Tag: patients

Bioethics Blogs

Public Perception and Communication of Scientific Uncertainty

Scientific results are inherently uncertain. The public views uncertainty differently than scientists. One key to understanding when and how scientific research gets misinterpreted is to understand how the public thinks about scientific uncertainty.

A recent paper in the Journal of Experimental Psychology: General explores how laypersons perceive uncertainty in science. Broomell and Kane use principle component analysis to discover three underlying dimensions that describe how the public characterizes uncertainty: precision, mathematical abstraction, and temporal distance. These three dimensions, in turn, predict how people rate the quality of a research field. Precision – loosely defined in this context as the accuracy of the measurements, predictions, and conclusions drawn within a research field – is the dominating factor. One interpretation is that the public is primarily concerned with definitiveness when evaluating scientific claims.

Members of the public lose confidence when fields of study are described as being more uncertain. This is relevant for scientists to consider when communicating results. On the one hand, over-selling the certainty of an outcome can mislead. On the other hand, the public might tend to dismiss important scientific findings when researchers describe uncertainty honestly and openly, as we have seen in the public denial of vaccinations and climate change. Perceptions of a research field do not seem to influence how people view individual studies, so each study should be treated as its own communique.

Broomell et al found some evidence that personal characteristics interpret scientific uncertainty in different ways. Self-identified Republicans are more concerned about expert disagreement, while self-identified Democrats are more concerned with the quality of evidence.

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

Radical Technology, Bodyhacking, & Medicine

Michele Battle-Fisher calls on conventional medical to consider how acts of healing will change in the context of transhumanism.

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Humanness is in flux as human bodies are being hacked (altered) by transhumanists and others in their quest for super wellness, super intelligence and super longevity.

Bodyhacking refers to changing the human body in appearance and function using a “device, technique or procedure that an individual CHOOSES to utilize, augment, modify or improve their body.” Examples of bodyhacking include implanting magnets under one’s skin to be able to open a garage door, and implanting an engineered human ear on one’s arm to gain hypersensory abilities. Typically, such ‘hacks’ are not approved by governmental agencies or traditional medical insurance. According to Body Hacking Con, while bodyhacking is typically considered fringe, bodyhackers are “simply people who hack (alter) their bodies.”

Bodyhacking is part of a counterculture movement that is often called transhumanism. Transhumanists believe that the body is obsolete and that death is a cruel end to be avoided. In their view, the time is ripe for taking advantage of fast-paced technologies to improve our imperfect bodies and eventually cheat death.

Recent revolutionary innovations such as CRISPR/Cas9 gene-editing technology are helping to further push the boundaries of bodyhacking by fighting the genetic causes of death. While the medical community has accepted the idea of somatic cell gene editing, germline gene editing remains controversial.  There is much excitement in the transhumanism community that biohacks such as CRISPR will move from the purvue of controlled medical settings to the at-home, do-it-yourself labs.

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

Aid in Dying Case Arguments to be heard in New York Court of Appeals Tuesday, May 30

The right of terminally ill, mentally competent adults to achieve a more peaceful death is at stake in Myers v. Schneiderman, now before the New York Court of Appeals, New York’s highest state court. 


Oral arguments will be held on May 30 at 2:30 PM in Albany. The proceedings of the court will be webcast live here.  


The appeal seeks to reverse lower court decisions that dismissed the case prior to trial. The case, brought by patients, doctors, End of Life Choices New York, and its Clinical Director, seeks to establish the right of terminally ill patients to receive a prescription for medication which they can self ingest to achieve a peaceful death if confronted by suffering they find unbearable. 


The court has before it two sets of arguments: first the court is asked to determine the reach of New York criminal law; plaintiffs allege it does not reach this conduct. Second, if the court finds the criminal statute does outlaw aid in dying it will consider whether guarantees of liberty, privacy and autonomy conferred by the New York State Constitution protect it.

Source: bioethics.net, a blog maintained by the editorial staff of The American Journal of Bioethics.

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

Snapshots of Life: Fighting Urinary Tract Infections

Source: Valerie O’Brien, Matthew Joens, Scott J. Hultgren, James A.J. Fitzpatrick, Washington University, St. Louis

For patients who’ve succeeded in knocking out a bad urinary tract infection (UTI) with antibiotic treatment, it’s frustrating to have that uncomfortable burning sensation flare back up. Researchers are hopeful that this striking work of science and art can help them better understand why severe UTIs leave people at greater risk of subsequent infection, as well as find ways to stop the vicious cycle.

Here you see the bladder (blue) of a laboratory mouse that was re-infected 24 hours earlier with the bacterium Escherichia coli (pink), a common cause of UTIs. White blood cells (yellow) reach out with what appear to be stringy extracellular traps to immobilize and kill the bacteria.

Valerie O’Brien, a graduate student in Scott Hultgren’s lab at Washington University, St. Louis, snapped this battle of microbes and white blood cells using a scanning electron microscope and then colorized it to draw out the striking details. It was one of the winners in the Federation of American Societies for Experimental Biology’s 2016 BioArt competition.

As reported last year in Nature Microbiology, O’Brien and her colleagues have evidence that severe UTIs leave a lasting imprint on bladder tissue [1]. That includes structural changes to the bladder wall and modifications in the gene activity of the cells that line its surface. The researchers suspect that a recurrent infection “hotwires” the bladder to rev up production of the enzyme Cox2 and enter an inflammatory state that makes living conditions even more hospitable for bacteria to grow and flourish.

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

Ten years since the discovery of iPS cells. The current state of their clinical application

Photo Neurons derived from human iPS cells Stem Cells Australia

Background

Few biomedical discoveries in recent decades have raised so many expectations as the achievement of adult reprogrammed cells or induced pluripotent stem (iPS) cells.1

Pluripotent cells are obtained from adult cells from various tissues that, after genetic reprogramming, can dedifferentiate to a pluripotency state similar to that of embryonic cells, which allows for subsequent differentiation into different cell strains.2,3

In our opinion, this discovery is relevant not only to biomedical issues but also to ethical ones, given that iPS cells could replace human embryonic stem cells (see HERE) – whose use raises numerous ethical problems – in biomedical experimentation and in clinical practice. However, after the last 10 years, the use of iPS cells has still not been clarified. A number of expectations have been met, but other mainly clinical expectations are still far from being achieved.

Current research limitations with iPS cells

There is a notable low efficacy in the techniques employed for obtaining a sufficient proportion of iPS cells, which represents a difficulty in its clinical application.4  Another limitation is the incomplete reprogramming, which depends on the type of cell employed,5 and the problems of mutagenesis resulting from inserting exogenous transcription-factor coding genes, which can cause tumors in the employed cells used.6 Recent studies aim to mitigate this effect.7 A clinical trial for treating macular degeneration with retinal pigment epithelium cells derived from autologously obtained iPS cells has recently been halted.8 After an initially successful experience with the first treated patient, the genetic sequencing of the iPS cells obtained from the second patient revealed mutations in 3 different genes, one of which was classified as oncogene in the Catalogue of Somatic Mutations in Cancer.

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

Interview with Arthur Caplan

by Kaitlynd Hiller and Rachel F. Bloom

It is a difficult task to succinctly describe the professional accomplishments of Arthur Caplan, PhD. For the uninitiated, Dr. Caplan is perhaps the most prominent voice in the conversation between bioethicists and the general public, as well as being a prolific writer and academic. He is currently the Drs. William F. and Virginia Connolly Mitty Professor of Bioethics at NYU Langone Medical Center and NYU School of Medicine, having founded the Division of Bioethics there in 2012. Additionally, he co-founded the NYU Sports and Society Program, where he currently serves as Dean, and heads the ethics program for NYU’s Global Institute for Public Health. Prior to joining NYU, he created the Center for Bioethics and Department of Medical Ethics at the University of Pennsylvania Perelman School of Medicine, serving as the Sidney D. Caplan Professor of Bioethics. Dr. Caplan is a Hastings Center fellow, also holding fellowships at The New York Academy of Medicine, the College of Physicians of Philadelphia, the American Association for the Advancement of Science, and the American College of Legal Medicine. He received the lifetime achievement award of the American Society of Bioethics and Humanities in 2016.

Dr. Caplan’s experience is not at all limited to the academic realm: he has served on numerous advisory counsels at the national and international level, and is an ethics advisor for organizations tackling issues from synthetic biology to world health to compassionate care. Dr. Caplan has been awarded the McGovern Medal of the American Medical Writers Association, the Franklin Award from the City of Philadelphia, the Patricia Price Browne Prize in Biomedical Ethics, the Public Service Award from the National Science Foundation, and the Rare Impact Award from the National Organization for Rare Disorders; he also holds seven honorary degrees.

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

Putting A Lid On Waste

Needless medical tests not only cost $200B – they can do harm. This overly aggressive care also can harm patients, generating mistakes and injuries believed to cause 30,000 deaths each year

Source: Bioethics Bulletin by the Berman Institute of Bioethics.

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

Decades on from Henrietta Lacks, we’re still struggling to find an adequate consent model

The ‘immortal’ HeLa cells. Heiti Paves/Shutterstock

When 30-year-old Henrietta Lacks walked through the doors of a Baltimore hospital in 1951 to get a “knot in the stomach” checked, she couldn’t have known she was about to change the face of medical research.

After undergoing a biopsy on her “knot”, Lacks was diagnosed with cervical cancer; it was so aggressive that she died only a few months later.

Henrietta Lacks.
Oregon State University/Flickr., CC BY-SA

But that was not the end of Lacks’s “life”. A small part of the cervical biopsy was retained and conveyed to the hospital’s tissue culture laboratory. There Dr George Gey, head of the laboratory, had been working for a few years on a system whereby human cells would continuously divide and grow in culture dishes. Gey had had no success thus far, but when he placed Lacks’s cells in culture, they behaved very differently.

Lacks’s cells survived, multiplied, grew robustly, and continued to do so for weeks and months afterwards – subsequently generating the first immortalised human cell line.

Gey never made a profit from these “HeLa” cells – named after Henrietta Lacks – but did distribute them to other scientists. Since then, the HeLa cells have been grown in countless laboratories across the globe and have now lived for twice as long outside Lacks’s body as they did inside it.

HeLa cells have revolutionised medical research, made countless contributions to medicine – from vaccine production to fertility treatment – and have been the foundation of a multi-billion dollar industry.

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

How you’ll grow up, and how you’ll grow old

By Nathan Ahlgrim
Nathan Ahlgrim is a third year Ph.D. candidate in the Neuroscience Program at Emory. In his research, he studies how different brain regions interact to make certain memories stronger than others. In his own life, he strengthens his own brain power by hiking through the north Georgia mountains and reading highly technical science…fiction.

An ounce of prevention can only be worth a pound of cure if you know what to prevent in the first place. The solution to modifying disease onset can be fairly straightforward if the prevention techniques are rooted in lifestyle, such as maintaining a healthy diet and weight to prevent hypertension and type-II diabetes. However, disorders of the brain are more complicated – both to treat and to predict. The emerging science of preclinical detection of brain disorders was on display at Emory University during the April 28th symposium entitled, “The Use of Preclinical Biomarkers for Brain Diseases: A Neuroethical Dilemma.” Perspectives from ethicists, researchers conducting preclinical research, and participants or family members of those involved in clinical research were brought together over the course of the symposium. The diversity of panelists provided a holistic view of where preclinical research stands, and what must be considered as the field progresses.
Throughout the day, panelists discussed different ethical challenges of preclinical detection in the lens of three diseases: preclinical research and communicating risk in the context of Autism Spectrum Disorder (ASD), interventions and treatment of preclinical patients in the context of schizophrenia, and the delivery of a preclinical diagnosis and stigma in the context of Alzheimer’s disease.

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

Medical Students Can Handle the Truth; Their Mentors Should be More Open About It

By Shannon Tapia

Medical School is rough.  Fortunately there is a recent movement to make medical education more humane.  The movement to bring humanity, ethics, and love back into the molding of our future physicians is crucial. Personally, I felt my medical school was on the forefront of this push.  Perhaps it was because we had Jesuit priests for attendings and the hospital’s motto of “We also treat the human spirit” filtered into the treatment of students.  Whether it was something about myself or my medical school, I was fortunate to never experience the depression, competitive urges, burnout and isolation that is so prevalent during American medical school years…

But there is an underlying and hidden truth that is never spoken about, or at least wasn’t to me, in medical school.  As students we are warned how tough medical school is and furthermore how absolutely draining residency is.  When we’re in the thick of either in even the most uplifting programs and schools, we are monitored for burnout, offered services to prevent it, and given support in ways students and residents of the 20th century never were. More frequently now, we are prepared for these harsh realities.  But what we’re not told, ever, is that even if and when we make it through medical school and residency/fellowship to attending physicians we may well find it’s not greener on the other side.  We may still first experience burnout when we’re supposed to be summiting our Everest Mountain of medical training. As many mountain climbers will tell you, often the way down from the peak is just as hard if not harder than the climb up.

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.