Tag: resource allocation

Bioethics Blogs

The Moral of the Case of Charlie Gard: Give Dying Patients Experimental Treatment … Early

The tragic case of Charlie Gard has captured the imagination of social media, the Pope and President Trump. All of Charlie’s legal options appear to have been exhausted so, despite the tsunami of opinion, it looks like treatment will be withdrawn, barring some act of God or other authority.

I argued back in April  and then in May that it would be reasonable to give Charlie a trial of experimental treatment for a fixed period, say 6 months. The treatment was not going to make him worse and there was a non-zero possibility of some improvement. At the end of 6 months, his progress could have been reviewed and a decision then made to withdraw treatment if no significant progress had been made. I argued that we can’t be certain that his life is not worth living and we can’t be certain treatment will lead to zero improvement. I argued that the costs – 6 months of sedation and analgesia, with limited amounts of suffering associated with medical procedures, was arguably worth taking. That course was not taken.

Worst of All Possible Worlds

Charlie was born in September 2016. He was admitted to hospital in October. By January 2017, his mother had identified an experimental treatment (nucleoside replacement therapy) available in the US.

By April 2017, the Gards had crowd-sourced £1.2million to take Charlie to the US for experimental therapy. However, a judge ruled life is not in his best interests. He must die. Numerous appeals were lodged, and lost, all the way up to the European Court of Human Rights.

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

Confronting Medicine in the Holocaust & Beyond

By Hedy S. Wald

Galilee, Israel, May 7-11, 2017. I was privileged to be at the Second International Scholars Workshop on “Medicine in the Holocaust and Beyond.” Why so meaningful?  Why so needed? 140 purposeful, passionate scholars from 17 countries delved into the past history of medicine at its worst in order to inform the future.  From 1933-1945, presumed healers within mainstream medicine (sworn to uphold the Hippocratic Oath) turned into killers (1).  Yes, medical ethics in Nazi-era medical school curricula existed, yet included “unequal worth of human beings, authoritative role of the physician, and priority of public health over individual-patient care”(2).  In Western Galilee College, (Akko), Bar-Ilan University Faculty of Health Sciences (Safed), and Galilee Medical Center and Ghetto Fighters’ Museum, (both in Nahariya), historians, physicians, nurses, medical and university educators, medical students, ethicists and more gathered to grapple with this history and consider how learning about medicine in the Holocaust can support healthy professional identity formation with a moral compass for navigating the future of medical practice with issues such as prejudice, assisted reproduction and suicide, resource allocation, obtaining valid informed consent, and challenges of genomics and technology expansion (3)…

The conference, in essence, served as a lens for the here and now, reinforcing my contention (and others’) that history of medicine in the Holocaust curricula including confronting the Nazi physicians’ and scientific establishment’s euthanasia of “lives unworthy of life,” forced sterilizations, horrific experimentation on their victims, and medicalized genocide (leading to the destruction of a third of the European Jewish population and many others) is a “moral imperative” in healthcare professions education (1,4).

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 News

A New Edition of Social Science & Medicine Is Now Available

February 24, 2017

Social Science & Medicine (vol. 175, 2017) is available online by subscription only.

Articles Include:

  • Equity in Healthcare Resource Allocation Decision Making: A Systematic Review” by Haylee Lane et al.
  • Effects of Donor Proliferation in Development Aid for Health on Health Program Performance: A Conceptual Framework” by Sarah Wood Pallas and Jennifer Prah Ruger
  • Monitoring Income-Related Health Differences Between Regions in Great Britain: A New Measure for Ordinal Health Data” by Paul Allanson
  • The Weight of Inequalities: Duration of Residence and Offspring’s Birthweight Among Migrant Mothers in Sweden” by Sol P. Juárez and Anders Hjern
  • Patient Agency and Contested Notions of Disability in Social Assistance Applications in South Africa” by Gabrielle Kelly

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

What happens to the leftovers? Is compassionate transfer ethical?

by Katarina Lee

The Washington Post recently published an article discussing IVF and one woman’s journey in the creation of her child.[1] Unlike other articles that often focus on the process of IVF, Sarika Chawla highlighted an often forgotten and diminished aspect of IVF, the obligations to “left-over” embryos. Chawla discussed five options for these embryos: (1) destroy them; (2) donate them to medical research; (3) donate them to an infertile woman; (4) keep them frozen; and (5) engage in compassionate transfer. While Chawla did not address a sixth option in her article, it should be noted that there are also fertile women who will gestate “left-over” embryos out of a sense of moral and often religious obligation.

IVF not only poses financial and physical tolls on intended parent(s), but it places an enormous emotional burden on the parties involved. In the excitement and desire to have children, many individuals often over-look questions regarding “left-over” embryos. In any given round of IVF, several ovum are fertilized resulting in several embryos. While standards are consistently in flux, typically two embryos are transferred at a time. This leaves several frozen embryos as “back-up” if the previous transfers are unsuccessful. Many intended parent(s) choose not to address what will happen to the remaining embryos until after family completion, but by then they are left with embryos they often consider to be future children and siblings to their live-birth children. While the accurate number of frozen embryos is unknown due to lack of reporting requirements, in 2011, it was estimated that there were more than 600,000 in the US.

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

Now Accepting Applications: Fordham/Santander Universities International Student Scholarship in Ethics Education

The 2016 Fordham/Santander Universities International Student Scholars

The application period for scholarships to attend Fordham University’s intensive three-day interdisciplinary ethics graduate course is now open! The course, or workshop, will be held May 23 – 25, 2017 at Fordham University, New York City, USA!

The Fordham/Santander Universities International Student Scholarship in Ethics Education provides direct financial support for international students who wish to pursue graduate-level study in Fordham University’s Master’s in Ethics and Society program.

Students who apply to the program through the scholarship complete the workshop titled, “CEED 6100: Theories and Applications in Contemporary Ethics” which is designed to provide cross-disciplinary perspectives on moral theory and applied ethics. Using a team-teaching approach, this course brings together faculty from at least six different disciplines to integrate foundational knowledge about moral theory from the humanities and sciences with contemporary applications and social issues.

The scholarship covers:

  • Tuition: The cost of tuition for the graduate courses and administrative fees.
  • Travel: Applicants may request funding for travel to New York City Applications should include estimates of costs, including the source for the estimate (e.g., airline website, travel agency).
  • Lodging: As part of the scholarship, housing may be provided to funded students at one of Fordham’s graduate student housing facilities.

Applications for are due March 15, 2017.

2016 Workshop Papers from Santander Scholars

Cheryl Chin: “An exploration of how healthcare clinicians have become constrained into behaving inhumanely in the context of modern healthcare and what can be done to remedy this trend”

Cornelius Ewuoso: “Institutional Norms, Moral Values and Patient’s Cultural/Religious Preferences: Overcoming Moral Distress in Physician-Patient Relationship”

Agata Ferretti: “Should there be a reproductive global market?

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

Welcome Fall 2016 Master’s Students!

The Ethics and Society blog is delighted to welcome the following candidates to Fordham University’s Master of Arts in Ethics and Society:

Kelly Collins

Kelly Collins graduated in 2011 with a BS in Philosophy and Political Science from Florida State University.  After moving to New York City shortly after graduation, she began working as a legal assistant in a well-known international law firm.  While pursuing her MA in Ethics and Society, Kelly hopes to utilize real-world skills to analyze and reflect upon today’s moral dilemmas.

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Tim Colvin

Tim Colvin is currently a senior at Fordham University from Kings Park, New York. He is a dual major in Political Science and Classical Civilization with a minor in Philosophy. Tim is interested in attending law school and hopes to apply a background in ethics in practice after completing the MA in Ethics and Society.

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Margaret Desmond

Margaret Desmond completed her BA in Anthropology and Philosophy at Fordham University. She has worked at Catholic Charities Refugee Resettlement Office, the Museum of Jewish Heritage, and the Bronx Oncology Living Daily Program during her time in New York. Margaret joined the Center for Ethics Education as a graduate assistant this fall and will also be completing her MA in Ethics and Society. With her interest in medicine and background in archaeology, Margaret hopes to explore the ethical issues of these different disciplines while in the program.

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Yohan Garcia

Yohan Garcia is a Fordham University student from Puebla, Mexico. He earned an Associate’s Degree from the Borough of Manhattan Community College in Business Management, and a BA in Political Science from Hunter College.

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

Conference Report: The Humanization of Health Sciences through Innovation in Health Professions Education by Thomas Cousins

Brocher Foundation, May 2016

Introduction

This three-day event took place at the Brocher Foundation Institute, Geneva, from May 17-20 2016, and was generously funded by a Brocher Foundation award. The organising team included Berna Gerber, Thomas Cousins, and Lizahn Cloete (Stellenbosch University), Megan Wainwright (University of Cape Town), Michelle Pentecost (University of Oxford), Ferdinand Mukumbang (University of the Western Cape) and Guddi Singh (Medact, UK).

Just down the road from the Villa Diodati where 200 years of Shelley’s Frankenstein was being commemorated (“a mythic expression of the anxieties of a world confronted with the growing power of science and technology”), a group of 25 scholars gathered at the Fondation Brocher. We had reason to consider anew the ways in which humanities and medicine might be reconciled, learned, and applied in ex-centric contexts between the global south and north, where distinctions between war and everyday life are constantly blurred. Our aim in bringing together a range of scholars from around the world and across many disciplinary — and transdisciplinary! — homes, was to consider new ways of bringing together humanities and social science knowledges with the training of health professionals.

The conversation emerged out of a network of practitioners and researchers interested in health professions education, starting at a workshop on “Building the Critical Health Social Sciences in Malmesbury, South Africa in 2015 organized by Chris Colvin (UCT) and Hayley MacGregor (Sussex), and taken forward at a second meeting with colleagues from around South Africa in March 2016 at the University of Stellenbosch. The Geneva conference covered three broad themes: (1) Health Sciences Curricula in Practice: Experiences of Teaching and Learning; (2) Critical theory and new pedagogies and (3) Praxis and theory: towards integration.

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

New Frontiers in Animal Research Neuroethics at the Center for Neuroscience and Society

By Tyler M. John

Tyler John is a postbaccalaureate fellow at the National Institutes of Health Department of Bioethics interested in resource allocation, animal ethics, and moral theory. This fall, he will begin a PhD in Philosophy at Rutgers University. 


The opinions expressed are the authors’ own. They do not reflect any position or policy of any U.S. governmental entity, including the National Institutes of Health or the Department of Health and Human Services. 
On June 9-10, I joined a gathering of philosophers, psychologists, veterinarians, and biomedical researchers for the Animal Research Neuroethics Workshop at the Penn Center for Neuroscience and Society. The workshop, organized by neuroethicists Adam Shriver, James Serpell, and Martha Farah, focused on the ethical issues raised by new advances in neuroscience research with non-human animals. Here, researchers from many disciplines came together to share notes from the field and discuss new neuroethics problems. 
Over two days, we discussed problems like, What is the moral status of so-called “brains in dishes”? Is it morally permissible for scientists to cognitively enhance mice, rats, and chimps, giving them advanced cognitive capacities? Is it even conceptually possible to have a mouse model of human depression given the substantial psychological differences between humans and mice? What, more broadly, should we say about the scientific validity and moral permissibility of current neurological research on non-human animals? 

Despite our vast disciplinary diversity and some disagreement about issues in moral theory, participants were very quickly able to bridge disciplinary divides and create broad areas of consensus.

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

Special “Editor’s Choice” Issue of the Journal of Medical Ethics Now Online

by Brian D. Earp / (@briandavidearp)

On behalf of the Journal of Medical Ethics, I am excited to announce the publication of a special “Editor’s Choice” issue, now online at the journal website. In a rare turn for the journal, the entire issue made up of “Editor’s Choice” papers, with invited (peer-reviewed) papers from both up-and-coming and established scholars.

Editor-in-Chief Professor Julian Savulescu explains the significance of the issue: “Our self-imposed brief was to concentrate on excellent but less well-known scholars from a variety of perspectives, especially those who are young and up and coming, alongside some more established contributors.”

Although no particular topic assignment was given, Professor Savulescu remarks that “it is interesting that [the] contributions aggregate naturally around four perennial clusters: the concept of the good life, end of life, public health and new technologies (enhancement/selection).”

Here are some highlights from each contribution to the issue:

In “Prenatal screening and prenatal diagnosis: contemporary practices in light of the past,” Ana S. Iltis discusses genetic selection in the context of modern eugenics. As Savulescu notes: “She gives five reasons to believe this is not significantly different from old style, discredited eugenics of the late nineteenth and early twentieth century. Indeed, she argues convincingly that social goals, ‘public health’ and cost-effectiveness remain important drivers of genetic screening and testing programmes.”

Then, in “The ethics of sexual reorientation: what should clinicians and researchers do?” Sean Aas and Candice Delmas take on an argument that Savulescu, along with Dr. Anders Sandberg of the University of Oxford as well as myself (Brian Earp), have advanced with respect to the ethics of sexual orientation “conversion” therapy.

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.