Tag: justice

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

Critical Histories, Activist Futures: Science, Medicine and Racial Violence by Sarah Pickman

A Reframed (and Reflexive) Conference Report

Organized and Edited by Tess Lanzarotta and Sarah M. Pickman

 

After a conference ends – after the last paper coffee cup has been tossed into the trash, after the adaptor cable has been disconnected from the podium laptop, after the speakers have rushed out to catch trains and flights homeward – what then? What tangible reminders survive from the days of presentations? An individual participant may have e-mails from new professional contacts and several notebook pages filled with notes hastily jotted during the talks. Fortunate conference organizers may find some funding and support to produce an edited volume of the papers. These texts will go some way to preserving the content of the conference talks. But they will not capture all of the ideas and responses generated over the course of those few days. What about the insights that arose from conversations around the coffee table, over lunch, or the bar afterwards? Or the experiences gained planning the conference or reviewing it weeks later? Where will they all go?

This series is our attempt to capture some of the insights, suggestions, critiques and experiences from a conference entitled “Critical Histories, Activist Futures: Science, Medicine and Racial Violence,” which was held at Yale University on February 24 and 25, 2017. The conference was conceived of by the History, Science, and Justice Collective (HSJC), a group of graduate students in Yale’s Program in History of Science and Medicine working towards a more just history of science. With the CFP these students asked for submissions that not only discussed historical cases of past injustices, but would also create starting points for historically informed debates about current forms of injustice and violence, including the inequities we see in the academic field of history of science and medicine.

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

Politics of Pain: Investigating the Ethics of Palliative Care as a Global Human Right

by Alix Masters

Within the last decade, strides have been made in the field of global health policy to extend the reaches of palliative care universally.  In 2014, the World Health Organization formally declared palliative care a global human right.[1] This development in global health policy is a positive one when we consider the medical politics of pain relief across racial difference.  Both in the United States and abroad, there is a long medical history of discriminatory practices against certain groups of people with regard to pain management—including withholding necessary pain medication altogether.  Therefore, in many ways the declaration of palliative care as a human right is a necessary step in ensuring all peoples, regardless of identity, have their pain taken seriously by the medical establishment and have their comfort made a medical priority.  When we consider how different cultures negotiate beliefs around death and pain relief, however, the issue of palliative care as a universal human right becomes more complex.  For example, countries with strong histories of Buddhist thought and culture have traditionally opposed the ideology of palliative care.[26]  In Buddhism, suffering is considered an inextricable part of life and masking this suffering through medical intervention is looked down upon.[2]  For example, Vietnam, a country with a culture strongly imbued with Eastern Buddhist values, has a long history of rejecting palliative care and pain medications in general.[26]  Due to this, the World Health Organization’ declaration that palliative care is a universal human right could also be understood as a Western organization blatantly ignoring Buddhist cultural traditions.  While the declaration of palliative care as a human right is important progress in many ways, it is also important that Western medicine not impose our values globally without consideration for the complex histories and belief systems of diverse cultures.

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

“She Can’t Help The Choices She Makes”

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STUDENT VOICES | CHYNN PRIZE FIRST-PLACE WINNER

By Madeleine Cardona

I will never forget the day my mother got diagnosed. I could swear that just yesterday I was thirteen years old waiting anxiously to be called in from the waiting room of some fancy New York State doctor’s office. I was young, but I had some idea of what was going on. I knew my parents and I were there because they were going through a divorce and fighting for custody of me. What I did not know was that we were about to endure a court-ordered psychiatric evaluation and that the results were going to change my life forever.

“Madeleine, your mom is very sick,” the psychiatrist attempted to explain to me. I did not understand. I did not know a sick person could look perfectly healthy. “It’s not a physical sickness, it’s in her head. She has a mental disorder called Paranoid Schizophrenia.” She went on using big words to explain how my mother’s brain “wasn’t like other people’s brains.” I sat there listening closely, hanging on every word the woman was saying to me. “She can’t help the choices that she makes, it’s not her fault that she is the way that she is. She needs help.” Every day since that day in the doctor’s office, that remark replays in my head over and over. “She can’t help the choices she makes.”

That is what gave me the most trouble. I sat around for years and years watching the choices that my mother was making, unable to intervene.

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 Neuroethics Blog Series on Black Mirror: White Bear

By Kristie Garza
Image courtesy of  Wikimedia Commons.

Humans in the 21st century have an intimate relationship with technology. Much of our lives are spent being informed and entertained by screens. Technological advancements in science and medicine have helped and healed in ways we previously couldn’t dream of. But what unanticipated consequences of the rapid expansion into new technological territory? This question is continually being explored in the British sci-fi TV series Black Mirror, which provides a glimpse into the not-so-distant future and warns us to be mindful of how we treat our technology and how it can affect us in return. This piece is part of a series of posts that discuss ethical issues surrounding neuro-technologies featured in the show and will compare how similar technologies are impacting us in the real world. 



*SPOILER ALERT* – The following contains plot spoilers for the Netflix television series Black Mirror. 

Plot Summary


“White Bear” begins with Victoria, the episode’s main character, awakening in an unfamiliar room in front of a TV displaying an unfamiliar symbol. She has no memory of who she is or how she wound up in the room.
Afraid, Victoria begins to explore her outside surroundings, where she finds “onlookers,” individuals in a trance-like state, filming her with their phones. A masked man then appears and begins chasing Victoria. While fleeing, she meets Jem, a fellow individual not under the trance. Jem explains to Victoria that the onlookers were put in their trance due to the strange symbol on the screens and that the masked man is a “hunter,” part of an evil people not affected by the strange symbol.

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

‘Being a burden’: a illegitimate ground for assisted dying

The issue of the legality in England and Wales of physician-assisted suicide has recently been revisited by the Court of Appeal. Judgment is awaited. The judgment of the Court of Appeal, granting permission for judicial review, is here.

The basic issue before the Court of Appeal was the same as that in Nicklinson v Ministry of Justice and R (Purdy) v DPP: does the right to determine how one lives ones private life (protected by Article 8 of the European Convention on Human Rights)  confer a right to have an assisted death?

Many factors have been said to be relevant to decisions about assisted dying. They include are intractable pain (rather a weak criterion, given modern palliative methods), hopeless prognosis – likely to result in death in a short time, and simple autonomy (‘It’s my right to determine where, when, and in what circumstances I end my life, and that’s an end of the matter’). One factor, commonly in the minds of patients asking for help in ending their lives, but rarely mentioned by advocates of assisted dying, is that the patient feels that she is a burden to her family and carers.

A recent systematic review of the literature concluded that 19-65% of terminally ill patients felt that they were a burden to others.  The 2016 Report relating to the Oregon Death with Dignity Act  concluded that 48.9% of patients whose lives were ended under the Act cited seeking an assisted death cited ‘being a burden’ as one of their concerns.

Concern about being a burden should not be a criterion to which any law relating to assisted dying should be permitted to have regard.

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

CAR-T cells: A drive to the future of cancer treatment

Conrad Fernandez describes the ethical challenges related to the use of CAR T-cell therapy for cancer patients.

__________________________________________

I am a pediatric oncologist and over the years have looked after hundreds of children with cancer – ranging in age from newborns into their early 20s. About a third of these children have suffered from leukemia. During my career of more than 25 years, I have seen my share of sadness and joy. Roughly one in five of these children have died – most often because of resistance intrinsic to their cancer but sometimes as a consequence of the toxicity of cancer therapy. These toxicities may occur acutely during the treatment (such as severe infections) or more insidiously appear years or decades later. A novel treatment approach that would overcome this resistance while avoiding chemotherapy toxicity would be most welcome.

A few years ago, I sat in a plenary session of the American Society of Hematology annual meeting (the preeminent hematology meeting in the world) where early phase CAR T-cell therapy was discussed. CAR (chimeric antigen receptor) T-cells are genetically reprogrammed immune cells that normally have the job of fighting infection or other foreign intruders into our bodies. CAR T-cells are manufactured to target a subtype of leukemia that is called B-cell leukemia – a type especially common in childhood. I thought to myself to take special note of what I was hearing, as this marked the potential for a paradigm shift in how we approached treatment of leukemia and perhaps other cancers. It is for these relapsed and refractory B-cell leukemia patients that the FDA’s Oncologic Drugs Advisory Committee (ODAC) has just recommended approval of CAR T-cell therapy – the first recommendation for approval of its kind.

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

CAR-T cells: A drive to the future of cancer treatment

Conrad Fernandez describes the ethical challenges related to the use of CAR T-cell therapy for cancer patients.

__________________________________________

I am a pediatric oncologist and over the years have looked after hundreds of children with cancer – ranging in age from newborns into their early 20s. About a third of these children have suffered from leukemia. During my career of more than 25 years, I have seen my share of sadness and joy. Roughly one in five of these children have died – most often because of resistance intrinsic to their cancer but sometimes as a consequence of the toxicity of cancer therapy. These toxicities may occur acutely during the treatment (such as severe infections) or more insidiously appear years or decades later. A novel treatment approach that would overcome this resistance while avoiding chemotherapy toxicity would be most welcome.

A few years ago, I sat in a plenary session of the American Society of Hematology annual meeting (the preeminent hematology meeting in the world) where early phase CAR T-cell therapy was discussed. CAR (chimeric antigen receptor) T-cells are genetically reprogrammed immune cells that normally have the job of fighting infection or other foreign intruders into our bodies. CAR T-cells are manufactured to target a subtype of leukemia that is called B-cell leukemia – a type especially common in childhood. I thought to myself to take special note of what I was hearing, as this marked the potential for a paradigm shift in how we approached treatment of leukemia and perhaps other cancers. It is for these relapsed and refractory B-cell leukemia patients that the FDA’s Oncologic Drugs Advisory Committee (ODAC) has just recommended approval of CAR T-cell therapy – the first recommendation for approval of its kind.

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

India Supreme Court Declares Right to Privacy

This week, the Supreme Court of India ruled that privacy is a fundamental right.


While not framed as a right to die case, at least one concurring justice observed: “An individual’s rights to refuse life prolonging medical treatment or terminate his life is another freedom which fall within the zone of the right of privacy.”


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.