I was just not going to die.” Or those of Brian Hanley, a microbiologist who has tested an anti-aging gene therapy he developed on himself, who claimed: “There’s a bunch of things that will need to be done to achieve life spans into at least hundreds of years. But we’ll get there.” Or of the 74-year-old fashion mogul Peter Nygard, who during a promotional clip receives injections of his own stem cells to reverse his aging while declaring: “Ponce de León had the right idea. He was just too early. That was then. This is now.”
I came across Mr. Nygard’s ode to human endurance three years ago while beginning research on a novel about a woman who can’t die, and watching that video allowed me to experience something close to life extension. As Mr. Nygard compared himself to Leonardo da Vinci and Benjamin Franklin while dancing with a bevy of models — or as a voice-over explained, “living a life most can only dream of” — nine minutes of YouTube expanded into a vapid eternity, where time melted into a vortex of solipsism.
At that time I was immersed in caring for my four young children, and this paean to everlasting youth seemed especially stupid. I recall thinking that if this was eternal life, death didn’t seem that bad.
But now, as powerful men have begun falling like dominoes under accusations of sexual assault, that video with its young women clustered around an elderly multimillionaire has haunted me anew. As I recall my discomfort with the proclamations of longevity-driven men who hope to achieve “escape velocity,” I think of the astonishing hubris of the Harvey Weinsteins of the world, those who saw young women’s bodies as theirs for the taking.
Much has been said about why we allowed such behavior to go unchecked. What has remained unsaid, because it is so obvious, is what would make someone so shameless in the first place: These people believed they were invincible. They saw their own bodies as entirely theirs and other people’s bodies as at their disposal; apparently nothing in their lives led them to believe otherwise.
Historically, this is a mistake that few women would make, because until very recently, the physical experience of being a woman entailed exactly the opposite — and not only because women have to hold their keys in self-defense while walking through parking lots at night. It’s only very recently that women have widely participated in public life, but it’s even more recently that men have been welcome, or even expected, to provide physical care for vulnerable people.
Only for a nanosecond of human history have men even slightly shared what was once exclusively a woman’s burden: the relentless daily labor of caring for another person’s body, the life-preserving work of cleaning feces and vomit, the constant cycle of cooking and feeding and blanketing and bathing, whether for the young, the ill or the old. For nearly as long as there have been humans, being a female human has meant a daily nonoptional immersion in the fragility of human life and the endless effort required to sustain it.
Obviously not everyone who provides care for others is a saint. But engaging in that daily devotion, or even living with its expectation, has enormous potential to change a person. It forces one to constantly imagine the world from someone else’s point of view: Is he hungry? Maybe she’s tired. Is his back hurting him? What is she trying to say?
The most obvious cure for today’s gender inequities is to put more women in power. But if we really hope to create an equal society, we will also need more men to care for the powerless — more women in the boardroom, but also more men at the nurses’ station and the changing table, immersed in daily physical empathy. If that sounds like an evolutionary impossibility, well, it doesn’t violate the laws of physics, so we can achieve it. It is surely worth at least as much investment as defeating death.
Perhaps it takes the promise of immortality to inspire the self-absorbed to invest in unsexy work like Alzheimer’s research. If so, we may all one day bless the inane death-defiance as a means to a worthy end.
But men who hope to live forever might pause on their eternal journey to consider the frightening void at invincibility’s core. Death is the ultimate vulnerability. It is the moment when all of us must confront exactly what so many women have known all too well: You are a body, only a body, and nothing more.
Dara Horn is the author, most recently, of the novel “Eternal Life.”
An old post-
Bioethics today is about the ways our vision of issues and outcomes may be occluded, blurred, or otherwise compromised by our respective points of view or perspectives. Of course this is not unique to bioethics, all human comprehension is subject to bias by the attenuation of culture, gender, religion, ideology, experience, the absence of experience, greed, egoism, and on our list could go. It is in our nature to see what we've seen, to see what we want to see, to see through a glass darkly. Without corrected vision the people perish.
Our native tendency to frame experience incorrectly, conformable to our own pre-vision and hence occlusive of other ways of seeing and clinically intervening, is a constant challenge to the fair-minded ethicist. Bioethical philosophers across the perspectival spectrum presume to prescribe corrective frames, but inattention to the varieties of sight is a constant hazard. Here's a link to a good little essay on the subject, from esteemed bioethicist Arthur Caplan: "When Religion Drumpfs Medicine."
We should play with this metaphor. As a lifetime wearer of framed corrective lenses, I can attest to the temporary excitement of a new prescription, or even just a stylish new frame to house the old set of lenses. The trick is always to find frames that hold up through every season of wear, that don't grow tiresome, and that justify the expense of change. (My wife returned from Costco one day reporting that the same frames she'd found at the Eye Doc's were $100s cheaper there.) Sometimes new lenses in the old frame suffice, sometimes you just need a new look.
So, some of the perspectives we'll try to focus and reframe today: attitudes and assumptions around HIV/AIDS, especially as occluded by miseducation; violence as a public health issue; "feminist critiques" of contingently-drawn, historically-conditioned categories of masculinity and femininity, locked into patriarchal institutions and practices that discriminate against women; misogyny; marginalization; advocacy; embodiment; empowerment; relational autonomy; metaphysical dualism; care; furor therapeuticus; female genital mutilation; "Asian bioethics"; Plato's Euthyphro; Abraham & Isaac; Buddhism; and more.
How do you get that "new look"? I always like to suggest trying the John Rawls Original Position/Veil of Ignorance frames. Some of us can wear them.
One more indulgence, before discussion: the snarly TV doc Gregory House was suggested by a student last semester as a good example of how some practitioners seem driven less by the patient's best care than by their own egoism. But, getting the diagnosis and treatment right regardless of motive and ego still seems the most important thing. Doesn't it? Maybe you can find & share links to other YouTube moments illustrative of good and bad medical-ethical practice.
Also of interest:
HHS nominee skirts questions about impact of Drumpf’s executive order on ACA
finished plan to replace the law.
At a testy Senate confirmation hearing on his nomination to lead the Department of Health and Human Services, Rep. Tom Price (R-Ga.) sought to play down the influence he would have on reshaping the health-care system along conservative lines, while attempting to deflect accusations from Democrats about his ethics.
He repeatedly flashed his long-standing distaste for federal insurance standards and other government strategies to guide medical care. And although he embraced certain policies popular within the GOP, such as special insurance pools for patients with preexisting medical conditions, he steered clear of other ideas he has supported, including the transformation of Medicaid from an entitlement program for lower-income people to a set of block grants to states.
By the time the hearing ended after four hours, the Senate Finance Committee’s partisan divisions appeared as bitter as they had at the beginning, with the Republicans aligned solidly behind the nominee despite sharp Democratic attacks on his investment and legislative practices.
Chairman Orrin G. Hatch (R-Utah) praised Price as a singularly qualified nominee and took broad swipes at Senate Democrats, saying they were tearing at the fabric of the chamber as an institution with their attempts to undercut Drumpf’s Cabinet choices.
The committee’s ranking Democrat, Sen. Ron Wyden (Ore.), countered that Price, if confirmed, would “take America back to the dark days when health care was for the healthy and the wealthy.” Focusing on the private investments in health-care companies that could have benefited from bills Price sponsored, Wyden said that “it is hard to see this as anything but a conflict of interest and an abuse of position.”
[Who is Tom Price?]
A fresh allegation Tuesday was that Price underreported to the committee and the Office of Government Ethics the value of shares he holds in an Australian company, Innate Immunotherapeutics. Price, who purchased some of that stock through a discounted, private offering, attributed the underreporting to “a clerical error” and a misunderstanding of the question.
“The reality is that everything that I did was ethical, aboveboard, legal and transparent,” Price said — a message Republicans sought to reinforce throughout the hearing.
Democrats targeted most of their questioning on the direction that Price, if confirmed, would try to take the health-care system. Price demurred repeatedly.
For instance, he sidestepped a series of questions about the effects of the sweeping order Drumpf issued just hours after his swearing-in that directed agencies to lift or soften federal rules implementing aspects of the ACA. Price declined to commit that no one would be harmed, that no one would lose insurance coverage or that the regulations would be rewritten only after a plan exists to replace the 2010 health-care law.
He similarly deflected a question about whether the new administration would try to stop enforcement of the ACA’s individual insurance requirement prior to a replacement plan.
See how your coverage could be impacted by four prominent plans proposed by RepublicansVIEW GRAPHIC
“I commit to working with you,” Price finally told Wyden after reiterating that his goal is to ensure all Americans have an opportunity for access to health insurance. The ACA’s goal is universal coverage.
“We didn’t get an answer,” Wyden retorted.
Price also skirted questions by Sen. Sherrod Brown (D-Ohio) about Drumpf’s statements the weekend before his inauguration that the health-care plan he was completing would provide “insurance for everybody.”
Brown asked: “President Drumpf said he’s working with you on a replacement plan for the ACA, which is nearly finished and will be revealed after your confirmation. Is that true?”
Price replied: “It’s true that he said that, yes.”
The packed hearing room broke into laughter.
Brown persisted: “Did the president lie about this, that he’s not working with you?”
The nominee gave an oblique answer, saying, “I’ve had conversations with the president about health care.”
[HHS nominee’s mix of investments, donations, legislations keeps raising questions]
Tuesday’s hearing was the more significant of two appearances Price has made in the past week on Capitol Hill because the Finance Committee has jurisdiction to vote on his nomination. A date has not been set.
Democrats’ numerous attacks on Price in the past week prompted Sen. Johnny Isakson (R-Ga.), who officially introduced Price to his Finance Committee colleagues, to say, “I feel like I’ve been asked to be a character witness in a felony trial in the sentencing phase of a conviction.” WaPo
==
Faith-Based Decisions: Parents Who Refuse Appropriate Care for Their Children
Adam Lovell*, an active 2 ½ -year-old boy, was healthy until the day his parents took him to the local emergency department for vomiting and a suspected case of acute gastroenteritis. To the physicians, Adam appeared lethargic and was responsive only to painful stimulus. A blood culture was obtained, and other laboratory tests were performed. The blood culture later grew a meningococcus. Within hours "purple splotches" appeared on his face, legs, and trunk. Adam was diagnosed with meningococcemia and was started on appropriate antibiotics and steroids administered intravenously. Adam was intubated to stabilize his airway and transported to the County Memorial Hospital. On arrival, his perfusion was poor and blood pressure low. The tips of all his digits were dark blue; purpura (purple splotches) were present over most of his trunk, feet, and hands in a "stocking-glove" distribution. Intravenous fluid boluses and vasoactive drug infusions were administered. Adam's parents consented to multiple blood component therapy to treat a coagulopathy. Adam was also treated for respiratory failure related to meningococcal sepsis with both conventional and high frequency mechanical ventilation for the first 11 days of hospitalization.
At 10 days, Adam had well demarcated patches of dry, devitalized tissue (dry gangrene) on both of his feet, his left hand, and the fingers of his right hand. An eschar was present on the posterior surface of his right thigh. Ulcerated areas of skin were present in the perineal region. Consulting surgeons talked to his parents about the risks, benefits, and alternatives of amputation and debridement of portions of both of Adam's feet, his left hand, and the fingers of his right hand. The Lovells consented to the debridement and surgical treatment and signed the consent form. Shortly thereafter the family's minister came to the hospital and prayed with Adam's parents for God to restore life to the devitalized tissues. Soon afterward, the Lovells rescinded consent to surgical treatment and communicated that they wished to allow time to elapse so that God could heal Adam's dead and injured tissues. When the physician and the surgeon told Adam's parents that infection and sepsis would be inevitable without treatment, they agreed verbally that, in the event of sepsis, amputation should be performed.
Over the ensuing 2 ½ weeks, physicians met with the Lovells and vigorously attempted to persuade them to proceed with Adam's amputation and debridement of dead tissues. Mr. and Mrs. Lovell remained adamant that an expectant approach be maintained. During this time neither sepsis nor wet gangrene, which would have offered absolute indication for surgical intervention, occurred. Despite the best efforts of the family and staff, many hours elapsed where Adam remained quiet and alone in his bed. He would cry and appeared to be sad. At times he cried out "hand" while gazing at his outstretched and mummified hands. During visits, the Lovells read the Bible to Adam and assured him that God would direct his hands and feet to re-grow. The Lovells asserted to the staff that Jesus had arisen from the dead and shown himself to believers, and that God would revitalize Adam's dead tissues. Both family-associated and hospital-based clergy were regularly present to expand opportunities for mutual understanding of religious and medical issues. Adam's parents were repeatedly confronted with the ever-present and increasingly imminent reality that Adam needed amputations to prevent new onset of sepsis and to avoid possible death from sepsis.
After almost a month in the pediatric intensive care unit, Adam began to experience fevers and his white blood cell counts increased; both signs were indicative of developing infection. Therapy with topical and systemic antibiotics was continued and modified. His parents were informed of the changes and of the increasing need to consent to surgical therapy. In an effort to reinforce the inescapable need for surgical therapy, the physicians consulted with a burn surgeon at a neighboring institution by telemedicine. The surgeon confirmed that amputation was unavoidable. These communications were shared with the Lovells, who nevertheless, were not dissuaded from insisting upon further observation. Despite considerable effort to understand and support the parents by their own family members, by the medical staff, by social service, by psychology and by clergy (hospital and family), a clear impasse had been reached. The Division of Social Services (DSS) was engaged to evaluate the case for a possible claim of medical neglect against Adam's parents. With the possibility of the child's custody being assumed by DSS, the parents signed consent for amputation and debridement. The mother signed consent because "only death would take my baby from me." The family requested that a "hands-on" surgical evaluation be performed at another medical facility. This request was granted. Expedited transfer was made, surgical intervention was deemed necessary by the receiving surgeon and amputation and debridement followed within 2 days.
“I commit to working with you,” Price finally told Wyden after reiterating that his goal is to ensure all Americans have an opportunity for access to health insurance. The ACA’s goal is universal coverage.
“We didn’t get an answer,” Wyden retorted.
Price also skirted questions by Sen. Sherrod Brown (D-Ohio) about Drumpf’s statements the weekend before his inauguration that the health-care plan he was completing would provide “insurance for everybody.”
Brown asked: “President Drumpf said he’s working with you on a replacement plan for the ACA, which is nearly finished and will be revealed after your confirmation. Is that true?”
Price replied: “It’s true that he said that, yes.”
The packed hearing room broke into laughter.
Brown persisted: “Did the president lie about this, that he’s not working with you?”
The nominee gave an oblique answer, saying, “I’ve had conversations with the president about health care.”
[HHS nominee’s mix of investments, donations, legislations keeps raising questions]
Tuesday’s hearing was the more significant of two appearances Price has made in the past week on Capitol Hill because the Finance Committee has jurisdiction to vote on his nomination. A date has not been set.
Democrats’ numerous attacks on Price in the past week prompted Sen. Johnny Isakson (R-Ga.), who officially introduced Price to his Finance Committee colleagues, to say, “I feel like I’ve been asked to be a character witness in a felony trial in the sentencing phase of a conviction.” WaPo
==
Faith-Based Decisions: Parents Who Refuse Appropriate Care for Their Children
Adam Lovell*, an active 2 ½ -year-old boy, was healthy until the day his parents took him to the local emergency department for vomiting and a suspected case of acute gastroenteritis. To the physicians, Adam appeared lethargic and was responsive only to painful stimulus. A blood culture was obtained, and other laboratory tests were performed. The blood culture later grew a meningococcus. Within hours "purple splotches" appeared on his face, legs, and trunk. Adam was diagnosed with meningococcemia and was started on appropriate antibiotics and steroids administered intravenously. Adam was intubated to stabilize his airway and transported to the County Memorial Hospital. On arrival, his perfusion was poor and blood pressure low. The tips of all his digits were dark blue; purpura (purple splotches) were present over most of his trunk, feet, and hands in a "stocking-glove" distribution. Intravenous fluid boluses and vasoactive drug infusions were administered. Adam's parents consented to multiple blood component therapy to treat a coagulopathy. Adam was also treated for respiratory failure related to meningococcal sepsis with both conventional and high frequency mechanical ventilation for the first 11 days of hospitalization.
At 10 days, Adam had well demarcated patches of dry, devitalized tissue (dry gangrene) on both of his feet, his left hand, and the fingers of his right hand. An eschar was present on the posterior surface of his right thigh. Ulcerated areas of skin were present in the perineal region. Consulting surgeons talked to his parents about the risks, benefits, and alternatives of amputation and debridement of portions of both of Adam's feet, his left hand, and the fingers of his right hand. The Lovells consented to the debridement and surgical treatment and signed the consent form. Shortly thereafter the family's minister came to the hospital and prayed with Adam's parents for God to restore life to the devitalized tissues. Soon afterward, the Lovells rescinded consent to surgical treatment and communicated that they wished to allow time to elapse so that God could heal Adam's dead and injured tissues. When the physician and the surgeon told Adam's parents that infection and sepsis would be inevitable without treatment, they agreed verbally that, in the event of sepsis, amputation should be performed.
Over the ensuing 2 ½ weeks, physicians met with the Lovells and vigorously attempted to persuade them to proceed with Adam's amputation and debridement of dead tissues. Mr. and Mrs. Lovell remained adamant that an expectant approach be maintained. During this time neither sepsis nor wet gangrene, which would have offered absolute indication for surgical intervention, occurred. Despite the best efforts of the family and staff, many hours elapsed where Adam remained quiet and alone in his bed. He would cry and appeared to be sad. At times he cried out "hand" while gazing at his outstretched and mummified hands. During visits, the Lovells read the Bible to Adam and assured him that God would direct his hands and feet to re-grow. The Lovells asserted to the staff that Jesus had arisen from the dead and shown himself to believers, and that God would revitalize Adam's dead tissues. Both family-associated and hospital-based clergy were regularly present to expand opportunities for mutual understanding of religious and medical issues. Adam's parents were repeatedly confronted with the ever-present and increasingly imminent reality that Adam needed amputations to prevent new onset of sepsis and to avoid possible death from sepsis.
After almost a month in the pediatric intensive care unit, Adam began to experience fevers and his white blood cell counts increased; both signs were indicative of developing infection. Therapy with topical and systemic antibiotics was continued and modified. His parents were informed of the changes and of the increasing need to consent to surgical therapy. In an effort to reinforce the inescapable need for surgical therapy, the physicians consulted with a burn surgeon at a neighboring institution by telemedicine. The surgeon confirmed that amputation was unavoidable. These communications were shared with the Lovells, who nevertheless, were not dissuaded from insisting upon further observation. Despite considerable effort to understand and support the parents by their own family members, by the medical staff, by social service, by psychology and by clergy (hospital and family), a clear impasse had been reached. The Division of Social Services (DSS) was engaged to evaluate the case for a possible claim of medical neglect against Adam's parents. With the possibility of the child's custody being assumed by DSS, the parents signed consent for amputation and debridement. The mother signed consent because "only death would take my baby from me." The family requested that a "hands-on" surgical evaluation be performed at another medical facility. This request was granted. Expedited transfer was made, surgical intervention was deemed necessary by the receiving surgeon and amputation and debridement followed within 2 days.
(continues)
==
Letting them die: parents refuse medical help for children in the name of Christ
“Yes, I would like to see my parents prosecuted.”
Why?
“They deserve it.” She pauses. “And it might stop others.”
Mariah is 20 but she’s frail and permanently disabled. She has pulmonary hypertension and when she’s not bedridden, she has to carry an oxygen tank that allows her to breathe. At times, she has had screws in her bones to anchor her breathing device. She may soon have no option for a cure except a heart and lung transplant – an extremely risky procedure.
All this could have been prevented in her infancy by closing a small congenital hole in her heart. It could even have been successfully treated in later years, before irreversible damage was done. But Mariah’s parents were fundamentalist Mormons who went off the grid in northern Idaho in the 1990s and refused to take their children to doctors, believing that illnesses could be healed through faith and the power of prayer.
As she grew sicker and sicker, Mariah’s parents would pray over her and use alternative medicine. Until she finally left home two years ago, she did not have a social security number or a birth certificate.
Had they been in neighboring Oregon, her parents could have been booked for medical neglect. In Mariah’s case, as in scores of others of instances of preventible death among children in Idaho since the 1970s, laws exempt dogmatic faith healers from prosecution, and she and her sister recently took part in a panel discussion with lawmakers at the state capitol about the issue. Idaho is one of only six states that offer a faith-based shield for felony crimes such as manslaughter.
Some of those enjoying legal protection are fringe Mormon families like Mariah’s, many of whom live in the state’s north. But a large number of children have died in southern Idaho, near Boise, in families belonging to a reclusive, Pentecostal faith-healing sect called the Followers of Christ... (continues)
==
Letting them die: parents refuse medical help for children in the name of Christ
The Followers of Christ is a religious sect that preaches faith healing in states such as Idaho, which offers a faith-based shield for felony crimes – despite alarming child mortality rates among these groupsMariah Walton’s voice is quiet – her lungs have been wrecked by her illness, and her respirator doesn’t help. But her tone is resolute.
“Yes, I would like to see my parents prosecuted.”
Why?
“They deserve it.” She pauses. “And it might stop others.”
Mariah is 20 but she’s frail and permanently disabled. She has pulmonary hypertension and when she’s not bedridden, she has to carry an oxygen tank that allows her to breathe. At times, she has had screws in her bones to anchor her breathing device. She may soon have no option for a cure except a heart and lung transplant – an extremely risky procedure.
All this could have been prevented in her infancy by closing a small congenital hole in her heart. It could even have been successfully treated in later years, before irreversible damage was done. But Mariah’s parents were fundamentalist Mormons who went off the grid in northern Idaho in the 1990s and refused to take their children to doctors, believing that illnesses could be healed through faith and the power of prayer.
As she grew sicker and sicker, Mariah’s parents would pray over her and use alternative medicine. Until she finally left home two years ago, she did not have a social security number or a birth certificate.
Had they been in neighboring Oregon, her parents could have been booked for medical neglect. In Mariah’s case, as in scores of others of instances of preventible death among children in Idaho since the 1970s, laws exempt dogmatic faith healers from prosecution, and she and her sister recently took part in a panel discussion with lawmakers at the state capitol about the issue. Idaho is one of only six states that offer a faith-based shield for felony crimes such as manslaughter.
Some of those enjoying legal protection are fringe Mormon families like Mariah’s, many of whom live in the state’s north. But a large number of children have died in southern Idaho, near Boise, in families belonging to a reclusive, Pentecostal faith-healing sect called the Followers of Christ... (continues)
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Today in Bioethics we'll talk "research." Things like clinical trials and research involving animals and their rights, and genetics, and epidemiology. We'll look at the funding gap between what we need to cure and where our research dollars are actually going, and at the moral imperative of genuine and informed consent. We'll look at disturbing instances of fraudulent and dishonest research. And we'll consider Peter Singer's claims about "speciesism."
The future of research is a daunting source of apprehension and speculation. Michael Sandel and Bill McKibben have aired serious concerns about genetic and other "enhancement" research as potentially catastrophic for our capacity to achieve or even recognize "meaningful" lives. Enhanced may not mean improved.
1. Name one of the basic requirements agreed upon by all codes devised to protect individuals from malicious research.
2. What decree states that consent must be gained in all experimentation with human beings?
3. Name one of four areas of research discussed in the book.
4. Which famous contemporary ethicist is a sharp critic of speciesism?
5. Name one of four R's used in international legislation pertaining to animal rights in research?
6. Dilemmas in epidemiological research illiustrate what general point?
7. What did Hwang Woo-suk do?
8. What is the term for altering the numbers in a calculation to make the hypothesis more convincing, with no justification form the research findings for such members?
9. What categories of human enhancement does Campbell enumerate, and what does he identify as its "extreme end"?
10. What is the "10/90 Gap"?
DQ:
- Can there really ever be "fully informed" voluntary consent, given the many unknown variables and unpredicted consequences involved in most research?
- Discuss: "Trials of pharmaceuticals may be driven as much by commercial considerations as by the likelihood of real therapeutic gain." 122
- What concerns do you have about the use of animals in medical research? Is speciesism one of them? 10 medical breakthroughs due to animal testing... PETA... Touring an animal research facility
- What limits, if any, would you like to see imposed on genetic research and the uses to which it may be put?
- Were ethical improprieties committed in the case of Henrietta Lacks, whose cells (HELA cells) were harvested without her consent? (Rebecca Skloot... BBC...CBS...)
- If "dreams of perfect health by the better-off will determine the research agenda" in the future, resulting in soaring health care costs and greater health "enhancement" opportunities for the wealthy, what should be done to insure adequate attention to "the health problems of most of the world's population"? 129
- Should we be worried about a "Prozac revolution" and a "brave new world" of somatically-induced apathetic bliss? 130
- Would you give special priority to any of Campbell's five enhancement categories (130)? Is "Transcendence"-style enhancement beyond the realm of reasonable concern (given the considerable monied interest of people like Larry Page)?
- Comment: "Why would we want such a 'posthuman' future? Are our lives better if we become physically stronger or more agile, or have an increased intelligence, or live for centuries?" 131
- Is the outsourcing of clinical drug trials to developing countries ethically defensible? 132
- How would you propose making research priorities "aligned to the needs of the majority"? 133
- Is it likely that biobanks and other communitarian initiatives will in the future "prioritize health research according to need rather than profit," particularly in the U.S.? Would you support such a reprioritizing? How?
- Have you seen Sicko? Care to share a review? Or of Michael Moore's latest doc'y?
==Also of note:
To enhance your SuperBowl experience-