Tag: children

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

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 News

Judge Opens Door for Lawsuit Over Girl Declared Brain Dead

September 8, 2017

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Alameda County Judge Stephen Pulido ruled Tuesday that it’s up to a jury to determine whether Jahi McMath is alive, which would increase the damages jurors could award if they determine doctors at Children’s Hospital in Oakland botched a routine operation to remove the girl’s tonsils.

In California, non-economic damages such as pain and suffering are capped at $250,000 for medical malpractice. But juries can award unlimited economic damages far above that cap for ongoing medical care, which Jahi’s family could not claim if she were declared dead.

Jahi’s case has been at the center of national debate over brain death since the girl’s mother refused to remove her daughter from life support after doctors declared the then-13-year-old dead after surgery in December 2013.

… Read More

Image: By Blcksx – I took this photograph while visiting Riverside, CC BY-SA 3.0, https://en.wikipedia.org/w/index.php?curid=44291738

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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

Surrogacy opposed by leading English feminist. In Asia to find poor women who allowed themselves to be inseminated to provide children

Julie Bindel is an English lesbian feminist born in 1962, who British newspaper the “Independent” included on its 2010 list of the 101 most influential gay and lesbian people in Great Britain. Although she has not been an activist for same-sex marriage (because she believes that the State should not regulate these marriages), she says that she is indignant that some women are considered worthless or inferior. It is therefore clear to her that the surrogacy industry damages women and children, and she says that it should not be legalized in any country. She also warns that it can never be justified under the cover of “altruistic” cases, which are a mere trick to legitimize a million dollar business. She had been in India (see her statment *) and Cambodia visiting India’s surrogacy clinics to find out about the situation of poor women who allowed themselves to be inseminated and impregnated to provide children to “rich white Westerners”. She is now collaborating with the international platform “Stop Surrogacy Now” (surrogacy international campaign to avoid it), and together with other activists has visited Spain to ask that the country maintain its laws that do not recognize any type of gestational surrogacy (See HERE ).

  • I decided to visit four clinics in Gujarat, one of India’s most religious states – known as the country’s surrogacy capital – posing as a woman interested in hiring a surrogate and egg donor to gain access to those providing the services. I wanted to be able to speak from experience about the human rights abuses that result from the practice, and to become more involved in the international campaign to abolish it (The Guardian).

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 Blogs

In the Journals – August 2017 by Livia Garofalo

Here is the article round-up for August, put together in collaboration with Ann Marie Thornburg.  There is a special issue section of Social Science and Medicine out this month on Austerity, Health, and Wellbeing (abstracts below). Also of note is a recent ‘Takes a Stand’ statement on the End of AIDS published in Global Public Health by Nora Kenworthy, Richard Parker, and Matthew Thomann. You can take advantage of the article being temporarily free access and on early view here. Enjoy!

 

Cultural Anthropology (Open Access)

Tangles of Care: Killing Goats to Save Tortoises on the Galápagos Islands

Paolo Bocci

If calls to care for other species multiply in a time of global and local environmental crisis, this article demonstrates that caring practices are not always as benevolent or irenic as imagined. To save endemic tortoises from the menace of extinction, Proyecto Isabela killed more than two hundred thousand goats on the Galápagos Islands in the largest mammal eradication campaign in the world. While anthropologists have looked at human engagements with unwanted species as habitual and even pleasurable, I discuss an exceptional intervention that was ethically inflected toward saving an endemic species, yet also controversial and distressing. Exploring eradication’s biological, ecological, and political implications and discussing opposing practices of care for goats among residents, I move past the recognition that humans live in a multispecies world and point to the contentious nature of living with nonhuman others. I go on to argue that realizing competing forms of care may help conservation measures—and, indeed, life in the Anthropocene—to move beyond the logic of success and failure toward an open-ended commitment to the more-than-human.

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 GIRL with the DNR TATTOO

If you are in Minneapolis on November 10, check out “The GIRL with the DNR TATTOO” by Nneka Sederstrom, the head of ethics at Children’s Hospitals and Clinics of MN.


Her talk will look at the complexities of autonomous decision making and end of life through the eyes of a young adult expressing her wishes in the form of a tattoo. 
What truly is a patient’s right to self-determine? 
Can an advance directive take any form?

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.