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Bioethics Blogs

Beauty’s Knowledge: Hawthorne’s Moral Fable “Rappaccini’s Daughter” by Leo Coleman

Nathaniel Hawthorne’s story “Rappaccini’s Daughter” is a nineteenth-century moral fable that sets the fruits of experimental knowledge against obligations to humanity, and stages a dramatic encounter between these two apparent goods. In many ways, the moral it offers seems familiar, and could be recognized by anyone with even a passing familiarity with contemporary bioethical debates. It features a mad scientist’s garden, a gorgeous but poisonous plant of his creation, and a lovely daughter who tends to his terrible plants, and who is—like the plant—both attractive and potentially infectious. The daughter receives the attentions of a naïve medical student, and she falls in love with him, but their fate is shadowed by the actions of not one but two bad scientist father-figures who experiment upon the younger characters and try to shape their (biological) destinies without their knowledge. But Hawthorne’s story does not simply anticipate, in an antique and allegorical way, contemporary defenses of human dignity and nature’s inviolability. Nor does it merely rehearse, with its private garden and unknowingly experimented-upon subjects, a Lockean notion of our own inevitable and natural possession of our bodies and the fruits of our lives and labor.

Hawthorne’s story puts the experimental subject at the center of its moral allegory, suffering both hopes and fears provoked by her own mutability, her own biological plasticity. That is, his titular character is no innocent pawn in the hands of the great scientist: she is an artificial being—grafted and forced—and deeply morally and biologically transformed from the very beginning; but because of this she is also able to reflect on her relations with others and her environment, and to mark (in this case, tragically) a new ethical frontier.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Web Roundup: Opioids as a National Emergency by Katherine Warren

After several years in the headlines, the U.S. opioid crisis has been in the news this summer as the federal government debates its status as a national emergency. On July 31st, the President’s Commission on Combating Drug Addiction and the Opioid Crisis, led by New Jersey Governor Chris Christie, released its interim report on the state of the U.S. opioid crisis. As their “first and most urgent recommendation” for President Trump, the members of the Commission urged him to “[d]eclare a national emergency under either the Public Health Service Act or the Stafford Act.”

The report emerged just as federal officials published a widely cited study showing that 91.8 million (37.8%) U.S. adults had used prescription opioids in 2015, 11.5 million (4.7%) had misused them, and 1.9 million (0.8%) had an opioid use disorder. Nearly half (40.8%) of the individuals who had misused opioids had obtained them for free from family or friends. News reports on the study also declared that “[o]pioid abuse started as a rural epidemic” of “hillbilly heroin” but has now become a “national one.”

President Trump did not initially declare a national opioid emergency, vowing instead in a briefing on August 8th to focus on prevention, increased law enforcement and drug-related prosecutions, and more aggressive policing of U.S. borders. By August 10th, after significant criticism, Trump told reporters, “We’re going to draw it up and we’re going to make it a national emergency.” As of September 1st, the Trump administration had yet to take the legal steps to formally declare a national emergency around the opioid crisis.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Robotic Exoskeleton Could Be Right Step Forward for Kids with Cerebral Palsy

More than 17 million people around the world are living with cerebral palsy, a movement disorder that occurs when motor areas of a child’s brain do not develop correctly or are damaged early in life. Many of those affected were born extremely prematurely and suffered brain hemorrhages shortly after birth. One of the condition’s most common symptoms is crouch gait, which is an excessive bending of the knees that can make it difficult or even impossible to walk. Now, a new robotic device developed by an NIH research team has the potential to help kids with cerebral palsy walk better.

What’s really cool about the robotic brace, or exoskeleton, which you see demonstrated above, is that it’s equipped with computerized sensors and motors that can detect exactly where a child is in the walking cycle—delivering bursts of support to the knees at just the right time. In fact, in a small study of seven young people with crouch gait, the device enabled six to stand and walk taller in their very first practice session!

For people with cerebral palsy, crouch gait is now treated with a variety of approaches, often including wearing orthotic ankle braces that help to stabilize their legs. Still, about half of kids with cerebral palsy can’t walk by early adulthood. Their muscles simply can’t keep up with their growing bodies.

That’s led to development of many robotic training devices, though most are still restricted to use in a supervised clinical setting. In the new study, led by Thomas Bulea at the NIH Clinical Center in Bethesda, MD, the team wanted to develop a wearable system for potential home use to help keep more kids walking as they grow into adulthood.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Beginning Your Medical Journey: Advice for First-Year Students

By Steve Goldstein

On August 19, 2017, I offered the keynote address at the Loyola University Chicago Stritch School of Medicine Class of 2021 White Coat Ceremony.  It was an honor to address this class, my first as dean.  I had welcomed the students during orientation when they were absorbing a great deal—rules, responsibilities, schedules, safety, organization– and met with them during discussions of a book we all read recounting the rich, complex career of pediatrician– events when they were in a focused, serious mood.  This day, however, the student’s were with their families and excited, bolstered by well-deserved pride, and filled with the shared mission of improving the world through the practice of medicine.  Below are the thoughts I shared in my address to the class as they began their formal training as first-year medical students…

Family, friends, alumni, faculty, and staff, I welcome you to the 2017 Loyola University Chicago Stritch School of Medicine White Coat Ceremony.  Class of 2021, I welcome you to the beginning of your careers in medicine.  I am delighted to be with you today.

As the students already know, the Class of 2021 is my first as dean– so, we begin this journey together.

You also know that I am a pediatrician, so you will forgive me if I continue to offer some practical guidance as I did last week– based on 40 years of experience since I sat where you are now:

Lesson one: no one is born an adult.
The corollary is this: no physician begins by being fully trained.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Chess Study Revives Debate Over Cognition-Enhancing Drugs

August 17, 2017

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About a decade ago, reports filled the general and scientific media about the illicit use of such CEs as methylphenidate, a stimulant used to treat attention-deficit/hyperactivity disorder (ADHD), and modafinil, a wakefulness agent used to treat narcolepsy, sleep apnea, and shift work disorder, by students and others who were taking them to improve performance on examinations or in the workplace. There were stories about the risks and ethics of such behavior, countered by calls from some neuroscientists for a more open mind about the drugs and their positive side. The field of brain augmentation was even given a chic new name, cosmetic neurology.

While media attention has since waned, the underground use of CEs seemingly has not. A 2013 survey found that 19.9% of the 1105 German surgeons who responded admitted to having taken a prescription or illicit drug to enhance cognition at least once. Another study found that 61.8% of undergraduates at the University of Maryland had been offered prescription stimulants for nonmedical purposes, most of them by friends with prescriptions, and 31% had used them.

And the trend “hasn’t peaked yet,” noted Barbara Sahakian, DSc, a professor of clinical neuropsychology at the University of Cambridge who investigates the effectiveness of CEs in treating the cognitive impairment associated with certain psychiatric disorders.

… Read More

Image: Von M.R.W.HH in der Wikipedia auf Deutsch – Übertragen aus de.wikipedia nach Commons., Gemeinfrei, https://commons.wikimedia.org/w/index.php?curid=1918499

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The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Few Americans Plan For End-of-Life Decisions, Even If They Are Sick

Michael S. Dauber, MA, GBI Visiting Scholar

Many moral dilemmas faced by clinicians, patients, and their families arise when individuals have not made plans for the end of their lives or discussed their wishes with their loved ones. To prevent and mitigate these issues, ethicists have suggested for decades that individuals should complete documents such as advanced directives like living wills (legal documents that indicate one’s wishes for interventions like intubation and cardiopulmonary resuscitation (CPR)), and to name a healthcare proxy (an individual to make decisions on one’s behalf in the event one becomes unable). Such measures tend to make it easier for individuals to address moral dilemmas in practice and to determine the ethically appropriate surrogate decision maker for a patient.

According to a recent study published in Health Affairs, few Americans have taken either of these measures. Researchers compiled results from over 150 studies of end-of-life planning measures and determined that only 36.7 percent of those surveyed had completed some sort of advanced directive, with 29.3 percent of those individuals completing living wills and 33 percent empowering a healthcare proxy. The study also found that 42 percent of individuals aged 65 or older had completed some sort of advanced directive, as opposed to 32 percent of individuals younger than 65.

There are several reasons why individuals may be hesitant to complete healthcare proxies. Many young people may feel they can put off decisions about care at the end of their lives because such matters are comparatively unlikely to occur in the short term.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Whatever Happened to Long-Term Care Reform?

From the Trenches: A Prescription for Change

I have enjoyed looking at the pictures of protestors being arrested in our nation’s capital. I concur with many commentators who credit the civil disobedience of the protestors – many of whom are members of the disability rights activist group ADAPT – with the defeat of the Senate bill to abolish the Affordable Care Act. It’s also been fun because I know so many people in the photos.

The Affordable Care Act was a massive piece of legislation. The complexities and moving parts are best understood by people who have very closely followed or implemented the law. I generally think of the ACA as three things:

1. Reform of the private insurance market with the goal of providing greater access to insurance coverage;

2. Changes to Medicare, such as closing the prescription drug donut hole; and

3. Changes to Medicaid. 

Mike Oxford, Executive Director for Policy at the Topeka Independent Living Resource Center and a member of the national chapter of ADAPT, was one of many who protested against the Senate bill to repeal the Affordable Care Act.

Community Services Optional?

The Medicaid issue that has drawn the most attention is the matter of expanding access, appropriately called “Medicaid expansion.” But the law contains other Medicaid provisions as well. It provides incentives for states to continue to “re-balance” their systems of providing long-term care. “Re-balance” is often mentioned in quotation marks because states were never in balance. Nonetheless, through the ACA, states were provided additional federal matching funds if they would transfer more long-term care to community services and away from institutions, such as nursing homes.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Whatever Happened to Long-Term Care Reform?

From the Trenches: A Prescription for Change

I have enjoyed looking at the pictures of protestors being arrested in our nation’s capital. I concur with many commentators who credit the civil disobedience of the protestors – many of whom are members of the disability rights activist group ADAPT – with the defeat of the Senate bill to abolish the Affordable Care Act. It’s also been fun because I know so many people in the photos.

The Affordable Care Act was a massive piece of legislation. The complexities and moving parts are best understood by people who have very closely followed or implemented the law. I generally think of the ACA as three things:

1. Reform of the private insurance market with the goal of providing greater access to insurance coverage;

2. Changes to Medicare, such as closing the prescription drug donut hole; and

3. Changes to Medicaid. 

Mike Oxford, Executive Director for Policy at the Topeka Independent Living Resource Center and a member of the national chapter of ADAPT, was one of many who protested against the Senate bill to repeal the Affordable Care Act.

Community Services Optional?

The Medicaid issue that has drawn the most attention is the matter of expanding access, appropriately called “Medicaid expansion.” But the law contains other Medicaid provisions as well. It provides incentives for states to continue to “re-balance” their systems of providing long-term care. “Re-balance” is often mentioned in quotation marks because states were never in balance. Nonetheless, through the ACA, states were provided additional federal matching funds if they would transfer more long-term care to community services and away from institutions, such as nursing homes.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

NIH Family Members Giving Back: Diane Baker

Caption: My wife Diane inspired me and my staff to volunteer to make dinner for patients and their families at The Children’s Inn at NIH.
Credit: NIH Record

My blog usually celebrates biomedical advances made possible by NIH-supported research. But every August, I like to try something different and highlight an aspect of the scientific world that might not make headlines. This year, I’d like to take a moment to pay tribute to just a few of the many NIH family members around the country who, without pay or fanfare, freely give of themselves to make a difference in their communities.

I’d like to start by recognizing my wife Diane Baker, a genetic counselor who has always found time during her busy career to volunteer. When I was first being considered as NIH director, we had lots of kitchen table discussions about what it might mean for us as a couple. We decided to approach the position as a partnership. Diane immediately embraced the NIH community and, true to her giving spirit, now contributes to some wonderful charities that lend a welcome hand to patients and their loved ones who come to the NIH Clinical Center here in Bethesda, MD.

As a genetic counselor, Diane spent many years working with pediatric patients and their families at the University of Michigan, Ann Arbor. Now she puts this real-world experience to great use as a board member for the Friends of Patients at the NIH. This dedicated group provides a support system for patients participating in an NIH clinical trial and their families.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Things Which Have Once Been Conjoined: Science Fiction, Contagion, and Magic in the Age of Social Media by Samuel Gerald Collins

There are many interesting formations that might be called networked phenomena. Homophily and the tendency towards triad closure. Scott Feld’s Rule (I’m more likely to make friends with someone who has more friends than me). Small world phenomena (those 6 degrees of separation). “The Strength of Weak Ties” (reportedly the most cited sociology paper in history). In all, a series of social forms that complicates typical binarisms like individual versus group.

All of these have their positive and negative sides, but few networked phenomena have been met with more ambivalence than that of contagion, the idea that things (memes, viral videos, fashion) spread from person to person in a way that is similar to an epidemic; that is, people believe certain things or participate in certain behaviors without necessarily having “decided” to do so. Instead, the chances of “contracting” an idea, a fashion, or a new technology come down to the structural position in a network—a question, for example, of k-threshold models, where the chance of contagion depends upon the topology of connections vis-à-vis other infected nodes.

Given its identification with epidemiological contagion, it is not surprising that social contagion brings with it a negative valence, conjuring up fears of loss of autonomy, of being reduced to “hosts” for the “viral” propagation of information in a network. Contagion is at the heart of the fear and fascination of the zombie. It is also part of the latest panic in politics, one that centers on a vision of an electorate easily manipulated through fake news propagated through social media.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.