Welcome to the Nexus of Ethics, Psychology, Morality, Philosophy and Health Care

Welcome to the nexus of ethics, psychology, morality, technology, health care, and philosophy
Showing posts with label Disease. Show all posts
Showing posts with label Disease. Show all posts

Monday, November 2, 2020

What We’re Not Talking about When We Talk about Addiction

Hanna Pickard
The Hastings Center
Originally posted 28 Aug 20


The landscape of addiction is dominated by two rival models: a moral model and a model that characterizes addiction as a neurobiological disease of compulsion. Against both, I offer a scientifically and clinically informed alternative. Addiction is a highly heterogeneous condition that is ill-characterized as involving compulsive use. On the whole, drug consumption in addiction remains goal directed: people take drugs because drugs have tremendous value. This view has potential implications for the claim that addiction is, in all cases, a brain disease. But more importantly, it has implications for clinical and policy interventions. To help someone overcome addiction, you need to understand and address why they persist in using drugs despite negative consequences. If they are not compelled, then the explanation must advert to the value of drugs for them as an individual. What blocks us from acknowledging this reality is not science but fear: that it will ignite moralism about drugs and condemnation of drug users. The solution is not to cleave to the concept of compulsion but to fight moralism directly.

Friday, August 30, 2019

Cryonics: Medicine, Or The Modern Mummy?

Patrick Lin
Futuristic cryo-pod. Photocredit: GettyForbes.com
Originally posted July 8, 2019

Here is an excerpt:

Meanwhile, others argued that death is a natural and necessary part of the circle of life.  Ecologically, keeping people around long past their “natural lives” may upset an already fragile balance, potentially exacerbating overpopulation, resource consumption, waste, and so on.

This is to suggest that cryonics isn’t just a difference in degree from, say, saving heart-attack victims, but it becomes a difference in kind.  It’s not an incremental improvement, as medicine makes in slowly raising average lifespans, but it's potentially a radical disruption with major systemic effects.

Culturally, Joseph Weizenbaum— who was a MIT computer science professor and creator of ELIZA—wrote, “Our death is the last service we can provide to the world:  Would we not go out of the way, the following generations would not need to re-create human culture.  Culture would become fixed, unchangeable and die.  And with the death of culture, humanity would also perish.”

Beyond external effects, the desire for more life may express bad character.  Wanting more than one’s fair share—of life or anything else—seems egotistical and expresses ingratitude for what we already have.  If not for death, we might not appreciate our time on earth.  We appreciate many things, such as beauty and flowers, not despite their impermanence but because of it.

Wednesday, July 31, 2019

US Senators Call for International Guidelines for Germline Editing

Jef Akst
Originally published July 16, 2019

Here is an excerpt:

“Gene editing is a powerful technology that has the potential to lead to new therapies for devastating and previously untreatable diseases,” Feinstein says in a statement. “However, like any new technology, there is potential for misuse. The international community must establish standards for gene-editing research to develop global ethical principles and prevent unethical researchers from moving to whichever country has the loosest regulations.” (Editing embryos for reproductive purposes is already illegal in the US.)

In addition, the resolution makes clear that the trio of senators “opposes the experiments that resulted in pregnancies using genome-edited human embryos”—referring to the revelation last fall that researcher He Jiankui had CRISPRed the genomes of two babies born in China.

The info is here.

Monday, July 29, 2019

Experts question the morality of creating human-monkey ‘chimeras’

Kay Vandette
Originally published July 5, 2019

Earlier this year, scientists at the Kunming Institute of Zoology of the Chinese Academy of Sciences announced they had inserted a human gene into embryos that would become rhesus macaques, monkeys that share about 93 percent of their DNA with humans. The research, which was designed to give experts a better understanding of human brain development, has sparked controversy over whether this type of experimentation is ethical.

Some scientists believe that it is time to use human-monkey animals to pursue new insights into the progression of diseases such as Alzheimer’s. These genetically modified monkeys are referred to as chimeras, which are named after a mythical animal that consists of parts taken from various animals.

A resource guide on the science and ethics of chimeras written by Yale University researchers suggests that it is time to “cautiously” explore the creation of human-monkey chimeras.

“The search for a better animal model to stimulate human disease has been a ‘holy grail’ of biomedical research for decades,” the Yale team wrote in Chimera Research: Ethics and Protocols. “Realizing the promise of human-monkey chimera research in an ethically and scientifically appropriate manner will require a coordinated approach.”

A team of experts led by Dr. Douglas Munoz of Queen’s University has been studying the onset of Alzheimer’s disease in monkeys by using injections of beta-amyloid. The accumulation of this protein in the brain is believed to kill nerve cells and initiate the degenerative process.

The info is here.

Thursday, March 14, 2019

An ethical pathway for gene editing

Julian Savulescu & Peter Singer
First published January 29, 2019

Ethics is the study of what we ought to do; science is the study of how the world works. Ethics is essential to scientific research in defining the concepts we use (such as the concept of ‘medical need’), deciding which questions are worth addressing, and what we may do to sentient beings in research.

The central importance of ethics to science is exquisitely illustrated by the recent gene editing of two healthy embryos by the Chinese biophysicist He Jiankui, resulting in the birth of baby girls born this month, Lulu and Nana. A second pregnancy is underway with a different couple. To make the babies resistant to human immunodeficiency virus (HIV), He edited out a gene (CCR5) that produces a protein which allows HIV to enter cells. One girl has both copies of the gene modified (and may be resistant to HIV), while the other has only one (making her still susceptible to HIV).

He Jiankui invited couples to take part in this experiment where the father was HIV positive and the mother HIV negative. He offered free in vitro fertilization (IVF) with sperm washing to avoid transmission of HIV. He also offered medical insurance, expenses and treatment capped at 280,000 RMB/CNY, equivalent to around $40,000. The package includes health insurance for the baby for an unspecified period. Medical expenses and compensation arising from any harm caused by the research were capped at 50,000 RMB/CNY ($7000 USD). He says this was from his own pocket. Although the parents were offered the choice of having either gene‐edited or ‐unedited embryos transferred, it is not clear whether they understood that editing was not necessary to protect their child from HIV, nor what pressure they felt under. There has been valid criticism of the process of obtaining informed consent.4 The information was complex and probably unintelligible to lay people.

The info is here.

Friday, January 4, 2019

Beyond safety questions, gene editing will force us to deal with a moral quandary

Josephine Johnston
Originally published November 29, 2018

Here is an excerpt:

The majority of this criticism is motivated by major concerns about safety — we simply do not yet know enough about the impact of CRISPR-Cas9, the powerful new gene-editing tool, to use it create children. But there’s a second, equally pressing concern mixed into many of these condemnations: that gene-editing human eggs, sperm, or embryos is morally wrong.

That moral claim may prove more difficult to resolve than the safety questions, because altering the genomes of future persons — especially in ways that can be passed on generation after generation — goes against international declarations and conventions, national laws, and the ethics codes of many scientific organizations. It also just feels wrong to many people, akin to playing God.

As a bioethicist and a lawyer, I am in no position to say whether CRISPR will at some point prove safe and effective enough to justify its use in human reproductive cells or embryos. But I am willing to predict that blanket prohibitions on permanent changes to the human genome will not stand. When those prohibitions fall — as today’s announcement from the Second International Summit on Human Genome Editing suggests they will — what ethical guideposts or moral norms should replace them?

The info is here.

Friday, November 2, 2018

Health care, disease care, or killing care?

Hugo Caicedo
Harvard Blogs
Originally published October 1, 2018

Traditional medical practice is rooted in advanced knowledge of diseases, their most appropriate treatment, and adequate proficiency in its applied practice. Notably, today, medical treatment does not typically occur until disease symptoms have manifested. While we now have ways to develop therapies that can halt the progression of some symptomatic diseases, symptomatic solutions are not meant to serve as a cure of disease but palliative treatment of late-stage chronic diseases.

The reactive approach in most medical interventions is magnified in that medicine is prone to errors. In November of 1999, the U.S. National Academy of Science, an organization representing the most highly regarded scientists and physician researchers in the U.S., published the report To Err is Human.

The manuscript noted that medical error was a leading cause of patient deaths killing up to 98,000 people in the U.S. every year. One hypothesis that came up was that patient data was being poorly collected, aggregated, and shared among different hospitals and even within the same health system. Health policies such the Health Information Technology for Economic and Clinical Health Act (HITECH) in 2009 and the Affordable Care Act (ACA) in 2010, primarily focused on optimizing clinical and operational effectiveness through the use of health information technology and expansion of government insurance programs, respectively. However, they did not effectively address the issue of medical errors such as poor judgment, mistaken diagnoses, inadequately coordinated care, and incompetent skill that can directly result in patient harm and death.

The blog post is here.

Tuesday, October 2, 2018

For the first time, researchers will release genetically engineered mosquitoes in Africa

Ike Swetlitz
Originally posted September 5, 2018

The government of Burkina Faso granted scientists permission to release genetically engineered mosquitoes anytime this year or next, researchers announced Wednesday. It’s a key step in the broader efforts to use bioengineering to eliminate malaria in the region.

The release, which scientists are hoping to execute this month, will be the first time that any genetically engineered animal is released into the wild in Africa. While these particular mosquitoes won’t have any mutations related to malaria transmission, researchers are hoping their release, and the work that led up to it, will help improve the perception of the research and trust in the science among regulators and locals alike. It will also inform future releases.

Teams in three African countries — Burkina Faso, Mali, and Uganda — are building the groundwork to eventually let loose “gene drive” mosquitoes, which would contain a mutation that would significantly and quickly reduce the mosquito population. Genetically engineered mosquitoes have already been released in places like Brazil and the Cayman Islands, though animals with gene drives have never been released in the wild.

The info is here.

Friday, August 17, 2018

Genetically modified babies given go ahead by UK ethics body

Ian Sample
The Guardian
Originally posted July 17, 2018

The creation of babies whose DNA has been altered to give them what parents perceive to be the best chances in life has received a cautious green light in a landmark report from a leading UK ethics body.

The Nuffield Council on Bioethics said that changing the DNA of a human embryo could be “morally permissible” if it was in the future child’s interests and did not add to the kinds of inequalities that already divide society.

The report does not call for a change in UK law to permit genetically altered babies, but instead urges research into the safety and effectiveness of the approach, its societal impact, and a widespread debate of its implications.

“It is our view that genome editing is not morally unacceptable in itself,” said Karen Yeung, chair of the Nuffield working group and professor of law, ethics and informatics at the University of Birmingham. “There is no reason to rule it out in principle.”

The info is here.

Friday, August 10, 2018

Is compassion fatigue inevitable in an age of 24-hour news?

Elisa Gabbert
The Guardian
Originally posted August 2, 2018

Here is an excerpt:

Not long after compassion fatigue emerged as a concept in healthcare, a similar concept began to appear in media studies – the idea that overexposure to horrific images, from news reports in particular, could cause viewers to shut down emotionally, rejecting information instead of responding to it. In her 1999 book  Compassion Fatigue: How the Media Sell Disease, Famine, War and Death, the journalist and scholar Susan Moeller explored this idea at length. “It seems as if the media careen from one trauma to another, in a breathless tour of poverty, disease and death,” she wrote. “The troubles blur. Crises become one crisis.” The volume of bad news drives the public to “collapse into a compassion fatigue stupor”.

Susan Sontag grappled with similar questions in her short book Regarding the Pain of Others, published in 2003. By “regarding” she meant not just “with regard to”, but looking at: “Flooded with images of the sort that once used to shock and arouse indignation, we are losing our capacity to react. Compassion, stretched to its limits, is going numb. So runs the familiar diagnosis.” She implies that the idea was already tired: media overload dulls our sensitivity to suffering. Whose fault is that – ours or the media’s? And what are we supposed to do about it?

By Moeller’s account, compassion fatigue is a vicious cycle. When war and famine are constant, they become boring – we’ve seen it all before. The only way to break through your audience’s boredom is to make each disaster feel worse than the last. When it comes to world news, the events must be “more dramatic and violent” to compete with more local stories, as a 1995 study of international media coverage by the Pew Research Center in Washington found.

The information is here.

Monday, July 2, 2018

What Does an Infamous Biohacker’s Death Mean for the Future of DIY Science?

Kristen Brown
The Atlantic
Originally posted May 5, 2018

Here are two excerpts:

At just 28, Traywick was among the most infamous figures in the world of biohacking—the grandiose CEO of a tiny company called Ascendance Biomedical whose goal was to develop and test new gene therapies without the expense and rigor of clinical trials or the oversight of the FDA. Traywick wanted to cure cancer, herpes, HIV, and even aging, and he wanted to do it without having to deal with the rules and safety precautions of regulators and industry standards.

“There are breakthroughs in the world that we can actually bring to market in a way that wouldn’t require us to butt up against the FDA’s walls, but instead walk around them,” Traywick told me the first time I met him in person, during a biotech conference in San Francisco last January.

To “walk around” regulators, Ascendance and other biohackers typically rely on testing products on themselves. Self-experimentation, although strongly discouraged by agencies like the FDA, makes it difficult for regulators to intervene. The rules that govern drug development simply aren’t written to oversee what an individual might do to themselves.


The biggest shame, said Zayner, is that we’ll never get the chance to see how Traywick might have matured once he’d been in the biohacking sphere a little longer.

Whatever their opinion of Traywick, everyone who knew him agreed that he was motivated by an extreme desire to make drugs more widely available for those who need them.

The information is here.

Saturday, February 17, 2018

Fantasy and Dread: The Demand for Information and the Consumption Utility of the Future

Ananda R. Ganguly and Joshua Tasoff
Management Science
Last revised: 1 Jun 2016


We present evidence that intrinsic demand for information about the future is increasing in expected future consumption utility. In the first experiment, subjects may resolve a lottery now or later. The information is useless for decision making but the larger the reward, the more likely subjects are to pay to resolve the lottery early. In the second experiment subjects may pay to avoid being tested for HSV-1 and the more highly feared HSV-2. Subjects are three times more likely to avoid testing for HSV-2, suggesting that more aversive outcomes lead to more information avoidance. In a third experiment, subjects make choices about when to get tested for a fictional disease. Some subjects behave in a way consistent with expected utility theory and others exhibit greater delay of information for more severe diseases. We also find that information choice is correlated with positive affect, ambiguity aversion, and time preference as some theories predict.

The research is here.

Saturday, February 3, 2018

Can We Reimagine Our Approach To Treating Disease?

Siddhartha Mukherjee
TED Talk
Posted December 22, 2017

When it comes to medicine, one rule of thinking has generally prevailed: Have disease, take pill, kill something. But physician Siddhartha Mukherjee says treatment should take a broader approach.

Friday, December 15, 2017

Loneliness Might Be a Killer, but What’s the Best Way to Protect Against It?

Rita Rubin
JAMA. 2017;318(19):1853-1855.

Here is an excerpt:

“I think that it’s clearly a [health] risk factor,” first author Nancy Donovan, MD, said of loneliness. “Various types of psychosocial stress appear to be bad for the human body and brain and are clearly associated with lots of adverse health consequences.”

Though the findings overall are mixed, the best current evidence suggests that loneliness may cause adverse health effects by promoting inflammation, said Donovan, a geriatric psychiatrist at the Center for Alzheimer Research and Treatment at Brigham and Women’s Hospital in Boston.

Loneliness might also be an early, relatively easy-to-detect marker for preclinical Alzheimer disease, suggests an article Donovan coauthored. She and her collaborators recently reported in JAMA Psychiatry that loneliness was associated with a higher cortical amyloid burden in 79 cognitively normal elderly adults. Cortical amyloid burden is being investigated as a potential biomarker for identifying asymptomatic adults with the greatest risk of Alzheimer disease. However, large-scale population screening for amyloid burden is unlikely to be practical.

Regardless of whether loneliness turns out to be a marker for preclinical Alzheimer disease, enough is known about its health effects that physicians need to be able to recognize it, Holt-Lunstad says.

“The cumulative evidence points to the benefit of including social factors in medical training and continuing education for health care professionals,” she and Brigham Young colleague Timothy Smith, PhD, wrote in an editorial.

The article is here.

Friday, December 8, 2017

University could lose millions from “unethical” research backed by Peter Thiel

Beth Mole
ARS Technica
Originally published November 14, 2017

Here is an excerpt:

According to HHS records, SIU (Southern Illinois University) had committed to following all HHS regulations—including safety requirements and having IRB approval and oversight—for all clinical trials, regardless of who funded the trials. If SIU fails to do so, it could jeopardize the $15 million in federal grant money the university receives for its other research.

Earlier, an SIU spokesperson had claimed that SIU didn’t need to follow HHS regulations in this case because Halford was acting as an independent researcher with Rational Vaccines. Thus, SIU had no legal responsibility to ensure proper safety protocols and wasn’t risking its federal funding.

In her e-mail, Buchanan asked for the “results of SIU’s evaluation of its jurisdiction over this research.”

In his response, Kruse noted that SIU was not aware of the St. Kitts trial until October 2016, two months after the trial was completed. But, he wrote, the university had opened an investigation into Halford’s work following his death in June of this year. The decision to investigate was also based on disclosures from American filmmaker Agustín Fernández III, who co-founded Rational Vaccines with Halford, Kruse noted.

The article is here.

Thursday, December 7, 2017

Attica: It’s Worse Than We Thought

Heather Ann Thompson
The New York Times
Originally posted November 19, 2017

Here is an excerpt:

As the fine print of that 1972 article read: “We are indebted to the inmates of the Attica Correctional Facility who participated in this study and to the warden and his administration for their help and cooperation.” This esteemed physician, a man working for two of New York’s most respected hospitals and receiving generous research funding from the N.I.H., was indeed conducting leprosy experiments at Attica.

But which of Attica’s nearly 2,400 prisoners, I wondered, was the subject of experiments relating to this crippling disease, without, as Dr. Brandriss admitted, adequate consent? Might it have been the 19-year-old who was at Attica because he had sliced the top of a neighbor’s convertible? Or a man imprisoned there for more serious offenses? Either way, no jury had sentenced them to being a guinea pig in any experiment relating to a disease as painful and disfiguring as leprosy.

And what about the hundreds of corrections officers and civilian employees working at Attica? Even if no one in this extremely crowded facility was actually exposed to this dreaded disease, one in which “prolonged close contact” with an infected patient is a most serious risk factor, were these state employees at all informed that medical experiments being conducted on the men in their charge?

This is not the first time prisons have allowed secret medical experiments on those locked inside. A 1998 book on Holmesburg Prison in Pennsylvania revealed that a doctor there, Albert Kligman, had been experimenting on prisoners for years. After the book appeared, nearly 300 former prisoners sued him, the University of Pennsylvania and the manufacturers of the substances to which they had been exposed, but none of the defendants was held accountable.

The article is here.

Tuesday, December 5, 2017

Turning Conservatives Into Liberals: Safety First

John Bargh
The Washington Post
Originally published November 22, 2017

Here is an excerpt:

But if they had instead just imagined being completely physically safe, the Republicans became significantly more liberal — their positions on social attitudes were much more like the Democratic respondents. And on the issue of social change in general, the Republicans’ attitudes were now indistinguishable from the Democrats. Imagining being completely safe from physical harm had done what no experiment had done before — it had turned conservatives into liberals.

In both instances, we had manipulated a deeper underlying reason for political attitudes, the strength of the basic motivation of safety and survival. The boiling water of our social and political attitudes, it seems, can be turned up or down by changing how physically safe we feel.

This is why it makes sense that liberal politicians intuitively portray danger as manageable — recall FDR’s famous Great Depression era reassurance of “nothing to fear but fear itself,” echoed decades later in Barack Obama’s final State of the Union address — and why President Trump and other Republican politicians are instead likely to emphasize the dangers of terrorism and immigration, relying on fear as a motivator to gain votes.

In fact, anti-immigration attitudes are also linked directly to the underlying basic drive for physical safety. For centuries, arch-conservative leaders have often referred to scapegoated minority groups as “germs” or “bacteria” that seek to invade and destroy their country from within. President Trump is an acknowledged germaphobe, and he has a penchant for describing people — not only immigrants but political opponents and former Miss Universe contestants — as “disgusting.”

The article is here.

Monday, November 27, 2017

Suicide Is Not The Same As "Physician Aid In Dying"

American Association of Suicidology
Suicide Is Not The Same As "Physician Aid In Dying"
Approved October 30, 2017

Executive summary 

The American Association of Suicidology recognizes that the practice of physician aid in dying, also called physician assisted suicide, Death with Dignity, and medical aid in dying, is distinct from the behavior that has been traditionally and ordinarily described as “suicide,” the tragic event our organization works so hard to prevent. Although there may be overlap between the two categories, legal physician assisted deaths should not be considered to be cases of suicide and are therefore a matter outside the central focus of the AAS.



In general, suicide and physician aid in dying are conceptually, medically, and legally different phenomena, with an undetermined amount of overlap between these two categories. The American Association of Suicidology is dedicated to preventing suicide, but this has no bearing on the reflective, anticipated death a physician may legally help a dying patient facilitate, whether called physician-assisted suicide, Death with Dignity, physician assisted dying, or medical aid in dying. In fact, we believe that the term “physician-assisted suicide” in itself constitutes a critical reason why these distinct death categories are so often conflated, and should be deleted from use. Such deaths should not be considered to be cases of suicide and are therefore a matter outside the central focus of the AAS.

The full document is here.

Tuesday, October 17, 2017

Is it Ethical for Scientists to Create Nonhuman Primates with Brain Disorders?

Carolyn P. Neuhaus
The Hastings Center
Originally published on September 25, 2017

Here is an excerpt:

Such is the rationale for creating primate models: the brain disorders under investigation cannot be accurately modelled in other nonhuman organisms, because of differences in genetics, brain structure, and behaviors. But research involving humans with brain disorders is also morally fraught. Some people with brain disorders experience impairments to decision-making capacity as a component or symptom of disease, and therefore are unable to provide truly informed consent to research participation. Some of the research is too invasive, and would be grossly unethical to carry out with human subjects. So, nonhuman primates, and macaques in particular, occupy a “sweet spot.” Their genetic code and brain structure are sufficiently similar to humans’ so as to provide a valid and accurate model of human brain disorders. But, they are not conferred protections from research that apply to humans and to some non-human primates, notably chimpanzees and great apes. In the United States, for example, chimpanzees are protected from invasive research, but other primates are not. Some have suggested, including in a recent article in Journal of Medical Ethics, that protections like those afforded to chimpanzees ought to be extended to other primates and other animals, such as dogs, as evidence mounts that they also have complex cognitive, social, and emotional lives. For now, macaques and other primates remain in use.

Prior to the discovery of genome editing tools like ZFNs, TALENs, and most recently, CRISPR, it was extremely challenging, almost to the point of prohibitive, to create non-human primates with precise, heritable genome modifications. But CRISPR (Clustered Randomized Interspersed Palindromic Repeat) presents a technological advance that brings genome engineering of non-human primates well within reach.

The article is here.

Monday, September 25, 2017

New class of drugs targets aging to help keep you healthy

Jacqueline Howard
Originally published September 5, 2017

Here is an excerpt:

"In the coming decades, I believe that health care will be transformed by this class of medicine and a whole set of diseases that your parents and grandparents have will be things you only see in movies or read in books, things like age-associated arthritis," said David, whose company was not involved in the new paper.

Yet he cautioned that, while many more studies may be on the horizon for senolytic drugs, some might not be successful.

"One thing that people tend to do is, they tend to overestimate things in the short run but then underestimate things in the long run, and I think that, like many fields, this suffers from that as well," David said.

"It will take a while," he said. "I think it's important to recognize that a drug discovery is among the most important of all human activities ... but it takes time, and there must be a recognition of that, and it takes patience."

The article is here.