Tag: survey

Bioethics Blogs

How Can You Take Part in Clinical Research? Looking Beyond “First in Human”

For a remarkable journey through the front lines of clinical research, I’d like to invite you to join me in viewing First in Human, which premieres tonight at 9 p.m. ET on the Discovery Channel. This three-part docuseries, to be aired August 10, 17, and 24, provides an unprecedented look inside the NIH Clinical Center here in Bethesda, MD, following four of the many brave patients who’ve volunteered to take part in the clinical trials that are so essential to medical breakthroughs.

You’ll learn about what it’s like to take part in an experimental trial of a new treatment, when all standard options have failed. You’ll see that the NIH Clinical Center and its staff are simply amazing. But keep in mind that you don’t have to travel all the way to Bethesda to be part of outstanding, NIH-funded clinical research. In fact, we support clinical trials all across the country, and it’s often possible to find one at a medical institution near your home. To search for a clinical trial that might be right for you or a loved one with a serious medical problem, try going to ClinicalTrials.gov, a web site run by NIH.

According to a national survey conducted a few years ago, 16 percent of respondents reported that they or a family member had participated in a clinical trial [1]. But among adults with cancer, participation in clinical trials is estimated to be only about 3 percent [2].

These numbers need to go up! Not only do clinical trials offer sick people who have no other options a chance to receive experimental treatments that may extend or save their lives, such work is essential for advancing scientific knowledge in ways that will benefit the health of future generations.

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

Ethics Committees Should Have Standards in Preparing New Members

Guest Post: Danish Zaidi and Jennifer Kesselheim
Paper: Assessment of orientation practices for ethics consultation at Harvard Medical School-affiliated hospitals

Ethics advisory committees (EACs), or clinical ethics committees, fulfill an important role in hospitals, providing ethics consultation, contributing to hospital-wide policies, and educating staff on ethical dimensions of medical practice. Our study built upon a central question: what qualifies one to serve on these sorts of committees? It’s a question with added relevance to us as authors: Danish Zaidi was part of the inaugural class of the Harvard Medical School Master of Bioethics program and Jennifer Kesselheim is an EAC co-chair and the founding director of the Harvard Medical School Master of Medical Sciences (MMSc) in Medical Education program. We studied how EACs recruit and educate members of their committees. In particular, what orientation practices were use in educating new members of EACs and how did members perceive confidence were member in fulfilling their duties on the other end of their “orientation”?

In recent years, the American Society for Bioethics & Humanities (ASBH) has made efforts to improve and standardize practices in ethics consultation across medical institutions. The ASBH has published two foundational books regarding ethics consultation and recently their Board of Directors approved the development of a healthcare ethics consultation (HCEC) certification program. Such efforts allude to a desire for standards in ethics consultation. As such, we turned to the ASBH Core Competencies in Healthcare Ethics Consultation to identify areas that we felt committee members should have familiarity with, using these competencies as metrics to develop our survey instrument.

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

End-of-Life Healthcare Sessions at ASBH 2017

The 2017 ASBH
conference
 in October 2017 includes over 400 workshops, panels, and
papers in bioethics and the health humanities.  Here are ones that pertain
to end-of-life issues.


THURSDAY, OCTOBER 19


THU 1:30 pm:  End-of-Life Care and Decision-Making in the ICU – Limited
English Proficiency as a Predictor of Disparities (Amelia Barwise)


Importance: Navigating choices in predominantly English-speaking care settings
can present practical and ethical challenges for patients with limited English
proficiency (LEP). Decision-making in the ICU is especially difficult and may
be associated with disparities in health care utilization and outcomes in critical
care. 


Objective: To determine if code status, advance directives, decisions to limit
life support, and end-of-life decision-making were different for ICU patients
with LEP compared to English-proficient patients. 


Methods: Retrospective cohort study of adult ICU patients from
5/31/2011-6/1/2014. 779 (2.8%) of our cohort of 27,523 had LEP. 


Results: When adjusted for severity of illness, age, sex, education, and
insurance status, patients with LEP were less likely to change their code
status from full code to do not resuscitate (DNR) during ICU admission (OR,
0.62; 95% CI, 0.46-0.82; p


Conclusion: Patients with LEP had significant differences and disparities in
end-of-life decision-making. Interventions to facilitate informed
decision-making for those with LEP is a crucial component of care for this
group.


THU 1:30 pm:  “But She’ll Die if You Don’t!”: Understanding and
Communicating Risks at the End of Life (Janet Malek)


Clinicians sometimes decline to offer interventions even if their refusal will
result in an earlier death for their patients. For example, a nephrologist may
decide against initiating hemodialysis despite a patient’s rising creatinine
levels if death is expected within weeks even with dialysis.

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

Grounding ethics from below: CRISPR-cas9 and genetic modification

By Anjan Chatterjee

The University of Pennsylvania

Anjan Chatterjee is the Frank A. and Gwladys H. Elliott Professor and Chair of Neurology at Pennsylvania Hospital. He is a member of the Center for Cognitive Neuroscience, and the Center for Neuroscience and Society at the University of Pennsylvania. He received his BA in Philosophy from Haverford College, MD from the University of Pennsylvania and completed his neurology residency at the University of Chicago. His clinical practice focuses on patients with cognitive disorders. His research addresses questions about spatial cognition and language, attention, neuroethics, and neuroaesthetics. He wrote The Aesthetic Brain: How we evolved to desire beauty and enjoy art and co-edited: Neuroethics in Practice: Mind, medicine, and society, and The Roots of Cognitive Neuroscience: behavioral neurology and neuropsychology. He is or has been on the editorial boards of: American Journal of Bioethics: Neuroscience, Behavioural Neurology, Cognitive and Behavioral Neurology, Neuropsychology, Journal of Cognitive Neuroscience, Journal of Alzheimer’s Disease, Journal of the International Neuropsychological Society, European Neurology, Empirical Studies of the Arts, The Open Ethics Journal and Policy Studies in Ethics, Law and Technology. He was awarded the Norman Geschwind Prize in Behavioral and Cognitive Neurology by the American Academy of Neurology and the Rudolph Arnheim Prize for contribution to Psychology and the Arts by the American Psychological Association. He is a founding member of the Board of Governors of the Neuroethics Society, the past President of the International Association of Empirical Aesthetics, and the past President of the Behavioral and Cognitive Neurology Society. He serves on the Boards of Haverford College, the Associated Services for the Blind and Visually Impaired and The College of Physicians of Philadelphia. 

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

Call for HCEC Certification Commission Members

In Spring 2017, ASBH successfully completed market research and a role delineation survey, which are critical steps in the development of a sustainable and credible certification program. In July 2017, the ASBH board agreed to appoint an HCEC Certification Commission with responsibility for the development and administration of a certification program. 


For appointment to the Commission, ASBH seeks 3-5 clinical ethics consultants who reflect the interests of the general public in the availability and implementation of an HCEC credential and are representative of the stakeholder groups, including community hospitals and regional health systems, that have an interest in the quality, governance, and operation of the certification program. (The ASBH board will also appoint one member who represents the public or non-employer consumer interest.) The Commission is expected to meet face-to-face for at least one and possibly two 1-2 day meetings and 2-3 conference calls in the coming year.


Appointments will be for initial 1-year terms that may be renewed for a total of no more than 3 years of continuous service. In its first year, the commission will develop a detailed marketing plan and budget; select a testing company; initiate a call for volunteers and select item (exam question) writers for an entry-level exam based on the role delineation study; determine eligibility criteria and develop policies and procedures; and plan for the administration of the first exam. For this purpose, ASBH seeks clinical ethics consultants with relevant experience in governance, program management, and/or marketing. 


ASBH members who are interested in being considered for this work are invited to send
1.

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

Trump is Gross: Taking Political Taste (and Distaste) Seriously

by Shelley Park 

ABSTRACT. This paper advances the somewhat unphilosophical thesis that “Trump is gross” to draw attention to the need to take matters of taste seriously in politics. I begin by exploring the slipperiness of distinctions between aesthetics, epistemology, and ethics, subsequently suggesting that we may need to pivot toward the aesthetic to understand and respond to the historical moment we inhabit. More specifically, I suggest that, in order to understand how Donald Trump was elected President of the United States and in order to stem the damage that preceded this and will ensue from it, we need to understand the power of political taste (and distaste, including disgust) as both a force of resistance and as a force of normalization.

My 5-year-old granddaughter refers to foods, clothes, and people she does not like as “supergross.” It is a verbiage that I have found myself adopting for talking about many things Trumpian, including the man himself. The gaudy, gold-plated everything in Trump Towers; his ill-fitting suits; his poorly executed fake tan and comb-over; his red baseball cap emblazoned with “Make America Great Again;” his creepy way of talking about women (including his own daughters); his racist vitriol about Blacks, Muslims and Mexicans; his blatant over-the-top narcissism; his uncontrolled tantrums; his ridiculous tweets; his outlandish claims; his awkward hand gestures and handshakes; the disquieting ease with which he is seduced by flattery; his embarrassing disregard for facts; his tortured use of language; his rudeness toward other world leaders; the obsequious manner in which other Republicans are treating the man they despised mere months ago; the servility of many Democrats in the face of a military–industrial coup.

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

Participants’ Testimonials: GBI Summer School a Smashing Success, (June 19-30), 2017

The GBI Summer School proved to be even better than anticipated or described. As a newcomer to the discipline, I had expected the course to provide a broad overview of topics and speakers. Indeed, while broad, the degree of expertise and timely subject material provided an excellent and comprehensive survey of the discipline in global and local settings. Moreover, the students provided another dimension of diversity, both in nationalities and areas of expertise. The speakers made their presentation materials readily available, answered questions, and were willing to address topics of interest offline. I would strongly recommend the course to both novices and subject matter experts alike. The course especially demonstrated the need, relevance, and desirability for global bioethics to be better incorporated into public policy formulation.

Geoffrey Pack, Prevention and Protection Officer, Office of Homeland and Security, City of San Diego, M.A.L.D., Fletcher School of Law and Diplomacy, Tufts University in Cooperation with Harvard University

The GBI Summer School, in the heart of NYC’s Pace University Campus, is a fantastic opportunity! International scholars and professionals from all over the world attended the program, contributing their experiences and engaging with bioethics experts. The City of New York – with the nearby Pace University Campus, Brooklyn Bridge, City Hall, and 9/11 Memorial – provided the perfect setting to discuss the global ethical challenges in technology and medicine. Discussions ranged from law and politics to culture and psychology, encompassing the ethical dilemmas that define the 21st century. I have immensely enjoyed not just the internationally known faculty but also hearing from the learners who come from all over the world representing diverse fields.

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

The Back Story on “Can cancer researchers accurately judge whether preclinical reports will reproduce?

How well can researchers accurately predict whether high profile preclinical findings will reproduce? This week in PLoS Biology, STREAM reports the result of a study suggesting the answer is “not very well.” You can read about our methods, assumptions, results, claims, etc. in the original report (here) or in various press coverage (here and here). Instead I will use this blog entry to reflect on how we pulled this paper off.

This was a bear of a study to complete. For many reasons. Studying experts is difficult- partly because, by definition, experts are scarce. They also have limited time. Defining who is and who is not an expert is also difficult. Another challenge is studying basic and preclinical research. Basic and preclinical researchers do not generally follow pre-specified protocols, and they certainly do not register their protocols publicly. This makes it almost impossible to conduct forecasting studies in this realm. We actually tried a forecast study asking PI’s to forecast the results of experiments in their lab (we hope to write up results at a later date); to our surprise, a good many planned experiments were never done, or when they were done, they were done differently than originally intended, rendering forecasts irrelevant. So when it became clear the Reproducibility Project: Cancer Biology project was a go and that they were working with pre-specified and publicly registered protocols, we leapt at the opportunity.

For our particular study of preclinical research forecast, there was another challenge. Early on, we were told that the Reproducibility Project: Cancer Biology was controversial.

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

Personalized Medicine: Our Future or Big Data Voodoo?

Kumar Ethirajan, MD

NOTE: Kumar Ethirajan, MD, an oncologist specializing in cancer genetics in the Kansas City area since 1993 and member of the Center for Practical Bioethics’ board of directors, will present this topic as part of the Center’s BIOETHICS MATTERS lecture series on Wednesday, July 19, 7:00 pm, at the Kansas City Public Library Plaza Branch, 4801 Main Street, Kansas City, MO. Bring your perspectives, questions and personal stories. Admission is free. All are welcome. 

Personalized medicine has the potential to revolutionize medicine. Actually, that’s not true. Personalized medicine IS REVOLUTIONIZING medicine. 

Personalized medicine IS our future! Yet, based on a 2013 survey by GfK, a global consumer research firm, just 27% of people have heard of the term personalized medicine and, of those, only 4% understand what the term means.

You may have heard personalized medicine referred to as genomic medicine, precision medicine or individualized medicine. Whatever you call it, it’s medicine that uses information about your genes to prevent, diagnose and treat disease. In cancer, it’s about using information about a tumor to discover certain biomarkers or genes and, hopefully, having a drug to treat it. So far, researchers have discovered more than 1800 disease genes, created more than 2,000 genetic tests for human conditions, and have 350 drugs currently in clinical trials.

So, this is great, right? Yes. But consider that some 30% of the world’s stored data is generated by the healthcare industry – and that a single patient on average generates 80 megabytes per year! With healthcare data exploding like this, shouldn’t we be thinking about the questions it raises?

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

What’s At Stake in Speculation? by Matthew Wolf-Meyer

We’ve long been thinking about health, well-being, illness, sickness, and disease, in relation to risk. That things might not be maintained at their present levels, either individually, among our cared-for, or socially, is not something new, even if we’ve entered a period of intensification, with calls to ‘repeal and replace’ the Affordable Care Act, and the slow, often subtle chipping away at social safety net policies in the United States and throughout the North Atlantic in the spirit of austerity and for the sake of freedom. What might have been primarily personal and interpersonal concerns about health and disease have also expanded to include the environment and the species, as we continue to think through the Anthropocene and its consequences for exposures to environmental dangers – toxins and radiation foremost among them – and the spread of once localized diseases to the global stage, as the recent zika outbreak raised, and Ebola recurrently threatens. The intensification and generalization of risk may very well entail the intensification and generalization of speculation; what are our individual and collective possible futures? And what better way to confront our possible futures than through media that explicitly engages with the future, speculative and science fiction?

Is speculation fundamental to life itself? That’s the question that Steve Shaviro seeks to answer in his recent Discognition. Shaviro argues that sentience itself – which we might see operating in computer programs, plants, slime mold, and emergent technologies – is founded on the existence of the ability to speculate, to anticipate and plan. We may not be able to infer how speculation works for a sentient computer program or a slime mold, yet, they depend upon an ability to forecast, to imagine what may come next, so as to act appropriately in advance.

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.