Tag: terminology

Bioethics Blogs

Happy Labor Day

As we enjoy the unofficial end of summer on this Labor Day, it’s good to remember those who do their difficult jobs well with little fanfare and in some cases, with some risk involved. One recent example is the case of Alex Wubbles, a Utah nurse who was arrested in July for simply following the basics of patient care when she stopped a police officer from taking blood from an unconscious patient without any warrant or consent.

If you have seen the troubling body-cam video of the incident, you can see the nurse calmly explain to the officer why she could not allow him to draw blood from the patient. During the confrontation, she spoke to her supervisor on the phone, who was able to confirm the correctness of her actions. Even this did not stop the officer from dramatically taking her into custody.

Clearly, this was an extraordinary occasion. However, we mustn’t miss an important point: Alex Wubbles put her patient’s rights first. By demonstrating patient-centered care, she valued the patient as a human being. This is medical care (and, by extension, bioethics) at its best. Even in the best of times, being a patient in the hospital can be a wearying and disorienting experience—all of the professionals coming in and out of the room, the strange sounding terminology, accompanied by the uneasy feeling that no one is listening to you. In the midst of it all, it is important to remember that the rights of the most vulnerable are as important as those of the most powerful.

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

The FDA Approves a Landmark Cancer Drug

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The Food and Drug Administration on Wednesday approved a new therapy to treat leukemia in kids and young adults—a decision whose importance is as much symbolic as it is practical.

Kymriah, from the Swiss pharmaceutical company Novartis, is a cancer therapy that represents several things at once: a game-changing way to treat cancer through genetic engineering, a novel paradigm for the biotech business, and the latest turn in the debate over just how astronomically expensive a life-saving therapy can be.

Kymriah is strikingly effective for young patients with acute lymphoblastic leukemia, or ALL, but it is far more involved than taking a pill or getting an infusion. It requires inserting a human-designed gene into a patient’s own T cells so they recognize and ferociously attack cancer cells. Researchers began modifying T cells for patients in the 1990s—and now the technology called CAR T-cell therapy is finally ready for prime time in treating cancer.

Of several dozen ALL patients in a clinical trial for Kymriah, 83 percent were cancer-free after three months. It is a lifeline for patients in which traditional treatments like chemotherapy and bone-marrow transplants had failed. When the FDA’s advisory committee initially voted in favor of approving Kymriah, one member called it “the most exciting thing I’ve seen in my lifetime” for childhood leukemia. Novartis is hardly the only company interested in CAR T. Kymriah is the first approved therapy, but several clinical trials—mostly notably Kite Pharma’s for lymphoma—are right behind it.

(To clear up any possible confusion about terminology: The FDA and others have chosen to call CAR T-cell therapy a form of gene therapy—and thus deemed it the first gene therapy to be approved in the United States.

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

Jewish Guide to Practical Medical Decision Making

Check out
this new 368-page
book
 from Rabbi Jason Weiner: Jewish Guide to Practical
Medical Decision Making.


Due to rapid advances in the medical field, existing books on Jewish medical
ethics are quickly becoming outdated. 
Jewish
Guide to Practical Medical Decision Making
 seeks to remedy that by
presenting the most contemporary medical information and rabbinic rulings in an
accessible, user-friendly manner. 


Rabbi Weiner addresses a broad range of medical circumstances such as surrogacy
and egg donation, assisted suicide, and end-of-life decision making. Based on
his extensive training and practical familiarity inside a major hospital, Rabbi
Weiner provides clear and concise guidance to facilitate complex
decision-making for the most common medical dilemmas that arise in contemporary
society.


1. Facilitating Shared Decision-Making 

A. Understanding Terminology: Key Concepts to Facilitate
Collaborative Decision-Making

B. Truth-Telling: When Painful Medical Information Should
and Should Not Be Revealed 

C. Mental Illness: Determining Capacity and Proper Treatment
in Accordance with Jewish Law  


2. How Much Treatment? 

A. Risk and Self-Endangerment: Determining the
Appropriateness of Attempting Various Levels of Dangerous Medical Procedures

B. Making Decisions on Behalf of an Incapacitated Patient

C. Pediatrics: Jewish Law and Determining a Child’s Consent
and Treatment 

D. Palliative Care and Hospice in Jewish Law and Thought


3. Prayer  

A. Is Prayer Ever Futile? On the Efficacy of Prayer for
the Terminally Ill 

B. Viduy: Confessional Prayers Prior to Death


4.  At the End of Life

A. Advance Directives and POLST Forms  

B. End-of-Life Decision-Making: DNR, Comfort Measures,
Nutrition/Hydration, and Defining “Terminal” in accordance with Jewish Law

C. Withholding vs. Withdrawing: Deactivating a
Ventilator and Cessation of Dialysis and Cardiac Defibrillators at the End of
Life

D. Case

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

Orkideh Behrouzan’s Prozak Diaries: Psychiatry and Generational Memory in Iran by Dina Omar

Prozak Diaries: Psychiatry and Generational Memory in Iran

Orkideh Behrouzan

Stanford University Press, 2016, 328 pages

 

Orkideh Behrouzan’s first ethnographic endeavor, Prozak Diaries (2016), explores a question that has provoked much interest in the Middle East in recent years: what’s with all the talk about depression nowadays? The influence of Western clinical psychiatry seems to traverse language: the Farsi word afsordegi, for example, is often substituted by ‘depreshen.’ Prozak Dairies is a multifaceted exploration of the pervasiveness of depreshen talk, or the use of psychiatric language more generally, in Iranian society. The main thrust of Prozak Diaries considers the extent to which modern clinical psychiatric language has become vernacular—gradually normalized within Iranian popular culture and public discourse and co-constitutive with trends in psychiatric treatments and scholarly debates. Behrouzan identifies depreshen, as well as other psychopathologies such as attention deficit hyperactivity disorder (ADHD) and post traumatic stress disorder (PTSD), as diagnoses that have grown in popularity over the past three decades. She then follows the many elusive manifestations of psychiatric discourses and therapeutic practices amongst Iranians. Behrouzan asks questions that are not only relevant to Iranians but which also reflect global trends pertaining to increased rates of prescribing and consuming psycho-pharmaceuticals, an adoption of American clinical language, and an acceptance of an agenda standardized by American pharmaceutical companies. How, she asks, has the normalization of the psychiatric vernacular engendered new ways “of knowing, interpreting, and perceiving oneself in the world?” How might the contemporary psychiatric vernacular open up new ways of expressing mental or emotional conditions in Iran?

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

The Role of Plant-Based, Meatless Meats In Sustainable Diets

July 27, 2017

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The two American companies are not the first to create innovative alternative proteins (known as APs, such as tofu), meat analogues, or imitation meat (e.g. veggie burgers, tofurkey). Other start-ups such as Memphis Meats and Mosa Meats are creating animal-based cell-cultured meats. But Beyond Meat and Impossible Foods are the first start-ups to market their non-meat products to meat eaters (or “lovers,”), not vegetarians or vegans. The companies excel at targeted marketing: meatless meats bring to mind foods with all the sensory and nutritional benefits of meat without any of its environmental or health harms – but meatless meats are simply rebranded, repackaged, and reimagined meat analogues. After all, their products contain plants, just like veggie burgers. The difference in terminology between meatless meats and meat analogues or imitation meat is primarily in intended audience – not in substance.

Beets are the secret to Beyond Burger’s bleeding patty, while the “magic” ingredient that simulates sizzling fat in the Impossible Burger is genetically-modified plant-based heme, an iron-compound found in most animal muscles. The long-term health and nutrition impacts of meatless meat are not yet fully known. However, both the Beyond and Impossible Burger burgers contain 20 grams of plant protein per serving, relatively equivalent to one beef patty. Compared to normal burgers, these patties have significantly more calories (40-50 kcal per serving more) and sodium (about six times as much). The difference between beef and vegetable fats is also striking – the Impossible Burger has 15 grams of saturated fat (triple that of a beef burger) – and may contribute to any taste differential noticed by a serious meat eater(link is external).

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

Authorship and Pets

The International Committee of Medical Journal Editors is an
influential group that, as expected, takes publication and authorship very
seriously.  They have issued the most
generally accepted definition of the criteria for authorship of scientific
publications. They list these criteria very clearly and unambiguously on their website.
These criteria are:

“The ICMJE
recommends that authorship be based on the following 4 criteria:

  •            Substantial
    contributions to the conception or design of the work; or the acquisition,
    analysis, or interpretation of data for the work; AND

  •          Drafting the
    work or revising it critically for important intellectual content; AND
  •           Final
    approval of the version to be published; AND
  •          Agreement to
    be accountable for all aspects of the work in ensuring that questions related
    to the accuracy or integrity of any part of the work are appropriately
    investigated and resolved. “
  • They go on to say “All those designated as authors
    should meet all four criteria for authorship, and all who meet the four
    criteria should be identified as authors.” There does not seem to leave much
    doubt as to their meaning. The practise of guest authorship, including authors
    with non-substantive contributions by virtue of their position was once common
    but is now considered inappropriate. However, no simple set of guidelines can
    address all possible circumstances. Which raises the point I am addressing in
    this blog: What about pets?

    An important paper
    on atomic behaviour published in Physical Reviews by Jack Hetherington and
    F.D.C.

    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

    Authorship and Pets

    The International Committee of Medical Journal Editors is an
    influential group that, as expected, takes publication and authorship very
    seriously.  They have issued the most
    generally accepted definition of the criteria for authorship of scientific
    publications. They list these criteria very clearly and unambiguously on their website.
    These criteria are:

    “The ICMJE
    recommends that authorship be based on the following 4 criteria:

      Substantial
    contributions to the conception or design of the work; or the acquisition,
    analysis, or interpretation of data for the work; AND

      Drafting the
    work or revising it critically for important intellectual content; AN

      Final
    approval of the version to be published; AND

      Agreement to
    be accountable for all aspects of the work in ensuring that questions related
    to the accuracy or integrity of any part of the work are appropriately investigated and resolved. “

    They go on to say “All those designated as authors
    should meet all four criteria for authorship, and all who meet the four
    criteria should be identified as authors.” There does not seem to leave much
    doubt as to their meaning. The practise of guest authorship, including authors
    with non-substantive contributions by virtue of their position was once common
    but is now considered inappropriate. However, no simple set of guidelines can
    address all possible circumstances. Which raises the point I am addressing in
    this blog: What about pets?

    An important paper
    on atomic behaviour published in Physical Reviews by Jack Hetherington and
    F.D.C. Willard is the object of this question.

    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

    Some Comments about Being a Philosopher of Color and the Reasons I Didn’t Write a (Real) Paper for this (Seemingly) Ideal Venue for my Work

    by Sean A. Valles

    ABSTRACT. This special issue conspicuously lacks work by Philosophers of Color (with the exception of this commentary). I have been given this opportunity to discuss the impediments that kept me from submitting my relevant work, offered as a small step toward recognizing the impediments faced by other Philosophers of Color. I highlight factors including direct and indirect consequences of a disproportionately White community of US philosophers, and some underrecognized risk-reward calculations that Philosophers of Color face when choosing an article project. I urge further discussion of the topic, starting with an exhortation to choose the right phenomenon and accordingly frame the right question: Why are White philosophers deliberating the “ethical and social issues arising out of the 2016 US presidential election” in a prestigious journal, while Philosophers of Color are deliberating the same issues in tense classrooms, closed offices, and on-/off-campus forums?

    This is not a real article. But in this special issue on the 2016 US election and Trump it is, to my knowledge, the only contribution written by a Philosopher of Color. It is a commentary about the fact that it is the only contribution written by a Philosopher of Color.

    After Editor-in-Chief Rebecca Kukla expressed consternation that the issue was full of excellent papers, but written by a roster of White philosophers, I offered to say something about why I didn’t submit any of my relevant philosophical work (on nativism, racism, health policy, Latinx health, etc.), and why it didn’t surprise me that almost none of the other well-qualified Philosophers of Color did either.

    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

    Reflections on the Federal Budget & LGBT Families

    Sophia Fantus argues that the expansion of a tax credit to LGBT individuals who use assisted reproduction helps to legitimize and include the perspectives, needs, and experiences of LGBT families.

    __________________________________________

    Assisted reproduction is associated with high out-of-pocket expenditures as services often cost tens of thousands of dollars. For the past ten years in Canada, heterosexual couples diagnosed with medical infertility have been able to claim the cost of assisted reproduction as part of their medical expense tax credit. Recently, the Canadian Government approved a new federal budget that allows LGBT (lesbian, gay, bisexual and transgender) and single persons to also receive a tax credit for assisted reproduction. That tax credit is retroactive for up to ten years.

    The World Health Organization defines infertility as a disease in which there is a failure to achieve a pregnancy after at least 12 months of regular unprotected sexual intercourse. Accordingly, assisted reproduction has been conceptualized as a biomedical intervention to resolve a diagnosed medical condition. The new retroactive tax credit signifies the adoption of broader definitions of infertility that include LGBT experiences.

    The Rainbow by Robert Delaunay, 1913

    The use of assisted reproduction by LGBT families separates heterosexuality and heterosexual sex from procreation, and yields novel routes to parenthood for LGBT individuals. In contrast to the typical heterosexual experience, the use of assisted reproduction by LGBT individuals is often the primary (and desired) choice for pursuing parenthood. By including the experiences of LGBT families in the federal budget, the Government is indirectly supporting a broader understanding of infertility from a medical model to a social and structural model that recognizes  single women and men, as well as LGBT couples, who require a third-party to procreate.

    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

    Brain death: experts divided on how death is defined

    Pdf logoSome authors, as Bernat reports in his article, have come to classify brain death unscientifically, illogically, even treating it as a legal fiction

    In the November 2014 issue of the American Journal of Bioethics, see HERE (1), Professor James L. Bernat reflects on where the concept of brain death is headed. The reason for this is the fact that there is still reticence as regards this concept in the public and academic spheres. Professor Bernat refers to two recent cases in which the diagnosis of brain death led to clinical-ethical-care problems that emerged in the media and public opinion.   One of these is the case of Jahi McMath, a child who suffered severe anoxic encephalopathy, as a result of which she developed symptoms consistent with a diagnosis of brain death. Jahi’s parents refused to accept the diagnosis of death and requested that the patient’s treatment is maintained, as they did not consider her dead. The second case is that of Marlise Muñoz, a pregnant patient, also declared brain dead and whose physicians decided to maintain life support measures (connection to a respirator, and maintenance of other treatments), based on the fact that the survival of the foetus was at stake. Marlise’s family asked that these support measures be withdrawn since Marlise was considered clinically and legally dead.

    Persistence of controversy in brain death criterion

    The persistence of controversies in relation to the concept of brain death is striking, although it is over 40 years since the birth of this concept of death of the person, published in the Journal of the American Medical Association (JAMA) in 1968 (2).

    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.