Tag: autonomy

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. 

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

American Nurses Association Supports VSED

Too few medical associations have issued either practice guidelines or policies on VSED. Fortunately, the American Nurses Association issued a favorable position statement this summer. 


The ANA concludes: “VSED at the end of life is used to hasten death, and is a reflection of autonomy and the patient’s desire for control.”

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

What can neuroethicists learn from public attitudes about moral bioenhancement?

By Peter Reiner

Dr. Reiner is Professor and co-founder of the National Core for Neuroethics at the University of British Columbia where he is a member of the Department of Psychiatry and the Centre for Brain Health. Dr. Reiner began his research career studying the cellular and molecular physiology of the brain, with particular interests in the neurobiology of behavioural states and the molecular underpinnings of neurodegenerative disease. In 1998, Dr. Reiner became President and CEO of Active Pass Pharmaceuticals, a drug discovery company that he founded to tackle the scourge of Alzheimer’s disease. Upon returning to academic life in 2004, Dr. Reiner refocused his scholarly work in the area of neuroethics, co-founding the National Core for Neuroethics with Dr. Judy Illes in 2007. Dr. Reiner has championed quantitative analysis of public attitudes towards diverse issues in neuroethics including the propriety of cognitive and moral enhancement, the contours of autonomy in the real world, and the neuroethical implications of Technologies of the Extended Mind.

Moral behavior is fundamental to human society. Wherever one goes on the planet, one finds a set of norms that guide behavior, and following these norms is a basic tenet of peaceful coexistence with one’s fellow humans. Despite abundant evidence that the arc of human history trends towards decreased violence (Pinker, 2011), a proxy for moral behavior, scholars have suggested that society might be better off were we to enhance our moral capacities, and that using biological methods to do so is warranted (Douglas, 2008; Persson and Savulescu, 2008). This has engendered a vigorous debate that goes beyond the usual divide between bioconservatives and technoprogressives (Reiner, 2013a); in this arena, even ardent proponents of enhancement technologies have registered dissent (Harris, 2010).

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

Are you a person or an animal?

The question in the title may sound like an insult. That is, not as a question, but as something one might say in anger to reprimand someone who misbehaves.

In philosophy, the question is asked seriously, without intention of insulting. A philosopher who misbehaves at a party and is reprimanded by another guest – “Are you a person or an animal?” – could answer, shamelessly: Eh, I really don’t know, philosophers have contemplated that question for hundreds of years.

What then is the philosophical question? It is usually described as the problem of personal identity. What are we, essentially? What constitutes “me”? What holds the self together? When does it arise and when does it disappear?

According to proponents of a psychological view, we (human beings) are persons with certain psychological capacities, such as self-awareness. That psychology holds the self together. If an unusual disease made my body deteriorate, but doctors managed to transplant my mental contents (self-awareness, memories, etc.) into another body, then I would survive in the other body. According to proponents of the rival, animalist view, however, we are animals with a certain biology. An animalist would probably deny that I could survive in a foreign body.

The difference between the two views can be illustrated by their consequences for a bioethical question: Is it permissible to harvest organs from brain-dead bodies to use as transplants? If we are essentially persons with self-awareness, then we cease to exist when the brain dies. Then it should be permissible to harvest organs; it would not violate personal autonomy.

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

Taking Patient Autonomy out of the DNR

The law is part of an attempt to by the right-to-life movement in Texas to roll back the advance directives act, especially the futility provision.

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

Taking Patient Autonomy Out of the DNR

by Craig Klugman, Ph.D.

The Texas government has passed SB 11 an act “relating to general procedures and requirements for certain do-not-resuscitate orders; creating a criminal offense.” As of April 1, 2018, one can be jailed for offenses involving DNR orders.  When new laws are passed they often require new regulations to interpret them as well as statements from the state attorney general on how they are to be enforced and viewed. While those steps have not yet been taken, the threat to physician practice and patient autonomy in this law necessitates taking a further look at it now.…

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

Françoise Baylis and Carolyn McLeod (eds), Family-Making: Contemporary Ethical Challenges, Oxford University Press, 2014

This fascinating anthology focuses on the question of how we make families, and how bionormative assumptions shape or distort our collective thinking about parenting, children’s welfare, and state obligations to parents and children. The editors are primarily interested in the question of whether parents’ moral responsibilities toward children differ for children produced through assistive reproductive technologies (ART) compared to children brought into the family via adoption. As the editors point out, in the realm of ART, most of the philosophical literature has been focused on parental autonomy and rights to assistance in reproducing, while the adoption literature is almost entirely focused on the protection of children. The anthology does an excellent job of exploring this disconnect, and probing assumptions about moral responsibilities within family-making. Taken as a whole, the chapters explore “whether people should rely on others’ reproductive labour in having children, whether they should ensure that they will have a genetic tie to their children or that their children will have some connection to genetic relatives, whether they should bring a new child into the world at all, whether they should agree to what the government would require of them for an adoption, where they should live if the family they make is multi-racial, at what age they should forgo having children, and the list goes on” (6).

The first section of the book sets the stage with two excellent chapters on the goods of parenting (Harry Brighouse and Adam Swift) and the goods of childhood (Samantha Brennan). The goods of parenting are distinguished from other related goodsintimacy with another adult or friend, friendship with a child, being an uncle, having a pet, etc.

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 Feminist Neuroethics of Mental Health

By Ann E. Fink
Ann Fink is currently the Wittig Fellow in Feminist Biology at the University of Wisconsin–Madison, with an appointment in Gender and Women’s Studies and concurrent affiliations with Psychology and the Center for Healthy Minds. Her research in cellular and behavioral neuroscience has appeared in the Journal of Neuroscience, Journal of Neurophysiology, PNAS and other journals. Ann’s interdisciplinary work addresses the ethics of neuroscience in relation to gender, mental health and social justice. 

Emotionality and gender are tied together in the popular imagination in ways that permeate mental health research. At first glance, gender, emotion, and mental health seem like a simple equation: when populations are divided in two, women show roughly double the incidence of depression, anxiety, and stress-related disorders1-3. Innate biological explanations are easy to produce in the form of genes or hormones. It could be tempting to conclude that being born with XX chromosomes is simply the first step into a life of troubled mood. Yet, buried in the most simplistic formulations of mental illness as chemical imbalance or mis-wiring is the knowledge that human well-being is a shifting, psychosocial phenomenon. Learning and memory research offers a treasure trove of knowledge about how the physical and social environment changes the brain. Feminist scholarship adds to this understanding through critical inquiry into gender as a mode of interaction with the world. This essay explores how a feminist neuroethics framework enriches biological research into mental health. 
Problems with “Biology-from-birth” stories 
What if understanding gender and health isn’t a tale of two gonads (or genitalia, or chromosomes)?

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.