Tag: ethics

Bioethics Blogs

Grounding ethics from below: CRISPR-cas9 and genetic modification

By Anjan Chatterjee

The University of Pennsylvania

Anjan Chatterjee is the Frank A. and Gwladys H. Elliott Professor and Chair of Neurology at Pennsylvania Hospital. He is a member of the Center for Cognitive Neuroscience, and the Center for Neuroscience and Society at the University of Pennsylvania. He received his BA in Philosophy from Haverford College, MD from the University of Pennsylvania and completed his neurology residency at the University of Chicago. His clinical practice focuses on patients with cognitive disorders. His research addresses questions about spatial cognition and language, attention, neuroethics, and neuroaesthetics. He wrote The Aesthetic Brain: How we evolved to desire beauty and enjoy art and co-edited: Neuroethics in Practice: Mind, medicine, and society, and The Roots of Cognitive Neuroscience: behavioral neurology and neuropsychology. He is or has been on the editorial boards of: American Journal of Bioethics: Neuroscience, Behavioural Neurology, Cognitive and Behavioral Neurology, Neuropsychology, Journal of Cognitive Neuroscience, Journal of Alzheimer’s Disease, Journal of the International Neuropsychological Society, European Neurology, Empirical Studies of the Arts, The Open Ethics Journal and Policy Studies in Ethics, Law and Technology. He was awarded the Norman Geschwind Prize in Behavioral and Cognitive Neurology by the American Academy of Neurology and the Rudolph Arnheim Prize for contribution to Psychology and the Arts by the American Psychological Association. He is a founding member of the Board of Governors of the Neuroethics Society, the past President of the International Association of Empirical Aesthetics, and the past President of the Behavioral and Cognitive Neurology Society. He serves on the Boards of Haverford College, the Associated Services for the Blind and Visually Impaired and The College of Physicians of Philadelphia. 

In 1876, Gustav Fechner (1876) introduced an “aesthetics from below.” He contrasted this approach with an aesthetics from above by which he meant that, rather than defining aesthetic experiences using first principles, one could investigate people’s responses to stimuli and use these data to ground aesthetic theory.

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

Hard Lessons: Learning From The Charlie Gard Case

July 25, 2017

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by Dominic Wilkinson and Julian Savulescu

On the 24th July 2017, the long-running, deeply tragic and emotionally fraught case of Charlie Gard reached its sad conclusion (Box 1). Following further medical assessment of the infant, Charlie’s parents and doctors finally reached agreement that continuing medical treatment was not in Charlie’s best interests. It is expected that life support will be withdrawn in the days ahead.

Over the course of multiple hearings at different levels of the court in both London and Strasbourg, the Charlie Gard case has raised a number of vexed ethical questions (Box 2). The important role of practical ethics in cases like this is to help clarify the key concepts, identify central ethical questions, separate them from questions of scientific fact and subject arguments to critical scrutiny. We have disagreed about the right course of action for Charlie Gard,1 2 but we agree on the key ethical principles as well as the role of ethical analysis and the importance of robust and informed debate. Ethics is not about personal opinion – but about argument, reasons, and rational reflection. While the lasting ramifications of the case for medical treatment decisions in children are yet to become apparent, we here outline some of the potential lessons.

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Practical Ethics

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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

Eugenics in Tennessee

A recent news story from my home state of Tennessee brings up questions of informed consent, reproductive ethics, eugenics, opioid abuse, and other bioethical issues.  In May, White County judge Sam Benningfield issued an order that allows inmates to have their sentences reduced by thirty days if they consent to sterilization procedures: vasectomies for men and (reversible) Nexplanon implants for women.  Benningfield’s order is his response to the repeat drug offenders he sees in the courtroom.  He describes the sterilizations as a means to “encourage personal responsibility,” and also states that, “…if you reach two or three people, maybe that’s two or three kids not being born under the influence of drugs. I see it as a win, win.”

This order is less surprising, perhaps, when considered in light of the United States’ very recent history of eugenics and forced sterilizations. As Kyle Sammin writes at The Federalist,

“[Benningfield’s] idea of ‘trying to break a vicious cycle of repeat offenders’ is, nearly word-for-word, an echo of the Supreme Court’s reasoning in Buck v. Bell, the 1927 case that upheld Virginia’s policy of sterilizing state asylum inmates without their consent. The decision by Justice Oliver Wendell Holmes laid out a similar desire to break a cycle of reproduction by people the judge viewed as unworthy of life: ‘It is better…if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind….Three generations of imbeciles are enough.’”

Benningfield’s order deems inmates’ potential future children as unworthy of life because of their parents’ situations.

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

Hard lessons: learning from the Charlie Gard case

by Dominic Wilkinson and Julian Savulescu

 

On the 24th July 2017, the long-running, deeply tragic and emotionally fraught case of Charlie Gard reached its sad conclusion (Box 1). Following further medical assessment of the infant, Charlie’s parents and doctors finally reached agreement that continuing medical treatment was not in Charlie’s best interests. It is expected that life support will be withdrawn in the days ahead.

Over the course of multiple hearings at different levels of the court in both London and Strasbourg, the Charlie Gard case has raised a number of vexed ethical questions (Box 2). The important role of practical ethics in cases like this is to help clarify the key concepts, identify central ethical questions, separate them from questions of scientific fact and subject arguments to critical scrutiny. We have disagreed about the right course of action for Charlie Gard,1 2 but we agree on the key ethical principles as well as the role of ethical analysis and the importance of robust and informed debate. Ethics is not about personal opinion – but about argument, reasons, and rational reflection. While the lasting ramifications of the case for medical treatment decisions in children are yet to become apparent, we here outline some of the potential lessons.

1. Parents’ role in decision-making for children: We need to clarify harm

Much of the media attention to the Gard case has focussed on the rights of parents in decision-making for children, and whether the intervention of the courts in this case means that doctors frequently overrule parents in the UK.

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

Striking a Balance

By Peter Young

 

In April of this year, the Berman Institute and Johns Hopkins Hospital Ethics Committee held its monthly Ethics for Lunch case presentation focusing on how to manage patients who make racist, sexist, and otherwise offensive comments. The discussion, moderated by Dr. Joseph Carrese, featured panelists who have experienced racism/sexism in the clinic, and it allowed audience to gain insight from their perspectives.

 

During the discussion, there was mention that minority patients in an in-patient setting cannot choose their own doctor based solely on race, because Hopkins’ practice is to pair the best doctor with a patient’s medical needs. I was a bit confused how minority patients not being able to choose race-based concordance in an in-patient setting fits into the larger, nation-wide conversation of minority groups wanting safe spaces. For example, some argue the race of the physician affects the quality of care, and when the provider and patient’s race align, the provider can speak better to certain beliefs, religious practices, nutritional knowledge, and cultural norms. Also, there may be even subtler, yet equally important benefits of having your provider look like you, especially in our current political climate. This includes patient-compliance as well as the potential for less polarizing power dynamics in the provider-patient relationship.

 

Scholars like Dr. Dayna Bowen Matthew, author of Just Medicine and professor at University of Colorado, might argue that if a white, middle-class person tells an intercity, minority person to take their medication, that patient may be less likely to adhere.

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

ASBH Lifetime Achievement Awards & Cornerstone Awards – Bioethics and Medical Humanities

Lifetime Achievement Awards

ASBH announces two Lifetime Achievement Awards for longstanding achievement by an individual in bioethics and/or the medical humanities. Both recipients will make remarks at the 2017 ASBH Members’ Meeting and Award Presentations, Friday, October 30, 3:45 pm in Kansas City, MO.

Myra Christopher is recognized as the first leader of the Center for Practical Bioethics (CPB), an applied, real-world bioethics organization emphasizing ethics and action informed by thoughtful reflection, guided by academic discipline. Christopher’s work has changed how shared decision making among families helps to match the care a loved one receives with his or her wishes, how hospital ethics committees respect and advocate for the rights of patients, and how communities care for those with terminal illness.

Steven Miles, MD is honored for three and a half decades of research and education. He has published 6 books and over 160 articles and chapters on a breathtaking array of issues, an extraordinary contribution to bioethics scholarship. His career is also distinguished by the impact of his work beyond academia and his devotion to the reform needed to alleviate suffering, especially in contexts affecting the most vulnerable members of our global society.

Cornerstone Awards

ASBH announces two Cornerstone Awards for enduring contributions by an institution to the fields of bioethics and/or the medical humanities. These awards will be presented at the 2017 ASBH Members’ Meeting and Award Presentations.

For over 25 years, The ANA Center for Ethics and Human Rights has advocated for social justice and the protection of human rights and tirelessly provided ethical guidance, both theoretical and practical, at the state, national, and international levels.

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

Charlie Gard, Baby Doe and the Wisdom of Bill Bartholome

The family of Charlie Gard

The Charlie Gard case in the UK has captured international attention regarding the best interest of an 11-month old child with terminal illness whose parents and medical providers in London can’t agree on the best course of treatment and care.

The apparently irreconcilable disagreements between the parents and his care providers have extended from weeks into months and, according to the English news source The Telegraph on Wednesday, July 19, the impasse may likely continue. Reportedly, Mr. Justice Francis, the High Court judge managing the case, confirmed that they are “due to hold further hearings later this month,” following the much-awaited American neurologist’s examination of Charlie that took place earlier this week.

Should Charlie’s parents be granted permission, allowing him to receive the experimental treatment they seek on his behalf, or is what they seek not in Charlie’s best interest due to the severity of his illness and the uncertainty surrounding the benefit of the experimental treatment?
These difficult and highly emotional cases are not without precedent. An historical perspective may be helpful in exploring the ethical dimensions of how best to proceed in situations like these.

What follows is a reflection by Myra Christopher on the Center for Practical Bioethics’ work in developing Healthcare Treatment Decision Making for Minors, including infants, that is now more than two decades old.

– – – – – – – – – – –

“Don’t forget about children” was Bill Bartholome’s response when I asked, shortly before his death in 1999, how we could honor him.

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

Press Release – “Vale Charlie” Prof Julian Savulescu

Vale Charlie

At some point in all of our lives, we have to let go. One can only admire Connie Yates and Chris Gard who fought so hard for Charlie.

 

However, we should continue to question the original decision, and the way in which these decisions are made. Even if it is too late for Charlie now, we should improve how we make these decisions for the future.

Back in January, there was an option for a trial of treatment that had some chance of success, a world leading doctor willing and able to provide it, and, by April, the funds had been raised to achieve it without public funds. There were also the means to control and minimise Charlie’s suffering. I believe that a limited trial of treatment was in Charlie’s interests back then, given the only alternative for him was death.

 

Doctors opposed this because of the low chance of success combined with fears that the extra time in life support would be too painful.

 

4 months of the legal process has left us with no trial of treatment, and no chance now for Charlie. Yet Charlie had to go through all the suffering (and more) of being kept alive on life support.

 

No-one wanted this outcome. No-one believes this outcome was in Charlie’s best interests. There has got to be a better process. It has been traumatic for all the doctors, who have genuinely had Charlie’s interests at heart, and Connie and Chris, but most of all Charlie.

It has also raised other issues.

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

New artificial species. Could they affect biodiversity?

An article was recently published in the blog Practical Ethics, defending the use of synthetic biology and gene editing to obtain new organisms that do not exist in nature. Its author argues that if biodiversity is valuable, then it should be promoted, adding new species instead of conserving it as it is.

Contrary to the commonly assumed idea that current levels are optimal, he says that global biodiversity has been deeply affected by the acts of humans, having lost countless species. Moreover, he denies that ecosystems are fragile and finely balanced units, arguing on one side that the interactions between organisms tend to undermine their stability and, on the other, that the introduction of a new species does not have a major biological impact, statements that seem contradictory.

Artificial species and biodiversity

The aforementioned article lacks references that support these novel views on biodiversity and ecosystems, which contrasts with what has so far been understood and observed from the biological and environmental sciences. Nevertheless, even if his statements were true, this does not lead to the conclusion that it is advisable to increase the present biodiversity by producing new artificial species.

Neither does it mention whether the species produced should be non-pathogenic, or whether the researchers should take into account the type of organisms produced, their number, place of release, evolution perspectives (never completely controllable), organisms with which they would interact, etc. We do not believe it necessary to explain why it would not be appropriate to introduce organisms into the natural environment without first taking into account these and other considerations.

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

Call for HCEC Certification Commission Members

In Spring 2017, ASBH successfully completed market research and a role delineation survey, which are critical steps in the development of a sustainable and credible certification program. In July 2017, the ASBH board agreed to appoint an HCEC Certification Commission with responsibility for the development and administration of a certification program. 


For appointment to the Commission, ASBH seeks 3-5 clinical ethics consultants who reflect the interests of the general public in the availability and implementation of an HCEC credential and are representative of the stakeholder groups, including community hospitals and regional health systems, that have an interest in the quality, governance, and operation of the certification program. (The ASBH board will also appoint one member who represents the public or non-employer consumer interest.) The Commission is expected to meet face-to-face for at least one and possibly two 1-2 day meetings and 2-3 conference calls in the coming year.


Appointments will be for initial 1-year terms that may be renewed for a total of no more than 3 years of continuous service. In its first year, the commission will develop a detailed marketing plan and budget; select a testing company; initiate a call for volunteers and select item (exam question) writers for an entry-level exam based on the role delineation study; determine eligibility criteria and develop policies and procedures; and plan for the administration of the first exam. For this purpose, ASBH seeks clinical ethics consultants with relevant experience in governance, program management, and/or marketing. 


ASBH members who are interested in being considered for this work are invited to send
1.

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.