Tag: patients

Bioethics Blogs

A more ethical form of HIV criminalization

HIV has been criminalized throughout the history of the epidemic, or to be more exact, people living with HIV and their behaviors have been a persistent focus of criminal law. This was undoubtedly due in part to the fact that HIV initially was untreatable and infection (for the vast majority) spelt death. It was terrifying. But it wasn’t just an understandable public health reaction. Criminalization is not necessarily a wise way of controlling an epidemic, as it can be counterproductive, driving underground persons potentially subject to the laws. And there is no way of getting around that those disproportionately affected by HIV (especially in the USA), were considered ‘undesirables’ by many in the public and those leaders they voted for. Criminalization also reflected a moral panic against homosexuals and injection drug users. So, because it was not really based on solid public health principles or scientific evidence in the first place, it is unsurprising that states made laws covering actions highly unlikely to lead to transmission (like spitting or oral sex), fail to take the use of new prevention technologies (PreP, use of antiretrovirals) into account, and often don’t take into consideration the intention to cause harm. What is perhaps more surprising (and depressing) is that many of these laws are still on the books.  

I am thinking that HIV criminalization should not be abolished, but pointed in a better direction. Let me back up. For a few years now, I have been working on a NIH-funded project on the social and ethical dimensions of HIV cure research.

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

“Surprise Question” Performs Poorly to Predict Death

New research in the CMAJ shows that the commonly used “surprise question” does not work well.


The surprise question is intended to be a simple and feasible screening test to identify patients with hospice and palliative care needs.  It involves a clinician reflecting on the question,
“Would I be surprised if this patient died in the next 12 months?”



But the surprise question performs poorly to modestly when used to predict death at 6 to 18  months, with even poorer performance among patients with non-cancer illness. The authors conclude that the surprise question should not be used as a stand-alone prognostic tool.

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

How to make Nazi doctors

Most people who go into medicine have as at least part of their motivation the desire to help other people. I’m sure this was as true in 1930’s Germany as anywhere else. So how did a cadre of Nazi doctors come not only to commit crimes against humanity, but also to defend the moral correctness of their conduct when placed on trial for those crimes? The answer is complex, but one way was through the teaching of medical ethics.

An article in the April 18th Annals of Internal Medicine tells a cautionary tale for teachers and learners of bioethics. Entitled “Lectures on Inhumanity: Teaching Medical Ethics in German Medical Schools Under Nazism,” the article details how the Nazi party developed a curriculum for teaching ethics in medical schools that “was intended to explicitly create a ‘new type of physician’ . . . trained to internalize and then implement the Nazi biomedical vision . . . shifting the focus of ethical concern and medical care away from the individual patient and toward the general welfare of society or the people.” The curriculum included lectures in racial hygiene, the science of heredity, population policy, military medicine, and the history of medicine. Only long-standing members of the Nazi party were appointed lecturers. The lecturer at Berlin University, Rudolf Ramm, wrote the ethics textbook used in the curriculum, which emphasized physician paternalism in practicing their moral obligation to rid society of certain groups, and asserted that every (Aryan) person in Germany had a moral duty to stay healthy.

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

Into the Gray Zone: A Neuroscientist Explores the Border Between Life and Death

Coming soon from Scribner is Adrian Owen’s new book Into the Gray Zone. The book reviews Owen’s work exploring the “gray zone” between full consciousness and brain death. 


People in this “middle place” have sustained traumatic brain injuries or are the victims of stroke or degenerative diseases, such as Alzheimer’s and Parkinson’s. Many are oblivious to the outside world, and their doctors believe they are incapable of thought. But a sizeable number are experiencing something different: intact minds adrift deep within damaged brains and bodies. 


Into the Gray Zone asks some tough and terrifying questions, such as: 

  • What is life like for these patients? 
  • What can their families and friends do to help them? 
  • What are the ethical implications for religious organizations, politicians, the Right to Die movement, and even insurers? 
  • In defining what a life worth living is, are we too concerned with the physical and not giving enough emphasis to the power of thought? 
  • What, truly, defines a satisfying life?

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

Dueling BRCA Databases: What About the Patient?

The news release Monday morning grabbed my attention:

“Study finds wide gap in quality of BRCA1/2 variant
classification between Myriad Genetics and a common public database.”

Myriad Genetics had been exclusively providing tests, for
$3000+ a pop for full BRCA gene sequencing, for 17 years before the Supreme
Court invalidated key gene patents back in 2013. Since the ruling a dozen or so
competitors have been offering tests for much lower prices. Meanwhile, Myriad
has amassed a far deeper database than anyone else, having been in the business
so much longer. And it’s proprietary.

CLASSIFYING GENE VARIANTS

(NHGRI)

Public databases of variants of health-related genes have
been around for years too. The best known, ClinVar, collects and curates data
from the biomedical literature, expert panels, reports at meetings, testing
laboratories, and individual researchers, without access to Myriad’s database.
ClinVar uses several standard technical criteria to classify variants as
“pathogenic,” “benign,” or “of uncertain significance.” (“Likely pathogenic”
and “likely benign” were used more in the past.)

ClinVar lists 5400 variants just for BRCA1. The criteria
come from population statistics, how a particular mutation alters the encoded
protein, effects on the phenotype (symptoms), and other information.
Bioinformatics meets biochemistry to predict susceptibility. The BRCA1 protein
acts as a hub of sorts where many other proteins that control DNA repair
gather. DNA Science discussed the genes behind breast and ovarian cancers here.

As gene sequences accumulate in the databases and troops of
geneticists and genetic counselors annotate them, the proportion of pathogenic
and benign entries will increase as that of the unsettling “variants of
uncertain significance” — VUS — will decrease.

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

Dueling BRCA Databases: What About the Patient?

The news release Monday morning grabbed my attention:

“Study finds wide gap in quality of BRCA1/2 variant
classification between Myriad Genetics and a common public database.”

Myriad Genetics had been exclusively providing tests, for
$3000+ a pop for full BRCA gene sequencing, for 17 years before the Supreme
Court invalidated key gene patents back in 2013. Since the ruling a dozen or so
competitors have been offering tests for much lower prices. Meanwhile, Myriad
has amassed a far deeper database than anyone else, having been in the business
so much longer. And it’s proprietary.

CLASSIFYING GENE VARIANTS

(NHGRI)

Public databases of variants of health-related genes have
been around for years too. The best known, ClinVar, collects and curates data
from the biomedical literature, expert panels, reports at meetings, testing
laboratories, and individual researchers, without access to Myriad’s database.
ClinVar uses several standard technical criteria to classify variants as
“pathogenic,” “benign,” or “of uncertain significance.” (“Likely pathogenic”
and “likely benign” were used more in the past.)

ClinVar lists 5400 variants just for BRCA1. The criteria
come from population statistics, how a particular mutation alters the encoded
protein, effects on the phenotype (symptoms), and other information.
Bioinformatics meets biochemistry to predict susceptibility. The BRCA1 protein
acts as a hub of sorts where many other proteins that control DNA repair
gather. DNA Science discussed the genes behind breast and ovarian cancers here.

As gene sequences accumulate in the databases and troops of
geneticists and genetic counselors annotate them, the proportion of pathogenic
and benign entries will increase as that of the unsettling “variants of
uncertain significance” — VUS — will decrease.

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

Combatting Neglected Tropical Diseases: Much Progress, but Millions of Neglected Patients Lack Access to Care

Julien Potet of Médecins Sans Frontières discusses recent successes and presents suggestions for the next steps in the fight against NTDs. This week scientists, policy makers, and other global health actors will meet in Geneva for a

Source: Speaking of Medicine, blog of the Public Library of Science.

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

Donald Harvey, Angels of Death, and Medical Futility

Donald Harvey died this week in prison.  Called the “Angel of Death,” the healthcare worker killed dozens of hospital patients in the 1970s and 1980s.

Interestingly, Harvey described his acts (mixing cyanide, rat poison, or arsenic into their foo…

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

Kathy Greenlee’s Reflections on Paths to Person-Centered Planning

Challenging Us to See the Whole Person at All Stages of Life

Kathy Greenlee, VP for Aging and Health Policy

The Center for Practical Bioethics hosted the Joan Berkeley symposium on Thursday, April 6. The title for the day was “Paths to Person-Centered Planning.” In planning the event, my objective was to focus on tools and techniques grounded in a disability policy perspective that could benefit healthcare professionals and bioethicists. The day brought articulate and engaged speakers, raised new questions, introduced different language, and ultimately affirmed the strength of a multi-disciplinary approach to supporting people and their families as they face serious illness and end of life. 

Four distinct concepts emerged:
1) the perspective of the person as patient,
2) similarities and differences between shared decision-making and supported decision-making, 
3) the balance between what is “important to” a person and “important for” a person, and
4) the need to see a patient within the context of their family, however defined.

Person-Centered Communication

The panelists who opened the day demonstrated the importance of listening to people and the first speaker stole the show. 
Cathy Enfield, member of Self-Advocates Becoming Empowered (SABE), is an articulate adult woman with a developmental disability. She uses an iPad for communication assistance. She gave a first-person account of having healthcare providers look past her and talk directly to her caregiver. 
To communicate, Cathy needs support. Yet, public policies ranging from transportation to healthcare create barriers and financial disincentives that require her to be accompanied by someone to assist. Cathy’s comments were so compelling one of the medical educators in the audience intends to make them required reading for his first-year medical students.

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

Luhrmann and Marrow’s Our Most Troubling Madness by Murphy Halliburton

Our Most Troubling Madness: Case Studies in Schizophrenia Across Cultures

T.M. Luhrmann and Jocelyn Marrow, editors

University of California Press, 2016, 304 pages

 

A key premise of this volume of ethnographic case studies is that schizophrenia, or the various conditions we label as schizophrenia and related psychoses, varies in crucial ways in terms of experience, prognosis and outcome in different sociocultural contexts. Tanya Luhrmann’s introduction to the volume, which features twelve articles presenting twelve individuals diagnosed with schizophrenia (including three cases presented by Luhrmann), casts doubt on the biomedical model of schizophrenia, or at least the strong biomedical model where an individual’s biology is the determining factor in the pathogenesis of schizophrenia. Support for this critique comes from within the fields of psychiatry, psychology and related disciplines, and not just from anthropology, the disciplinary home base of many of the authors in this compilation. This supports the volume’s efforts to speak to an audience beyond the contributors’ own disciplines and “serve as a positive catalyst for change” in how we treat psychosis, especially in European and North American settings (5).

The introduction also briefly traces the history of theories of schizophrenia in psychiatry and anthropology, including moments when the two fields overlapped as with Gregory Bateson’s theory that schizophrenia results from a “double bind” that develops in a person’s psyche from conflicting social cues. This theory, put forth by an anthropologist, had a significant place in psychiatrists’ understanding of pathogenesis until the rise of the medical model deflected the blame from families toward “random bad genetic luck” (16).

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.