Tag: patients

Bioethics Blogs

Federal “Right to Try” Legislation – perpetuating a misguided skepticism towards the FDA

Cross-posted from the CRITical Thinking blog. By Jeanie Kim The “right to try” (RTT) movement presents a narrative that pits patients against the FDA. Supporters of RTT, powered by the libertarian Goldwater Institute, have pushed for laws that let terminally ill patients bypass … Continue reading

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

New clinical celular trial for treatment of Parkinson’s disease injecting stemcells in the patient brain

A first step to a Parkinson treatment with stem cells.

The first clinical trial conducted in China (see HERE) to treat Parkinson’s disease and age-related macular degeneration and the second most common neurodegenerative disorder is to be launched shortly. In the next few months, surgeons from the city of Zhengzhou have planned to conduct a clinical trial to inject neurons derived from human stem cells into the brain of patients with Parkinson’s disease. This trial would be the first in the world to treat this disease with stem cells obtained from human embryos. Some researchers who work on Parkinson’s disease, however, worry that the trials might be misguided. In a second trial, a different team from the same city also hopes to use cells derived from human embryonic stem cells to treat age-related macular degeneration. Both experiments will be the first conducted in China since these practices were regulated in 2015. From an ethical point of view, it should be highlighted that both trials start from the use of human embryonic stem cells, with the difficulties that this entails, because it must not be forgotten that human embryos have to be destroyed to obtain them, which ethically cannot be justified from any point of view.

La entrada New clinical celular trial for treatment of Parkinson’s disease injecting stemcells in the patient brain aparece primero en Bioethics Observatory.

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

Politics of Pain: Investigating the Ethics of Palliative Care as a Global Human Right

by Alix Masters

Within the last decade, strides have been made in the field of global health policy to extend the reaches of palliative care universally.  In 2014, the World Health Organization formally declared palliative care a global human right.[1] This development in global health policy is a positive one when we consider the medical politics of pain relief across racial difference.  Both in the United States and abroad, there is a long medical history of discriminatory practices against certain groups of people with regard to pain management—including withholding necessary pain medication altogether.  Therefore, in many ways the declaration of palliative care as a human right is a necessary step in ensuring all peoples, regardless of identity, have their pain taken seriously by the medical establishment and have their comfort made a medical priority.  When we consider how different cultures negotiate beliefs around death and pain relief, however, the issue of palliative care as a universal human right becomes more complex.  For example, countries with strong histories of Buddhist thought and culture have traditionally opposed the ideology of palliative care.[26]  In Buddhism, suffering is considered an inextricable part of life and masking this suffering through medical intervention is looked down upon.[2]  For example, Vietnam, a country with a culture strongly imbued with Eastern Buddhist values, has a long history of rejecting palliative care and pain medications in general.[26]  Due to this, the World Health Organization’ declaration that palliative care is a universal human right could also be understood as a Western organization blatantly ignoring Buddhist cultural traditions.  While the declaration of palliative care as a human right is important progress in many ways, it is also important that Western medicine not impose our values globally without consideration for the complex histories and belief systems of diverse cultures.

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

“She Can’t Help The Choices She Makes”

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STUDENT VOICES | CHYNN PRIZE FIRST-PLACE WINNER

By Madeleine Cardona

I will never forget the day my mother got diagnosed. I could swear that just yesterday I was thirteen years old waiting anxiously to be called in from the waiting room of some fancy New York State doctor’s office. I was young, but I had some idea of what was going on. I knew my parents and I were there because they were going through a divorce and fighting for custody of me. What I did not know was that we were about to endure a court-ordered psychiatric evaluation and that the results were going to change my life forever.

“Madeleine, your mom is very sick,” the psychiatrist attempted to explain to me. I did not understand. I did not know a sick person could look perfectly healthy. “It’s not a physical sickness, it’s in her head. She has a mental disorder called Paranoid Schizophrenia.” She went on using big words to explain how my mother’s brain “wasn’t like other people’s brains.” I sat there listening closely, hanging on every word the woman was saying to me. “She can’t help the choices that she makes, it’s not her fault that she is the way that she is. She needs help.” Every day since that day in the doctor’s office, that remark replays in my head over and over. “She can’t help the choices she makes.”

That is what gave me the most trouble. I sat around for years and years watching the choices that my mother was making, unable to intervene.

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

Harvey and Irma: Bioethics in Natural Disasters

by Craig Klugman, Ph.D.

This is a time of disaster. Last week Hurricane Harvey devastated Southeast Texas, a place where I did my doctoral studies. This week we are awaiting Hurricane Irma, the strongest hurricane to head toward South Florida in 25 years. My family lays in the path of that coming storm. I first became interested in natural disaster in 1989 when my college campus was jolted by a 7.1 earthquake in Northern California.

Bioethics has a role in responding to and preparing for these natural disasters. Most every state, large city and county, and most hospitals have been working on crisis standards of care plans. In 2009 and again in 2012, the Institute of Medicine recommended governments to undertake such planning. Many of us working in bioethics have been involved in these efforts. More specifically, we have been involved with developing ethical frameworks for decision-making, policy-making, and operations during emergency planning.

I worked with Texas during its planning for pandemic flu and for the last 3 years have been part of the ethics subcommittee of Illinois’ workgroup, most recently as chair. Similar groups have produced excellent reports in many places such as Delaware, North Carolina, Michigan, Minnesota, Tennessee, Texas and Toronto. They offer guidance and justification for a varied set of guiding principles and ethical frameworks. All of them hold certain core ideals in common.

First, all of the reports agree that transparency and open communication is essential. Planning needs to involve not only government officials, but also community members.

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

In Survey, Docs Say Unneeded Medical Care Is Common

September 7, 2017

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A national survey of more than 2,000 doctors across multiple specialties finds that physicians believe overtreatment is common and primarily perpetuated by fear of malpractice, as well as patient demand and some profit motives.

A report on the findings, published today in PLOS ONE, highlights physicians’ perspectives on unnecessary health care practices and the potential causes and solutions.

“Unnecessary medical care is a leading driver of the higher health insurance premiums affecting every American,” says Martin Makary, professor of surgery and health policy at the Johns Hopkins University School of Medicine and the paper’s senior author.

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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 Blogs

Creative Minds: Exploring the Role of Immunity in Hypertension

Meena Madhur / Credit: John Russell

If Meena Madhur is correct, people with hypertension will one day pay as much attention to their immune cell profiles as their blood pressure readings. A physician-researcher at Vanderbilt University School of Medicine, Nashville, Madhur is one of a growing number of scientists who thinks the immune system contributes to—or perhaps even triggers—hypertension, which increases the risk of stroke, heart disease, kidney disease, and other serious health problems.

About one of every three adult Americans currently have hypertension, yet a surprising number don’t know they have it and less than half have their high blood pressure under control—leading many health experts to refer to the condition as a “silent killer”[1,2]. For many folks, blood pressure control can be achieved through lifestyle changes, such as losing weight, exercising, limiting salt intake, and taking blood pressure medicines prescribed by their health-care provider. Unfortunately, such measures don’t work for everyone, and some people continue to suffer damage to their kidneys and blood vessels from poorly controlled hypertension.

Madhur wants to know whether the immune system might be playing a role, and whether this might hold some clues for developing new, more targeted ways of treating high blood pressure. To get such answers, this practicing cardiologist will use her 2016 NIH Director’s New Innovator Award to conduct sophisticated, single-cell analyses of the immune systems of people with and without hypertension. Her goal is to produce the most comprehensive catalog to date of which human immune cells might be involved in hypertension.

Back in the 1960s, animal studies provided the first indication that the immune system might play a role in hypertension.

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

Lifetime Achievement in Bioethics

Center for Practical Bioethics Founding Executive Myra Christopher Honored by American Society for Bioethics and Humanities 

Forty years ago, a young Johnson County, Kansas, homemaker stood by her mother’s grave and promised to spend the rest of her life working to ensure that those living with serious illness could have their wishes honored and values respected. That same year, her college philosophy professor introduced her to a new “movement” called bioethics that advocated for patients to actively engage in their own care. Following graduation, from 1984 through 2011, she served as founding executive director of the Center for Practical Bioethics in Kansas City.

On October 20, 2017, Myra Christopher’s four-decade journey will culminate in her acceptance of the 2017 Lifetime Achievement Award from the 1,800-member American Society for Bioethics and Humanities (ASBH) at the national association’s conference hosted in Kansas City.

Early in Christopher’s career at the Center for Practical Bioethics, she and her founding board faced challenges like court reporters, judges and lawyers appearing in hospital rooms to intervene on end-of-life decisions. Hospice care was, for the most part, still rare.

Unlike the half dozen academia-based bioethics centers that existed at the time, the vision for the Center was to create an independent, free-standing nonprofit that converts bioethics theory into services and resources to serve real patients, families, providers and policymakers facing real-life healthcare issues and crises in real time.

In recognition of Christopher’s role in achieving this vision, ASBH professionals from clinical and academic settings along with those from medical humanities throughout the country will present her with its most prestigious honor in afternoon ceremonies at the Sheraton Crown Center Hotel in Kansas City, Missouri.

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

Paolo Macchiarini, Fraud, and Oversight: A Case of Falsified Stem Cell Research

by Michael S Dauber, GBI Visiting Scholar

According to a recent story by John Rasko and Carl Power in The Guardian, surgeon Paolo Macchiarini’s research in artificial windpipes, previously hailed as pioneering medicine with the promise to save many lives, has been exposed as a fraud. Miacchiarini had previously received public praise for creating artificial windpipes by grafting stem cells onto plastic frames, which allowed him to “grow” new trachea for his patients.

While much of the scientific community was eager to believe Miaccharini had made significant breakthroughs, not everyone was convinced. According to a Swedish TV series called Experimenten, most of Miaccharini’s patients died within a few years of their procedures, and it was unclear that the experimental surgeries actually helped: in fact, they may have made matters much worse. Deeper investigation revealed that Macchiarini had actually falsified much of his data, and that institutional checks that normally prevent fraudulent individuals from being hired had been ignored. For example, according to an “external inquiry,” he was hired by the Karolinska Institute in 2010 despite various fraudulent, concerning, and questionable information on his resume (including a claim from a reference that he had been “blocked from a professorship in Italy”). The report also found that there had been inappropriate contact between Macchiarini and the Karolinska Institute’s Vice-Chancellor during his recruitment.

Even more troubling, the Institute failed to comply with government regulations designed to ensure research and clinical interventions are practiced ethically. According to Rasko and Power, Macchiarini failed to test his artificial airways in animals before implanting them in three human patients, and he did not apply for approval from an institutional review board or other ethics committee, despite the fact that Stockholm’s board was housed at the Institute.

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.