Tag: power

Bioethics Blogs

More than Local Arrangements: How Conference Logistics Can Speak to Values by Sarah Pickman

In the fall of 2016, my colleagues Tess Lanzarotta, Marco Ramos, and I met as the core organizers for the “Critical Histories, Activist Futures” conference to hammer out our individual roles. We decided that I would take on the role of head of local arrangements, managing all of the practical logistics for the conference: food, room reservations, registration, etc. “Local arrangements” is, at first glance, a series of crucial but unsexy grunt work tasks. Perhaps, at this very moment, images from your own past of stacking folding chairs and wrestling with projector cords are beginning to swirl in your head at the mention of this phrase. Before you roll your eyes and click away, let me try to convince you that local arrangements can be a productive space to think about what an academic conference looks like and who it is for, as well as to grapple with the limits of the conference as a model for academic discourse.

I embraced the role initially because I do feel strongly that in order for an event to achieve its objectives, the mundane aspects must be taken care of and must run as seamlessly as possible. Prior experience organizing events has taught me that no matter how interesting and well-presented a symposium or lecture’s content is, if there is not enough food served afterwards or the room is very cold that’s all anyone will talk about. This is to say nothing of my own personal experience as a graduate student, scooping up free sandwiches at events and watching my professors race each other to the coffee dispenser during break times.

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

Neuroethics as Outreach

By Adina Roskies
Adina Roskies is The Helman Family Distinguished Professor of Philosophy and chair of the Cognitive Science Program at Dartmouth College. She received a Ph.D from the University of California, San Diego in Neuroscience and Cognitive Science in 1995, a Ph.D. from MIT in philosophy in 2004, and an M.S.L. from Yale Law School in 2014. Prior to her work in philosophy she held a postdoctoral fellowship in cognitive neuroimaging at Washington University with Steven Petersen and Marcus Raichle from 1995-1997, and from 1997-1999 was Senior Editor of the neuroscience journal Neuron. Dr. Roskies’ philosophical research interests lie at the intersection of philosophy and neuroscience, and include philosophy of mind, philosophy of science, and ethics. She has coauthored a book with Stephen Morse, A Primer on Criminal Law and Neuroscience

As I write this, I am thinking more broadly about ethics and neuroscience than I usually do, pushed by political necessity. The topic of my concern is science education, construed generally. In this era in which “alternative facts” are allowed to bear that name, rather than their true name — which is “lies and misinformation” — and in which science is ignored, deemed irrelevant, or actively suppressed, I see a growing need for people in all the sciences and in ethics to speak out and to educate, wherever possible.

Neuroscientists and neuroethicists may actually have an easier time doing this than many scientists whose work has either been so politicized that they have no voice, such as people working on climate change or other environmental issues, or whose research is taken to be so esoteric that it is hard to get ordinary people to care (though much of it, like gravity waves, is really cool!).

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

Beauty’s Knowledge: Hawthorne’s Moral Fable “Rappaccini’s Daughter” by Leo Coleman

Nathaniel Hawthorne’s story “Rappaccini’s Daughter” is a nineteenth-century moral fable that sets the fruits of experimental knowledge against obligations to humanity, and stages a dramatic encounter between these two apparent goods. In many ways, the moral it offers seems familiar, and could be recognized by anyone with even a passing familiarity with contemporary bioethical debates. It features a mad scientist’s garden, a gorgeous but poisonous plant of his creation, and a lovely daughter who tends to his terrible plants, and who is—like the plant—both attractive and potentially infectious. The daughter receives the attentions of a naïve medical student, and she falls in love with him, but their fate is shadowed by the actions of not one but two bad scientist father-figures who experiment upon the younger characters and try to shape their (biological) destinies without their knowledge. But Hawthorne’s story does not simply anticipate, in an antique and allegorical way, contemporary defenses of human dignity and nature’s inviolability. Nor does it merely rehearse, with its private garden and unknowingly experimented-upon subjects, a Lockean notion of our own inevitable and natural possession of our bodies and the fruits of our lives and labor.

Hawthorne’s story puts the experimental subject at the center of its moral allegory, suffering both hopes and fears provoked by her own mutability, her own biological plasticity. That is, his titular character is no innocent pawn in the hands of the great scientist: she is an artificial being—grafted and forced—and deeply morally and biologically transformed from the very beginning; but because of this she is also able to reflect on her relations with others and her environment, and to mark (in this case, tragically) a new ethical frontier.

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

Paolo Macchiarini, Fraud, and Oversight: A Case of Falsified Stem Cell Research

by Michael S Dauber, GBI Visiting Scholar

According to a recent story by John Rasko and Carl Power in The Guardian, surgeon Paolo Macchiarini’s research in artificial windpipes, previously hailed as pioneering medicine with the promise to save many lives, has been exposed as a fraud. Miacchiarini had previously received public praise for creating artificial windpipes by grafting stem cells onto plastic frames, which allowed him to “grow” new trachea for his patients.

While much of the scientific community was eager to believe Miaccharini had made significant breakthroughs, not everyone was convinced. According to a Swedish TV series called Experimenten, most of Miaccharini’s patients died within a few years of their procedures, and it was unclear that the experimental surgeries actually helped: in fact, they may have made matters much worse. Deeper investigation revealed that Macchiarini had actually falsified much of his data, and that institutional checks that normally prevent fraudulent individuals from being hired had been ignored. For example, according to an “external inquiry,” he was hired by the Karolinska Institute in 2010 despite various fraudulent, concerning, and questionable information on his resume (including a claim from a reference that he had been “blocked from a professorship in Italy”). The report also found that there had been inappropriate contact between Macchiarini and the Karolinska Institute’s Vice-Chancellor during his recruitment.

Even more troubling, the Institute failed to comply with government regulations designed to ensure research and clinical interventions are practiced ethically. According to Rasko and Power, Macchiarini failed to test his artificial airways in animals before implanting them in three human patients, and he did not apply for approval from an institutional review board or other ethics committee, despite the fact that Stockholm’s board was housed at the Institute.

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

Robotic Exoskeleton Could Be Right Step Forward for Kids with Cerebral Palsy

More than 17 million people around the world are living with cerebral palsy, a movement disorder that occurs when motor areas of a child’s brain do not develop correctly or are damaged early in life. Many of those affected were born extremely prematurely and suffered brain hemorrhages shortly after birth. One of the condition’s most common symptoms is crouch gait, which is an excessive bending of the knees that can make it difficult or even impossible to walk. Now, a new robotic device developed by an NIH research team has the potential to help kids with cerebral palsy walk better.

What’s really cool about the robotic brace, or exoskeleton, which you see demonstrated above, is that it’s equipped with computerized sensors and motors that can detect exactly where a child is in the walking cycle—delivering bursts of support to the knees at just the right time. In fact, in a small study of seven young people with crouch gait, the device enabled six to stand and walk taller in their very first practice session!

For people with cerebral palsy, crouch gait is now treated with a variety of approaches, often including wearing orthotic ankle braces that help to stabilize their legs. Still, about half of kids with cerebral palsy can’t walk by early adulthood. Their muscles simply can’t keep up with their growing bodies.

That’s led to development of many robotic training devices, though most are still restricted to use in a supervised clinical setting. In the new study, led by Thomas Bulea at the NIH Clinical Center in Bethesda, MD, the team wanted to develop a wearable system for potential home use to help keep more kids walking as they grow into adulthood.

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

Transhumanism. Error of the gods and the power of man? A phylosofical approach

Technological progress urgently needs the emergence of moral progress so that the spark of reason does not consume the existence of humankind

The technical skills of humans have always been remarkable throughout history, so much so that, even now, the artifacts of classical antiquity leave us astounded at the ingenuity of man. Those who are familiar with the Antikythera mechanism (see video HERE) can attest to the fact that the complexity of this computing system, devised to calculate the movement of the stars, is staggering. The wonder that our creations elicit in us might make us think that the creative and technical ability that characterizes us has a divine origin.

It was Plato, among others, who described in his Protagoras, and put into the mouth of the famous Athenian sophist, the myth of the formation of man. In it, the gods forge the mortal races from other gods that have not yet finished forming in the elements of earth and fire. Thus, the gods command the brothers Prometheus and Epimetheus to capture these incomplete gods and divide their abilities to distribute them among the mortal races. Hence, the link of the mortal races with the gods is obvious according to the myth, because they are formed from the fragments of incomplete gods.

Epimetheus asks Prometheus to allow him to take charge of the formation of the new races, and distributes the fragmented abilities. His intention is to create a balance between the new beings so that they do not destroy each other. Those that enjoy some advantage over the rest are surpassed by others in another aspect.

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

FDA Approves First CAR-T Cell Therapy for Pediatric Acute Lymphoblastic Leukemia

Caption: Cancer survivor Emily Whitehead with her dog Lucy.
Credit: Emily Whitehead Foundation

Tremendous progress continues to be made against the Emperor of All Maladies, cancer. One of the most exciting areas of progress involves immunotherapy, a treatment strategy that harnesses the natural ability of the body’s own immune cells to attack and kill tumor cells. A lot of extremely hard work has gone into this research, so I was thrilled to learn that the Food and Drug Administration (FDA) just announced today its first approval of a promising type of immunotherapy called CAR-T cell therapy for kids and young adults with B-cell acute lymphoblastic leukemia (ALL)—the most common childhood cancer in the U.S.

ALL is a cancer of white blood cells called lymphocytes. Its treatment with chemotherapy drugs, developed with NIH support, has transformed ALL’s prognosis in kids from often fatal to largely treatable: about 90 percent of young patients now recover. But for those for whom the treatment fails, the prognosis is grim.

In the spring of 2012, Emily Whitehead of Philipsburg, PA was one such patient. The little girl was deathly ill, and her parents were worried they’d run out of options. That’s when doctors at Children’s Hospital of Pennsylvania, Philadelphia, gave Emily and her parents new hope. Carl June and his team had successfully treated three adults with their version of CAR-T cell therapy, which is grounded in initial basic research supported by NIH [1,2]. Moving forward with additional clinical tests, they treated Emily—their first pediatric patient—that April. For a while, it was touch and go, and Emily almost died.

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

On Plastic Reason by Tobias Rees by Setrag Manoukian

Plastic Reason: An Anthropology of Brain Science in Embryogenetic Terms

by Tobias Rees

University of California Press, 2016, 352 pages

 

Plastic Reason is an excellent occasion to reflect on the relationship between poetry and science.

One might feel the proverbial contrastive tension in naming together poetry and science, a tension one finds in certain intellectual habits that foreground a distinction between human and non-human sciences, or in postures that romantically juxtapose the supposed freedom and creativity of poetry with the hard realities of science (social sciences included). However, at closer scrutiny, this tension reveals itself as an exciting site of possible conversations, to the extent that one might even end up arguing that there cannot be poetry without science, nor science without poetry. After all, the Italian philosopher Giambattista Vico (1668-1744) made a forceful case for the necessity of poetry in the “history of human nature,” conceptualizing poetic knowledge as the fundamental articulation of humans’ changing relationship with the world. Vico distinguished poetic knowledge from the sciences of nature, however this distinction was for him historical and relational, not absolute, with the understanding that, whatever humans might be, they could not be thought without both poetry and science.

Rees’s book is foremost an engagement with plastic conceptions of the brain, but as the author wrote me in a recent email exchange, it is also “concerned with a form of poetry.” So I began to read Plastic Reason asking myself what was this form of poetry, and whether the book could provide useful leads to think poetry and science together.

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

Françoise Baylis and Carolyn McLeod (eds), Family-Making: Contemporary Ethical Challenges, Oxford University Press, 2014

This fascinating anthology focuses on the question of how we make families, and how bionormative assumptions shape or distort our collective thinking about parenting, children’s welfare, and state obligations to parents and children. The editors are primarily interested in the question of whether parents’ moral responsibilities toward children differ for children produced through assistive reproductive technologies (ART) compared to children brought into the family via adoption. As the editors point out, in the realm of ART, most of the philosophical literature has been focused on parental autonomy and rights to assistance in reproducing, while the adoption literature is almost entirely focused on the protection of children. The anthology does an excellent job of exploring this disconnect, and probing assumptions about moral responsibilities within family-making. Taken as a whole, the chapters explore “whether people should rely on others’ reproductive labour in having children, whether they should ensure that they will have a genetic tie to their children or that their children will have some connection to genetic relatives, whether they should bring a new child into the world at all, whether they should agree to what the government would require of them for an adoption, where they should live if the family they make is multi-racial, at what age they should forgo having children, and the list goes on” (6).

The first section of the book sets the stage with two excellent chapters on the goods of parenting (Harry Brighouse and Adam Swift) and the goods of childhood (Samantha Brennan). The goods of parenting are distinguished from other related goodsintimacy with another adult or friend, friendship with a child, being an uncle, having a pet, etc.

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 Disability Studies in the Era of Trump by Pamela Block

In spring semester of 2017 we (Pam Block and Michele Friedner) co-taught the graduate course “Conceptual Foundations of Disability Studies.” Though the readings were the same as in previous iterations of the course, the emphasis and tone of the class shifted, not just because of the co-teaching but because we were now teaching in a context in which the rights and lives of disabled people are at increased risk. This essay will focus on one class session devoted to a discussion of how disability studies and eugenics are strikingly intertwined in some ways, and why it is salient and important to think about eugenics in the present moment, especially in relation to the current United States presidency.

Eugenics opens up a way to talk about immigration; traits and qualities of and in people; desirability; deservedness; “good” and “bad” science; and the making of facts. Eugenics comes to mind when we think of silencing and containing nasty women and ejecting bad hombres. While we are not arguing that Trump himself advocates eugenics, we argue that a study of the history of eugenics offers an entry point to considering the emergence of past and present norms and normals, especially in relation to perspectives on bodily variation. We also think that a discussion of eugenics affords different ways of conceptualizing what disability studies scholars Snyder and Mitchell (2010) call “able-nationalism,” (riffing off of Puar’s (2007) work on homonationalism). That is, a discussion of eugenics allows for consideration of how disability—and the values attached to it– is mobilized in different time periods, in the service to the nation.

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.