Tag: exhibits

Bioethics Blogs

Ethics Committees Should Have Standards in Preparing New Members

Guest Post: Danish Zaidi and Jennifer Kesselheim
Paper: Assessment of orientation practices for ethics consultation at Harvard Medical School-affiliated hospitals

Ethics advisory committees (EACs), or clinical ethics committees, fulfill an important role in hospitals, providing ethics consultation, contributing to hospital-wide policies, and educating staff on ethical dimensions of medical practice. Our study built upon a central question: what qualifies one to serve on these sorts of committees? It’s a question with added relevance to us as authors: Danish Zaidi was part of the inaugural class of the Harvard Medical School Master of Bioethics program and Jennifer Kesselheim is an EAC co-chair and the founding director of the Harvard Medical School Master of Medical Sciences (MMSc) in Medical Education program. We studied how EACs recruit and educate members of their committees. In particular, what orientation practices were use in educating new members of EACs and how did members perceive confidence were member in fulfilling their duties on the other end of their “orientation”?

In recent years, the American Society for Bioethics & Humanities (ASBH) has made efforts to improve and standardize practices in ethics consultation across medical institutions. The ASBH has published two foundational books regarding ethics consultation and recently their Board of Directors approved the development of a healthcare ethics consultation (HCEC) certification program. Such efforts allude to a desire for standards in ethics consultation. As such, we turned to the ASBH Core Competencies in Healthcare Ethics Consultation to identify areas that we felt committee members should have familiarity with, using these competencies as metrics to develop our survey instrument.

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

Where to publish and not to publish in bioethics – the 2017 list

Allegedly, there are over 8.000 so called predatory journals out there. Instead of supporting readers and science, these journals serve their own economic interests first and at best offer dubious merits for scholars. We believe that scholars working in any academic discipline have a professional interest and a responsibility to keep track of these journals. It is our job to warn the young or inexperienced of journals where a publication or editorship could be detrimental to their career and science is not served. We have seen “predatory” publishing take off in a big way and noticed how colleagues start to turn up in the pages of some of these journals. While many have assumed that this phenomenon mainly is a problem for low status universities, there are strong indications that predatory publishing is a part of a major trend towards the industrialization of misconduct and that it affects many top-flight research institutions (see Priyanka Pulla: “In India, elite institutes in shady journals”, Science 354(6319): 1511-1512). This trend, referred to by some as the dark side of publishing, needs to be reversed.

Gert Helgesson, Professor of Medical Ethics, Karolinska InstitutetThus we published this blog post in 2016. This is our first annual update (the previous version can be found here). At first, we relied heavily on the work of Jeffrey Beall, a librarian at the University of Colorado, who runs blacklists of “potential, possible, or probable” predatory publishers and journals. His lists have since been removed although they live on in new form (anonymous) at the Stop predatory journals site (SPJ) and they can also be found archived.

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

Trusting yourself

Trusting yourself, what does it mean? It can of course mean thinking that you always know best, trusting your strength to prevail over whoever and whatever you may meet in life.

There is another form of trust in yourself, where you trust your uncertainty rather than your certainty. You respond to your uncertainty not by accusing yourself, but by taking a deep breath and saying: this is difficult. I would not be so uncertain if it was not for the fact that I have come across something that truly requires caution, reflection, and long-term investigation.

It sounds humble when Socrates says that the only thing he knows is that he knows nothing. Or when it is said that wisdom lies in the recognition that one is not wise. In a sense, it is humble. However, this form of humility also exhibits self-reliance. One is uncertain not because one is unusually stupid but because some things are unusually difficult. Life sometimes surpasses the intellect.

People who trust their uncertainty express it as honest questions, instead of hiding it behind clever arguments and theses. When they express their uncertainty as questions, their work can begin. The uncertainty is then their only certainty. It shows them there is something worthy of investigation. It shows them the way, through sincere questions and rejections of premature solutions.

Sometimes weakness a strength. Socrates relied on it. Researching persons do.

Pär Segerdahl

The Ethics Blog - Thinking about thinking

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

Mortal remains

One of the star exhibits in the Royal College of Surgeons’ Hunterian Museum of anatomy in London is the skeleton of Charles Byrne, an 18th Century Irishman who was about 8 feet tall. However, the museum is to close in May for renovations and there are calls to use the opportunity to remove or bury the remains. Does this make sense?

A celebrity in his day, Byrne died in 1783 of ill health and drink in London. He knew that John Hunter wanted to dissect him after his death, so he directed his friends to sink his body in a lead-lined casket in the English Channel. Alas, Hunter succeeded in stealing the body anyway and it eventually turned up in a display case.

Similar events darken the history of the Australian state of Tasmania. The last full-blood Aboriginal Tasmanian, William Lanne, died in 1869. Although the story is murky, it appears that before his funeral the Surgeon-General of the colony, William Crowther, stole his head for “scientific study” and someone else removed his hands and feet. There is no record of scientific studies. Crowther went on to become premier, and an impressive bronze statue of him was erected in the centre of the city.

The last full-blood Aboriginal woman in Tasmania, Truganini, was terrified that the same thing would happen to her and directed that her body be cremated. Her wishes were ignored and her skeleton ended up in a display in the Hobart Museum. It was finally cremated in 1976.

Nowadays body-snatching would not be tolerated (although the Hunterian Museum still refuses to remove Byrne’s body from display).

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

Is Neuromarketing Influencing Pathological Shopping Behavior?

By Elena Lopez
Elena Lopez is currently pursuing her BBA at Goizueta Business School and is also pursuing a degree in Neuroscience at Emory College of Arts & Sciences. She is involved in volunteer-related organizations that help those with limited resources and offer free consulting services, such as Volunteer Medical Interpretation Services and Emory Venture Strategic Partners. Elena developed a curiosity for neuroethics after attending the NBB Paris study abroad program and the 3rd international Neuroethics Network conference. She hopes to combine her passion for science and business in her future career goals.

Just over a month has passed since the biggest holiday shopping season of the year, and many Americans are already planning how they will financially recover from their overspending and failed budgeting plans. Financial sites like Forbes and the CNBC personal finance page have already come out with articles titled “Oops, you overspent on the holidays” and “Holiday spending hangover? Get your finances back on track” in an attempt to help consumers recover from financial losses. Months before the frenzy began, NBC reported that the National Retail Federation forecasted sales for November and December 2016 would increase 3.6% from last year to reach a whopping $800 billion dollars- with 90% of those sales consisting of online purchases (Weisbaum, 2016). With the growing presence of the digital component in sales and advertising, interactions between consumers and retailers can be tailored to the individual and offer greater shopping experiences. In the same NBC report, Deloitte stated that digital interactions likely influence two-thirds of every dollar spent (Weisbaum, 2016).

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

VSED Conference in North Carolina

After October’s very successful two-day conference on VSED in Seattle, I am gearing up for another one in North Carolina on April 6, 2017.  Join me and other legal and medical experts.  


7:00  Registration opens  – complimentary Continental Breakfast & Exhibits


9:00  Welcome and Introduction: keynote speaker – Thaddeus Pope, JD, PhD.
Voluntary Stopping Eating and Drinking (VSED) – it’s special place in our American culture, ethics, and law as regards End-of-Life Decision-Making.


10:00  Survey of end-of-life choices: North America versus Western Europe.


10:40 Breakout Presentations: in-depth exploration, discussion & Q&A


Morning Theme: For the Hospice-eligible patient seeking VSED nursing support: the ethical, legal, clinical issues for the patient & family caregiver


10:40-11:50   John Moskop, PhD  – Medical Bioethicist
Ethical issues– in simpler case – alternative strategies:  How might the patient and family approach the ethical issues about early onset of death with the choice of VSED?


10:40-11:50 Mark Corbett, MD – Hospice Physician
Clinical issues– in simpler case – is it generally expected with Hospice nurse support that a family caregiver can manage pain, discomforts, hygiene with VSED?


10:40-11:50   Kevin Diaz, JD  – Legal Advocate
Legal issues – various EOL legal and medical documents (ACD, HCPOA, MOST, competency exam) to perfectly or usually avoid legal controversy with VSED?


10:40-11:50   Office of the Medical Examiner
Law enforcement issues – VSED: competence, coercion, elder abuse?  How and when these issues come into focus for the Medical Examiner?


Noon  – complimentary Lunch served on the mezzanine 

1:00-4:00  Plenary session – 3 presenters – then moderated panel discussion & Q&A
Afternoon Theme:  For the UNCERTAIN case and the COMPLICATED case
Case 2:  with clinically uncertain “imminent-death” – what are the obstacles to a patient choosing to start VSED?

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

Nobody Ever Believes This Story: Slam Poetry as a Palimpsestic Space for Mental Illness Identity

By Chandler Batchelor

Chandler Batchelor is a graduate student in the Literature, Medicine, and Culture MA program at the University of North Carolina at Chapel Hill.  She is interested in alternative and holistic approaches to mental healthcare, doctor-patient relationships in mental healthcare, and mental health advocacy.

Typically, descriptions of mental illness provided by medical professionals are often taken more seriously than descriptions given by the diagnosed themselves. Biomedicine has a particular way of talking about mental abnormalities, describing mental experiences with symptoms. It uses words like “depression,” “flat affect,” and “grandiose sense of self” to depict concrete outward signs of internal dysfunction. In our culture, this biomedical rhetoric is upheld as the definitive, most correct and objective way of describing mental illness. But while biomedicine is an excellent tool for describing diseases, it often fails to capture the subjective nuances of the illness experience. By looking at how the diagnosed talk about their subjective experiences, we can gain new insights that could not be gleaned from a biomedical understanding alone (Estroff, 2003; Kleinman, 1988).

Neuro-rhetorician Cynthia Lewiecki-Wilson (2003) argues that the power to talk about one’s own experience can be reclaimed through the invocation of certain narrative genres that are more collaborative or performative. Specifically, I have found that one way that people with mental illness regain the credibility they need to craft their own identity as a mentally ill person is through the medium of slam poetry—spoken word poetry, usually emotionally intense, that is performed at competitions called “slams.” Additionally, I believe that the metaphor of “palimpsest” is of particular use here.

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

Jahi McMath – Latest Family Brief in Federal Case

In Jahi McMath’s family against the state of California, the medical defendants in the state malpractice lawsuit intervened and filed motions to dismiss.  On Friday, the McMath family filed its opposition to those motions.  Here are some highlights.

“In this action, Plaintiffs request that this Court, for the first time in any forum, examine overwhelming medical evidence that Jahi McMath currently exhibits function of numerous portions of her brain.”

“That Court on December 26, 2013, without explicitly ruling that Jahi’s death was ‘irreversible,’ found that Jahi at that time ‘had suffered brain death and was deceased as defined under Health and Safety Code sections 7180 and 7181.’ No evidence regarding Jahi’s neurological function has been heard by any court subsequent to this hearing, two years ago. That is the essence of her current claims.”

“Plaintiffs do not seek to re-litigate the condition of Jahi’s brain function in 2013, over two years ago, but instead request this Court to be the first court to consider whether or not, as of this date, Jahi exhibits some function of some portion of her brain.”

“Judge Grillo, in good faith, relied on that testimony, and ruled that as of that date, the proper legal standard had been met to declare Jahi brain dead per pertinent statute.  However, Dr. Fischer did not, and could not, accurately foretell the future. Jahi is the first child to have been declared brain dead who has survived this long and demonstrated intact brain matter, gone into puberty, and has electrical activity in her brain and an ability to respond to commands.

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

Resignation syndrome in refugee children – a new hypothesis

There has been much discussion about the so-called “apathetic children” in families seeking asylum in Sweden. You read that right: in Sweden, not in other countries. By all accounts, these children are genuinely ill. They do not simulate total lack of willpower; like inability to eat, speak and move. They are in a life-threatening condition and show no reactions even to painful stimuli. But why do we have so many cases in Sweden and not in other countries?

Several hundred cases have been reported, which in 2014 led the Swedish National Board of Health and Welfare to introduce a new diagnosis: resignation syndrome. The “Swedish” syndrome appears to be a mystery, almost like a puzzle to crack. There are asylum seeking families all around the world: why does this syndrome occur to such an extent in a single country?

If you want to think more about this puzzling question, I recommended a new article in Frontiers in Behavioral Neuroscience, with Karl Sallin (PhD student at CRB) as first author. The article is long and technical, but for those interested, it is well worth the effort. It documents what is known about the syndrome and suggests a new hypothesis.

A common explanation of the syndrome is that it is a reaction to stress and depression. The explanation sounds intuitively reasonable, considering these children’s experiences. But if it were true, the syndrome should occur also in other countries. The mystery remains.

Another explanation is that the mother attempts to manage her trauma, her depression and her needs, by projecting her problems onto the child.

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

Margaret Lock Offers Dementia’s Realism Instead of Hope

Cynthia Martin writes that unlike cancer’s new push to accelerate treatment (recently launched under the banner Cancer Moonshot2020), there is no Alzheimer’s MoonShot2020.

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William Utermohlen’s self-portraits, executed after his diagnosis of Alzheimer’s disease, are haunting. Not so much the first portrait he did in 1996 when he was 60 with its orange swaths and questioning eyes, but subsequent paintings and drawings charting a course of degradation and jumbling angst. These works of art, like the Alzheimer’s they document, are difficult to forget. I want to know – do the portraits exhibit impressions of himself or show decline in his artistic abilities? His paintings are a sombre end to a sobering speech given by visiting speaker Dr. Margaret Lock – the last in a series of NTE: Impact Ethics events for Alzheimer’s Awareness month (January 2016). Unlike many talks on Alzheimer’s and dementia, this one doesn’t end with hope, a hint of a cure or optimistic timeline – vaccine by 2025! – confidence via an exclamation mark.

Like researchers, every person in this packed hall has come seeking clues. Some of us have also come out of fear; we’ve come because of our unsettled guesses as to who will wear diapers and who will change them. More generally, we have come to hear Lock explain the conundrums of science. Lock is a realist and does not pander; she is firm in her belief that “research is not making the strides we’ve heard about.” Lock tells us Alzheimer’s is dementia’s most common form, “a diffuse multi-form syndrome that includes Lewy body.”

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.