Tag: cancer

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 News

A Lesson From the Henrietta Lacks Story: Science Needs Your Cells

It’s often portrayed as a story of exploitation. Henrietta Lacks, a poor, young African-American woman, learned she had terminal cancer. Cells collected from a biopsy of her cancer were cultured without her knowledge or permission to develop a cell line, called HeLa. Over the ensuing decades, research using HeLa cells led to scores of medical advances, saving lives — and making a lot of money for a lot of people, though not for Ms. Lacks’s family

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

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

Global Health Policy: Trump and the Reinstatement of the Global Gag Rule

By: Jorge Luis Rivera-Agosto

On January 23, 2017, President Trump signed a Presidential Memorandum reinstating the so-called Mexico City Policy. The Memorandum conditions U.S. global health and family planning assistance to a strict rule that precludes foreign non-governmental organizations (also known as “NGOs”) from promoting or performing abortion as a method of family planning. Also known as the “global gag rule,” this policy represents a blow specifically to women’s health worldwide. Thanks to this new action, it will become harder, like in past years when it was in effect, to have resources to support family planning and reproductive health services, such as “family counseling, contraceptive commodities, condoms, and reproductive cancer screenings.” Even though the U.S. government won’t retract from the Memoranda until this Administration ceases, global efforts should be made to ameliorate the negative effects the new policy will cause.

The Mexico City Policy was first enacted by President Reagan in 1984 – and at the time, it represented an expansion of existing legislative restrictions of the use of U.S. funds for abortions internationally. It was then rescinded by President Clinton in 1991; reinstated by President Bush in 2001; rescinded by President Obama in 2009; and reinstated and expanded by President Trump in 2017. The policy requires foreign NGOs “to certify that they will not perform or actively promote abortion as a method of family planning, using funds from any source (including non-U.S. funds), as a condition for receiving U.S. government global family planning assistance and any other U.S. global health assistance.” The reason given to enact such policy was that the U.S.

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

Henrietta Lacks Film Highlights Important Issues, Johns Hopkins History

Johns Hopkins leaders sent a message to the JHU and Hopkins Medicine communities today about an upcoming HBO film, The Immortal Life of Henrietta Lacks. The film is based on the best-selling book about the life of a woman who was treated for cervical cancer at The Johns Hopkins Hospital in the 1950s

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

Teaching Medical Anthropology by Ari Gandsman

In the decade since becoming a full time professor, medical anthropology has been one of my core courses. I have taught it seven times.  Although the basic structure of the course remains similar, emphases have shifted over time. Perhaps I can best highlight the evolution of the course through a discussion of readings I use since readings are the backbone of a syllabus.  Even though I generally do not follow texts closely since I see lectures as overlapping but also supplemental and complimentary to readings, I try to mirror topics that they will be reading about, often highlighting a general theoretical literature or approach while the students read a single illustration.

Starting from the beginning, my history of medical anthropology remains the same, focusing on when “medicine” was subsumed into broad and now antiquated anthropological categories of magic and witchcraft. I never stray far from Evans-Pritchard’s Witchcraft, Oracles & Magic Among The Azande, an apparent professional contractual obligation for meAlthough I have given them the entire ethnography [the abridged in print edition] to read twice in the past, I have more lately just given them a short excerpt, often “The Notion of Witchcraft Explains Unfortunate Events.” I once also used W.H. Rivers Medicine, Magic and Religion but, although fascinating and of historic importance, it proved esoteric for an undergraduate course.  When I first started teaching, I tried to include more on non-Western medical systems, including using ethnographies on Traditional Chinese Medicine or Tibetan medicine. More recent students may be disappointed that I do not delve further into non-Western medical systems, what many students with hazy ideas of the discipline may think a medical anthropology course should almost entirely consist of.

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

Breakthrough Immunotherapies Seem Like a Dream Come True for Children with Leukemia

Guest Post: Nancy Jecker, Aaron Wightman, Abby Rosenberg, Doug Diekema

Paper: From protection to entitlement: selecting research subjects for early phase clinical trials involving breakthrough therapies

A breakthrough therapy to cure cancer in children suffering from acute lymphoblastic leukemia (ALL) is a dream for many families.  New immunotherapies appear to make this dream a reality. Such therapies use a person’s own immune cells to recognize and combat their disease. In the largest study to date of ALL patients treated with a form of immunotherapy known as Chimeric Antigen Receptor (CAR) T-Cell therapy, a 93% remission rate was reported. Such results are a glimmer of hope for those whose prognoses were previously considered very poor.

However, the good news is tempered by the fact this potentially lifesaving experimental therapy may not be available to everyone who might benefit. And demand is growing as word spreads. Since CAR T-cell therapy for ALL is available only through clinical trials, do patients have a right to participate? How should we choose among medically suitable candidates?

We have faced these questions before. Most recently, with ZMapp to treat Ebola Virus Disease, azidothymidine (AZT) to treat HIV and AIDS, and Immunitab (Gleevac) to treat Chronic Myleogenous Leukemia. Are patients suffering from devastating, life-threatening diseases entitled to breakthrough therapies?

In a recent paper, we argue that benefit is a continuum, from the complete uncertainty associated with standard research, to an intermediate stage where evidence of benefit mounts and reaches a peak, to a final stage of clearly demonstrated benefit that is sufficient to gain approval for clinical applications.

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

Physician Recommendations About Breast Cancer Screening Vary, Survey Finds

Trust in different guidelines and a physician’s specialization affect their screening recommendations, according to the study published in the Journal of the American Medical Association Internal Medicine

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

20 Years of Death with Dignity in USA

The nation’s first “death with dignity” law turns 20 this year.  Since the six other states have affirmatively legalized medical aid in dying.


A new analysis published in JAMA Oncology is taking a look back at how the law has been utilized in Oregon since it went into effect in 1997. 

  • Total Usage – A total of 1545 prescriptions were written, and 991 patients died by using legally prescribed lethal medication. 
  • Age & Gender – Of the 991 patients, 509 (51.4%) were men and 482 (48.6%) were women. The median age was 71 years (range, 25-102 years). 
  • Increase – The number of prescriptions written increased annually (from 24 in 1998 to 218 in 2015), and the percentage of prescription recipients dying by this method per year averaged 64%. 
  • Diagnoses – Of the 991 patients using lethal self-medication, 762 (77%) recipients had cancer, 79 (8%) had amyotrophic lateral sclerosis, 44 (4.5%) had lung disease, 26 (2.6%) had heart disease, and 9 (0.9%) had HIV. 
  • Mental Health Screening – Of 991 patients, 52 (5.3%) were sent for psychiatric evaluation to assess competence. 
  • Race & Hospice – Most (953; 96.6%) patients were white and 92.2% were in hospice care. 
  • Insurance & Education – Most (118, 92.2%) patients had insurance and 92 (70.8%) had at least some college education. Most (94%) died at home. 
  • Duration – The estimated median time between medication intake and coma was 5 minutes (range, 1-38 minutes); to death it was 25 minutes (range, 1-6240 minutes). 
  • Complications – Thirty-three (3.3%) patients had known complications. 
  • Motivation – The most common reasons cited for desiring PAD were activities of daily living were not enjoyable (89.7%) and losses of autonomy (91.6%) and dignity (78.7%); inadequate pain control contributed in 25.2% of cases.

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.