Tag: parents

Bioethics Blogs

Interview with Arthur Caplan

by Kaitlynd Hiller and Rachel F. Bloom

It is a difficult task to succinctly describe the professional accomplishments of Arthur Caplan, PhD. For the uninitiated, Dr. Caplan is perhaps the most prominent voice in the conversation between bioethicists and the general public, as well as being a prolific writer and academic. He is currently the Drs. William F. and Virginia Connolly Mitty Professor of Bioethics at NYU Langone Medical Center and NYU School of Medicine, having founded the Division of Bioethics there in 2012. Additionally, he co-founded the NYU Sports and Society Program, where he currently serves as Dean, and heads the ethics program for NYU’s Global Institute for Public Health. Prior to joining NYU, he created the Center for Bioethics and Department of Medical Ethics at the University of Pennsylvania Perelman School of Medicine, serving as the Sidney D. Caplan Professor of Bioethics. Dr. Caplan is a Hastings Center fellow, also holding fellowships at The New York Academy of Medicine, the College of Physicians of Philadelphia, the American Association for the Advancement of Science, and the American College of Legal Medicine. He received the lifetime achievement award of the American Society of Bioethics and Humanities in 2016.

Dr. Caplan’s experience is not at all limited to the academic realm: he has served on numerous advisory counsels at the national and international level, and is an ethics advisor for organizations tackling issues from synthetic biology to world health to compassionate care. Dr. Caplan has been awarded the McGovern Medal of the American Medical Writers Association, the Franklin Award from the City of Philadelphia, the Patricia Price Browne Prize in Biomedical Ethics, the Public Service Award from the National Science Foundation, and the Rare Impact Award from the National Organization for Rare Disorders; he also holds seven honorary degrees.

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

How you’ll grow up, and how you’ll grow old

By Nathan Ahlgrim
Nathan Ahlgrim is a third year Ph.D. candidate in the Neuroscience Program at Emory. In his research, he studies how different brain regions interact to make certain memories stronger than others. In his own life, he strengthens his own brain power by hiking through the north Georgia mountains and reading highly technical science…fiction.

An ounce of prevention can only be worth a pound of cure if you know what to prevent in the first place. The solution to modifying disease onset can be fairly straightforward if the prevention techniques are rooted in lifestyle, such as maintaining a healthy diet and weight to prevent hypertension and type-II diabetes. However, disorders of the brain are more complicated – both to treat and to predict. The emerging science of preclinical detection of brain disorders was on display at Emory University during the April 28th symposium entitled, “The Use of Preclinical Biomarkers for Brain Diseases: A Neuroethical Dilemma.” Perspectives from ethicists, researchers conducting preclinical research, and participants or family members of those involved in clinical research were brought together over the course of the symposium. The diversity of panelists provided a holistic view of where preclinical research stands, and what must be considered as the field progresses.
Throughout the day, panelists discussed different ethical challenges of preclinical detection in the lens of three diseases: preclinical research and communicating risk in the context of Autism Spectrum Disorder (ASD), interventions and treatment of preclinical patients in the context of schizophrenia, and the delivery of a preclinical diagnosis and stigma in the context of Alzheimer’s disease.

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

Agreement and Disagreement About Experimental Treatment: The Charlie Gard Appeal

Tomorrow, the UK Court of Appeal will review the controversial case of a British infant, Charlie Gard. Charlie’s parents are appealing a recent High Court decision that gave doctors permission to withdraw his life support. They have raised money for Charlie to travel to the US for an experimental medical treatment

Source: Bioethics Bulletin by the Berman Institute of Bioethics.

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

Agreement and disagreement about experimental treatment. The Charlie Gard Appeal

by Dominic Wilkinson and Julian Savulescu

@Neonatalethics

@juliansavulescu

Tomorrow, the UK Court of Appeal will review the controversial case of a British infant, Charlie Gard. Charlie’s parents are appealing a recent High Court decision that gave doctors permission to withdraw his life support. They have raised money for Charlie to travel to the US for an experimental medical treatment.

 

Best Interests

The legal decision for Charlie will be based upon an assessment of his best interests. He has a rare genetic disorder affecting his muscles and his brain. He has been on life support since last October and has been progressively deteriorating. A neurologist in the USA has suggested that experimental nucleoside treatment might, in theory, offer some benefit, though it has never previously been tried in this situation.

The central ethical question is whether it would be best to provide the experimental treatment and continue intensive care for Charlie for several months more, or to withdraw treatment and allow him to die. How should we weigh up the risks and benefits of those two alternatives?

We have previously written about this difficult question. In a pair of editorials in the Lancet medical journal, we expressed different points of view. Dominic Wilkinson argued that the proposed course of treatment would do more harm than good. In his view, it is likely that Charlie would experience pain and discomfort from continued treatment; it is also unlikely, given what is known about it, that Charlie would benefit from nucleoside treatment. In contrast, Julian Savulescu argued that it is not clear that continued mechanical ventilation in intensive care is so terrible a life that it would not be worth living.

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 Ethics of In Vitro Gametogenesis

Françoise Baylis comments on the ethics of using gametes derived from human induced pluripotent stem cells for future human reproduction.

__________________________________________

A recent New York Times article, provocatively titled “Babies from Skin Cells? Prospect is Unsettling to Some Experts,” has once again drawn attention to controversial research by scientists at Kyushu University in Japan who succeeded in making fertile mouse pups using eggs created through in vitro gametogenesis (IVG). This is a reproductive technology that involves creating functional gametes (sperm and eggs) from induced pluripotent stem cells. Induced pluripotent stem cells are cells derived from adult body cells (such as skin cells) that have the ability to become other body cells including reproductive cells (sperm and eggs).

Supporters of this reproductive technology eagerly anticipate similar research in humans. Indeed, enthusiasts are quick to trumpet the potential benefits of in vitro gametogenesis. These benefits fall into three general categories.

First, we are told that research to derive human gametes from induced pluripotent stem cells is important for basic science. It will advance our understanding of gamete formation, human development, and genetic disease. In turn, this increased understanding will create new options for regenerative medicine.

Second, we are told that this research will allow clinicians to improve fertility services. For example, with in vitro fertilization (IVF), women typically have to undergo hormonal stimulation and egg retrieval. This can be onerous in terms of the time required for interviews, counseling, and medical procedures. It can also be harmful. Potential psychological harms include significant stress and its sequelae.

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

Nudges in the ICU: When and How Should Intensivists Guide Surrogates’ Decisions?

Coming up next week at the ATS International Conference in Washington, DC: “Nudges in the ICU: When and How Should Intensivists Guide Surrogates’ Decisions?”


This 2-hour session will address the use of behavioral economics and “nudges” in the ICU to guide surrogate decision-making. In particular, it will explore methods for effectively deploying nudges—tools for clinicians to use in the ICU—and an ethical framework within which to do so that adequately balances autonomy and paternal beneficence.


At the conclusion of this session, the participant will be able to:

  • Discuss principles of behavioral economics (a.k.a. decision psychology) that physicians might employ to ethically and effectively guide end-of-life decision making in the ICU
  • Clarify misconceptions about the meaning and importance of patient autonomy and informed assent among ICU patients lacking decisional capacity
  • Discuss special considerations when deploying behavioral economics with pediatric patients and their parent surrogates

Behavioral Economics, Choice Architecture, and Nudges in the ICU
G.L. Anesi, MD, MBE, Philadelphia, PA


Intensivists’ Use of Informed Assent When Patients Lack Capacity
J.R. Curtis, MD, MPH, Seattle, WA


Default to DNR?
R.D. Stapleton, MD, PhD, Burlington, VT


Integrated ICU Team Communications and the Nursing Perspective
D.K. Costa, PhD, RN, Ann Arbor, MI


The (Ambiguous) Role of Autonomy in Surrogate
Decision-Making
D.B. White, MD, Pittsburgh, PA


Helping Parents with Decisions
M.F. Haward, MD, Bronx, NY

Source: bioethics.net, a blog maintained by the editorial staff of The American Journal of Bioethics.

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

Nudges in the ICU: When and How Should Intensivists Guide Surrogates’ Decisions?

Coming up next week at the ATS International Conference in Washington, DC: “Nudges in the ICU: When and How Should Intensivists Guide Surrogates’ Decisions?”


This 2-hour session will address the use of behavioral economics and “nudges” in the ICU to guide surrogate decision-making. In particular, it will explore methods for effectively deploying nudges—tools for clinicians to use in the ICU—and an ethical framework within which to do so that adequately balances autonomy and paternal beneficence.


At the conclusion of this session, the participant will be able to:

  • Discuss principles of behavioral economics (a.k.a. decision psychology) that physicians might employ to ethically and effectively guide end-of-life decision making in the ICU
  • Clarify misconceptions about the meaning and importance of patient autonomy and informed assent among ICU patients lacking decisional capacity
  • Discuss special considerations when deploying behavioral economics with pediatric patients and their parent surrogates

Behavioral Economics, Choice Architecture, and Nudges in the ICU
G.L. Anesi, MD, MBE, Philadelphia, PA


Intensivists’ Use of Informed Assent When Patients Lack Capacity
J.R. Curtis, MD, MPH, Seattle, WA


Default to DNR?
R.D. Stapleton, MD, PhD, Burlington, VT


Integrated ICU Team Communications and the Nursing Perspective
D.K. Costa, PhD, RN, Ann Arbor, MI


The (Ambiguous) Role of Autonomy in Surrogate
Decision-Making
D.B. White, MD, Pittsburgh, PA


Helping Parents with Decisions
M.F. Haward, MD, Bronx, NY

Source: bioethics.net, a blog maintained by the editorial staff of The American Journal of Bioethics.

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

How Different are Female, Male and Intersex Genital Cutting?

By Brian D. Earp  (@briandavidearp), with Rebecca Steinfeld, Goldsmiths, University of London 

Three members of the Dawoodi Bohra sect of Islam were recently indicted on charges of “female genital mutilation” (FGM) in the US state of Michigan. In Norway, meanwhile, one of the major political parties has backed a measure to ban childhood male circumcision.

Fearing that objections to female forms of genital cutting will be applied to male forms, some commentators have rushed to draw a “clear distinction” between them. Others, however, have highlighted the similarities.

In fact, childhood genital cutting is usually divided not just into two, but three separate categories: “FGM” for females; “circumcision” for males; and “genital normalisation” surgery for intersex children – those born with ambiguous genitals or mixed sex characteristics.

In Western countries, popular attitudes towards these procedures differ sharply depending on the child’s sex. In females, any medically unnecessary genital cutting, no matter how minor or sterilised, is seen as an intolerable violation of her bodily integrity and human rights. Most Westerners believe that such cutting must be legally prohibited.

In intersex children, while it is still common for doctors to surgically modify their genitals without a strict medical justification, there is growing opposition to non-essential “cosmetic” surgeries, designed to mould ambiguous genitalia into a “binary” male or female appearance.

Belgian model Hanne Gaby Odiele, for example, has spoken openly about the negative impact of the “irreversible, unconsented and unnecessary” intersex surgeries she was subjected to growing up.

In male children, by contrast, the dominant view is that boys are not significantly harmed by being circumcised, despite the loss of sensitive tissue.

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

A review of Table 19: Reinforcing the dominant cultural narrative that all unintended pregnancies are wonderful and wanted

A friend and I recently watched the movie Table 19 because we were looking for a
fun comedy. Unfortunately, the movie was neither fun nor funny. Indeed, the
movie did not deliver on a number of fronts, which is why I do not recommend
it. I want to focus on a specific plot line that this movie employed—one that
is common in movies and books—and that I find problematic. In case you are
interested in watching this movie despite my warnings, there are spoilers
ahead.

The basic plot is that Eloise McGarry, played by Anna
Kendrick, ends up sitting at the table of “rejects” at a wedding. She was
originally the maid of honor to the bride, but she and the bride’s brother,
Teddy, broke up after two years of dating and she was consequently demoted from
the bridesmaids’ table to the “loser” table, Table 19. As the movie progresses,
we find out that the reason Eloise and Teddy broke up is because of an argument
surrounding an unintended pregnancy. Eloise was upset with Teddy when she told
him she was pregnant because he did not immediately respond positively.
Instead, he asked her what she wanted to do about the pregnancy. His lack of
enthusiasm enraged her and she told him that they would be ridiculous parents,
which angered him, causing him to break up with her via text message. Because
this is a typical Hollywood movie, it has a happy ending with Eloise and Teddy
getting back together and happily welcoming their baby into the world.

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

A review of Table 19: Reinforcing the dominant cultural narrative that all unintended pregnancies are wonderful and wanted

A friend and I recently watched the movie Table 19 because we were looking for a
fun comedy. Unfortunately, the movie was neither fun nor funny. Indeed, the
movie did not deliver on a number of fronts, which is why I do not recommend
it. I want to focus on a specific plot line that this movie employed—one that
is common in movies and books—and that I find problematic. In case you are
interested in watching this movie despite my warnings, there are spoilers
ahead.

The basic plot is that Eloise McGarry, played by Anna
Kendrick, ends up sitting at the table of “rejects” at a wedding. She was
originally the maid of honor to the bride, but she and the bride’s brother,
Teddy, broke up after two years of dating and she was consequently demoted from
the bridesmaids’ table to the “loser” table, Table 19. As the movie progresses,
we find out that the reason Eloise and Teddy broke up is because of an argument
surrounding an unintended pregnancy. Eloise was upset with Teddy when she told
him she was pregnant because he did not immediately respond positively.
Instead, he asked her what she wanted to do about the pregnancy. His lack of
enthusiasm enraged her and she told him that they would be ridiculous parents,
which angered him, causing him to break up with her via text message. Because
this is a typical Hollywood movie, it has a happy ending with Eloise and Teddy
getting back together and happily welcoming their baby into the world.

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.