Tag: nature

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

Final Rule, three months later

It’s been three months since the announcement of the new Common Rule. Some reactions so far:

Shweder and Nisbett hope for vast deregulation

On March 12, Richard A. Shweder and Richard E. Nisbett published an essay in the Chronicle of Higher Education celebrating the new final rule:

in January the federal government opened the door for universities to deregulate vast portions of research in the social sciences, law, and the humanities. This long-sought and welcome reform of the regulations requiring administrative oversight of federally funded human-subject research on college campuses limits the scope of institutional review board, or IRB, management by exempting low-risk research with human subjects from the board’s review.

In particular, they wrote that “the overhauled policy … holds that exempted research activities should be excused from board review with no requirement of IRB approval of the exemption.”

[Richard A. Shweder and Richard E. Nisbett, “Long-Sought Research Deregulation Is Upon Us. Don’t Squander the MomentChronicle of Higher Education, March 12, 2017.

Meyer asks, what’s new?

On March 16, Michelle N. Meyer tweeted a GIF showing that several of the provisions cheered by Shweder and Nisbett have been part of the regulations for decades. Indeed, since 2009, OHRP has grudgingly acknowledged that the Common Rule allows researchers to make exemption determinations. The problem has been persuading universities to take advantage of these longstanding provisions.

On the other hand, Meyer notes that the liberation of oral history is new, and that the exemption for “benign behavioral interventions” is, in her terms, “new & awesome.”

(GIF re-posted here with Meyer’s permission.)

Comments posted to the Chronicle website made similar points.

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

Missing Genes Point to Possible Drug Targets

Every person’s genetic blueprint, or genome, is unique because of variations that occasionally occur in our DNA sequences. Most of those are passed on to us from our parents. But not all variations are inherited—each of us carries 60 to 100 “new mutations” that happened for the first time in us. Some of those variations can knock out the function of a gene in ways that lead to disease or other serious health problems, particularly in people unlucky enough to have two malfunctioning copies of the same gene. Recently, scientists have begun to identify rare individuals who have loss-of-function variations that actually seem to improve their health—extraordinary discoveries that may help us understand how genes work as well as yield promising new drug targets that may benefit everyone.

In a study published in the journal Nature, a team partially funded by NIH sequenced all 18,000 protein-coding genes in more than 10,500 adults living in Pakistan [1]. After finding that more than 17 percent of the participants had at least one gene completely “knocked out,” researchers could set about analyzing what consequences—good, bad, or neutral—those loss-of-function variations had on their health and well-being.

Gene knockouts are expected to occur more frequently in certain countries, such as Pakistan, where people sometimes marry and have children with their first cousins. That makes it much more likely that a person carrying a loss-of-function gene variation will have inherited that same variation from both of their parents.

In the latest study, a team led by Sekar Kathiresan at the Broad Institute of Harvard and MIT, Boston, turned to the Pakistan Rise of Myocardial Infarction Study (PROMIS) in hopes of finding more gene knockouts.

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 moral bioenhancement of psychopaths

Guest Post: Elvio Baccarini and Luca Malatesti

Paper: The Moral Bioenhancement of Psychopaths

We argue that the prescription of mandatory moral bioenhancement (from now on MB) of psychopaths is justified because it satisfies the requirement of public reason as elaborated in political philosophy. This is the requirement that a moral or political prescription should be justifiable to all those persons over whom the prescription purports to have authority.

We maintain that, in this case, a notion of open justification is appropriate to state the requirement of public reason. An open justification of a prescription addressed to an agent is a reasoning grounded on premises that consider the system of reasons (such as beliefs, preferences, etc.) of that agent. Thus, it could be said that this type of justification has an internal dimension, given that it considers reasons that are endorsed by the agent. However, an open justification has also an external dimension. This type of justification does not require that the agent is aware or accepts all its inferential steps. It requires, instead, that she would be aware or accept them by reasoning correctly from her system of reasons. Furthermore, we argue that the mandatory MB is openly justified to psychopaths.

We are aware of the controversies about the MB of psychopaths that stem from empirical and theoretical issues concerning the robustness of the construct of psychopathy and the validity of different diagnostic measure, the specific nature of their differences with non-psychopathic agents and the availability of safe and reliable biomedical treatments.  We think, however, that it is meaningful investigating the moral significance of the application of present or proximate future scientific research on the enhancement of individuals with antisocial conditions.

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

Fighting Parasitic Infections: Promise in Cyclic Peptides

Caption: Cyclic peptide (middle) binds to iPGM (blue).
Credit: National Center for Advancing Translational Sciences, NIH

When you think of the causes of infectious diseases, what first comes to mind are probably viruses and bacteria. But parasites are another important source of devastating infection, especially in the developing world. Now, NIH researchers and their collaborators have discovered a new kind of treatment that holds promise for fighting parasitic roundworms. A bonus of this result is that this same treatment might work also for certain deadly kinds of bacteria.

The researchers identified the potential new  therapeutic after testing more than a trillion small protein fragments, called cyclic peptides, to find one that could disable a vital enzyme in the disease-causing organisms, but leave similar enzymes in humans unscathed. Not only does this discovery raise hope for better treatments for many parasitic and bacterial diseases, it highlights the value of screening peptides in the search for ways to treat conditions that do not respond well—or have stopped responding—to more traditional chemical drug compounds.

Humans, parasites, and bacteria depend on the same cellular pathway to break down glucose for energy. This life-sustaining metabolic pathway includes essentially all of the same enzymes with one notable exception: cofactor-independent phosphoglycerate mutase (iPGM). This enzyme is found in parasites and bacteria, but not in people. Yes, we humans have an enzyme that does that same job—but it does so in a different way and is assembled from an entirely different sequence of amino acid building blocks.

Given this very exploitable difference, iPGM jumped several years ago to the top of the list as a drug target that would kill disease-causing parasites without harming people.

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

Serotonin produced from neurons obtained with iPS and embryonic stem cells

Serotonin is implicated in functions as important as humour, sadness, feelings of aggression, anxiety and sleep disturbances, among others. A deficiency in serotonin release has been related with schizophrenia, depression, bipolar disorder, obsessive-compulsive disorders, chronic pain and eating disorders. All of this supports how important it is for the central nervous system to function well. Now, to facilitate “in-vitro” studies of the neurons that produce this substance, a technique has been developed that enables them to be obtained from human pluripotent cells, both embryonic and human iPS cells (Nature Biotechnology 34; 89-94, 2016). The use of human embryonic stem cells has objective ethical difficulties, but not so human iPS cells, so their use opens up a scientific and ethical avenue for the production this substance from neurons, and to take another step forward in the treatment of conditions linked to serotonin imbalance.

La entrada Serotonin produced from neurons obtained with iPS and embryonic stem cells aparece primero en Bioethics Observatory.

Source: Bioethics Observatory.

This article was originally published by the Bioethics Observatory of the Catholic University of Valencia. Up-to-date news and reports from the Bioethics Observatory at the Catholic University of Valencia (Spain), covering a wide range of bioethical issues including stem cell research, abortion, assisted suicide and much more. General interest and specialised topical articles with ethical implications, based on the latest research findings from some of the world's top medical and scientific journals.

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 ethnographic case: series conclusion by Emily Yates-Doerr

Editors note: This entry concludes the series “The Ethnographic Case” which ran every other Monday between June 2015 and July 2016. The bookCase, which holds 27 cases, can be accessed here.

One day, early on in the series, we received two submissions. Their similar anatomy was striking. Each featured a medical waiting room. Someone entered the space with a gift for the clinical personnel, the gift was accepted, and something shifted in the resulting care.

In Aaron Ansell’s case, set within gardens of an informal clinic in Piauí, Brazil, the gift was a small satchel of milk. Rima Praspaliauskiene’s was set in a Lithuanian public hospital and the gift was a rich chocolate cake. Aaron, who works and teaches on legal orders, analyzed the exchange as a challenge to hospital norms of equalitarianism. He helped us to see how the give-and-take of milk interrupts the requirements of a deracinated liberal democracy, offering instead the warm sociality of personal affinity. Rima, who focuses on medical care and valuing, used the object of the cake to query the social scientist’s impulse to explain why people do what they do. She shows us how this impulse may rest upon the linearity and equivalence of rational calculation, uncomfortably treating sociality as a commodity.

The juxtaposition of these submissions is emblematic – a case, if you will – of something we have seen throughout this series: the art of ethnographic writing resides in a relation between what is there and what is done with it.

Beginnings

We might trace the origin of the series to a business meeting at the AAAs, when we offered the idea of “the ethnographic case” for a Somatosphere series.

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

Expert Advisory Committees & Conflict of Interest

Jean-Christophe Bélisle-Pipon, Louise Ringuette, and Bryn Williams-Jones describe a five-step approach for managing conflicts of interest in public health decision-making.

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On a regular basis, shocking news filters into the media about conflicts of interest within public organizations that contribute to policy-making. When such allegations are proven true, public scepticism about whether public interests or commercial interests inform policy-making increases.

Public health decision-making, especially in areas of complex science, is generally supported by expert advice. One such area is publicly-funded immunization. In Canada, the National Advisory Committee on Immunization is an advisory body to the Public Health Agency of Canada, while the provinces and territories rely on advice from local expert advisory committees.

Members of immunization expert advisory committees have an important role to play in guiding public health decision-making, particularly with regard to the selection of vaccines and the scheduling of immunizations. Given this important role, independence and transparency are expected. One mechanism for promoting independence is a robust, publicly available conflict of interest policy.

We suggest a simple five-step approach for better managing conflicts of interest.

First, ask the right questions and identify red flags. What are the interests at stake and for whom?

For example, consider situations where one or more committee members receive(s) significant funding from industry. Are there external interests, as a result of this funding, that may influence the committee’s mandate and activities? This concern applies to private companies with products or business activities related to immunization, or with connections to certain advocacy or interest groups.

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

Lincoln in the Bardo in the Bardo/ by Russell Teagarden

Russell Teagarden is an Editor of the NYU Literature Arts and Medicine Database and helped lead the Medical Humanities elective at the School of Medicine this past winter. In this blog post, he experiments with creating a text collage from recent reviews of George Saunders novel, Lincoln in the Bardo.

Author’s note:
George Saunders is well known for his inventive and affecting short stories. Lincoln in the Bardo is his first novel, and as described by Charles Baxter in his review in the April 20, 2017 issue of The New York Review of Books, it “doesn’t resemble any of his previous books…nor does it really resemble anyone else’s novel, present or past. In fact, I have never read anything like it.” The story is told by a chorus of spirits or ghosts in a “bardo,” which is a Tibetan limbo of a sort for souls transitioning from death to their next phase. Saunders rarely gives any individual spirit more than 2 or 3 lines of dialog, and he intersperses short snippets from historical textsasome real, some notato provide contextual background. Of particular interest to the medical humanities community will be the focus on the well-trodden subject of grief through this experimental approach. The book has attracted the attention of many serious critics, so many in fact, that they can be assembled into a chorus to derive a review of the book in the book’s format. I have thus taken excerpts from published reviewsamost real, a few notato produce a review that covers how the book is laid out (I), how the bardo works (II), how the story flows (III), and how it’s critically received (IV) as can be told by a chorus of reviewers in a bardo of their own.

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.