Tag: science

Bioethics Blogs

The Science March: Can science-based advocacy be both nuanced and effective?

By Jennifer Lee

Jenn Laura Lee is a PhD candidate in neuroscience at New York University. She is also a member of the Scientist Action and Advocacy Network (ScAAN.net), which offers pro bono data science and research to organizations seeking to implement positive social change.

I believe in protests. I attend them, I endorse them, and I think that they make a difference. Raising political consciousness in the scientific community in any form seems like a good thing. The Science March moreover seems like a great opportunity for a community of people sharing common livelihood to advocate for the importance of their work in policy-making, as it relates to nuclear non-proliferation, climate change, vaccination, and so on. 
But while I plan to attend the March for Science in New York, I’m hoping to use this article to examine, articulate, and hopefully mitigate the slight unease that’s been growing in me surrounding some of the language that scientists have been using to describe the march (both critics and proponents alike).


Let’s start by pointing out that protests are effective for a number of reasons— they can apply pressure for lawmakers to advance specific aims (for instance, the passing of a bill). They can also act as a springboard for awareness— a starting point for deeper and more nuanced dialogue. In absence of particularly well-defined specific aims, the Science March might function primarily in service of the latter objective, among others.
Critics like Robert Young have tried to pin their unease on bad optics — they worry about a perceived “loss of objectivity,” or the so-called “politicization of science.” These critics fear we will lose our moral high-ground as calm and objective voices of pure reason in the public eye.

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 News

For Many at Johns Hopkins, the Defense of Science is a Cause They Can Rally Behind

JHU faculty, staff, students discuss their plans to participate in Saturday’s March for Science in Washington, D.C.

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 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

Research Matters: Diverse Voices Who Support the Value of Knowledge

In preparation for the March For Science (to be held in Washington, DC and other locations across the country on April 22), PLOS Pathogens Research Matters Editor Glenn Rall revisits the initial goal of the Research Matters series: an

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

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

Conflict of Interests Disclosures Come to PubMed

Scholars and policymakers have long been concerned that the biomedical science literature — and thus the practice of medicine — is biased by the companies who fund research on their own products.  Prior research has shown that industry-funded studies tend to produce … Continue reading

Source: Bill of Health, examining the intersection of law and health care, biotech & 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

An Assessment of Mitochondrial Replacement Therapy

By: Alexa Woodward

Last year, a baby boy was born from an embryo that underwent mitochondrial replacement therapy (MRT). MRT was used to prevent this child from inheriting a mitochondrial disease from his mother, specifically infantile subacute necrotizing encephalomyelopathy – a disease that affects the central nervous system and usually results in death within the first few years of life. While controversial, assisted reproductive technologies (ARTs) such as MRT provide prospective parents with additional options and have the potential to improve the quality of human life by preventing disease.

This story is of bioethical interest because this technique results in germline modification, which is the alteration of DNA in the reproductive cells of humans that will be passed on to their offspring. Implementing MRT in humans has consequentially garnered much criticism, from simple health-related implications (such as unknown harms to potential offspring and eugenics concerns) to the futuristic next logical step of scientific intervention; directly editing the nuclear genome.

With MRT, modifications affect the mitochondrial genome (mtDNA), not the nuclear genome. Researchers emphasize the lack of bearing that mtDNA has on personal characteristics and the overall maintenance of “genetic integrity,” especially when compared to using the whole donor egg with an “unrelated” nuclear genome.1 Even so, additional concerns arise regarding the long-term anthropological effects, blurring the distinction between therapy and enhancement, and issues of resource allocation.

Mutations and deletions  in the mitochondrial genome can result in mitochondrial diseases affecting the neurological, musculoskeletal, cardiac, gastrointestinal, renal, and other systems, all of which are incurable.  MRT uses the intended parents’ nuclear DNA in conjunction with a donor’s mitochondria.

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.