Tag: brain

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 It is expected that life support will be withdrawn in the days ahead.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

First case of deceased donor uterine transplantation. It is a relevant medical and social issue

Being able to resolve the reproductive problems suffered by women who have no uterus – whether due to an organic cause or functional abnormality of the uterus – is unquestionably a major medical and social issue.

The two possible solutions to this problem are uterus transplantation or surrogacy, the latter solution presenting objective ethical difficulties.

Uterus transplants to date have been performed using living donors, with unpredictable outcomes. Now, the first case of deceased donor uterine transplantation performed in the United States has been published. The recipient of the uterus was a woman with Mayer-Rokitansky-Kuster-Hauser syndrome, that is, she had no uterus.

The journal Fertility and Sterility has disseminated a video describing the essential steps in this transplantation process, particularly as regards selection of a suitable donor with no history of infertility or uterine malformations. The death of the donor should be determined by presentation of brain death but not cardiac death. The authors concluded that: “Uterine transplantation, although currently experimental, has gained the potential to become the first true treatment for uterine factor infertility. This procedure can become a promising option for the approximately 1.5 million women worldwide for whom pregnancy is not possible because of the absence of the uterus or presence of a nonfunctional uterus. Deceased donor uterine transplantation will further serve to broaden accessibility for this treatment.”

Ethical approach

For our part, as the organ donor is a deceased person with brain death (see true definition of this death HERE), we see no ethical issue for this practice; on the contrary, it seems an encouraging medical prospect to resolve the reproductive problem of women who have no uterus or whose uterus is not functionally useful, although the risk-benefit balance must always be taken into account, especially as regards the surgical act.

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

Neuroscience Offers Insights Into the Opioid Epidemic

July 21, 2017

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Most Americans say they’re interested in scientific discoveries, but they may be thinking of the kinds of findings that lead to new gadgets and wonder drugs. When it comes to discoveries about hazards and risks — especially the risks of those wonder drugs — Americans seem more likely to tune out.

Such ambivalence might help explain how opioid misuse became such a problem in America. Despite 20 years of warnings from scientists about the dangers of addiction, the rate of prescriptions has tripled between 1999 and today. It hit a peak around 2012 and has started to decline slightly, going from 81.2 per 100 people to a still-enormous 70.6 per 100, new data show. Indeed, according to the Centers for Disease Control and Prevention, U.S. doctors wrote 259 million prescriptions for potentially addictive painkillers in 2014 — enough for every adult in the country to have a bottle.

All the while, neuroscientists have found that opioids can cause long-term changes in the brain even after an addicted person experiences the severe nausea and other withdrawal symptoms typically associated with quitting. That lingering hazard might have given patients and prescribing physicians pause.

… Read More

Image: By PNAS – doi: 10.1073/pnas.1117206109, CC BY 2.5 br, https://commons.wikimedia.org/w/index.php?curid=18829817

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Bloomberg View

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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 News

Zika Rewrites Maternal Immunization Ethics

July 20, 2017

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Ever since the shocking realization in 1961 that the morning sickness pill thalidomide caused shortened limbs in babies, doctors have been extremely wary of giving any medicine to a pregnant woman—and testing experimental drugs has raised even more concerns. But the recent discovery that exposure to Zika virus in utero can cause severe brain damage and other problems in children triggered an international effort to develop a vaccine for pregnant women. A new report written by an ad hoc group of prominent researchers, bioethicists, clinicians, and drugmakers concludes that pregnant women should be included in trials of Zika vaccines, once safety in animals and nonpregnant adults is demonstrated. The risk/benefit issues spelled out in the report also apply to experiments with maternal immunization for other diseases, which are winning increasing support.

Researchers have been too reticent to include pregnant women in clinical trials of vaccines, contends the working group behind the report. “Even for the vaccines we now recommend in pregnancy, pertussis and flu, the original trials did not include pregnant women,” says Carleigh Krubiner, a bioethicist at the Johns Hopkins Berman Institute of Bioethics in Baltimore, Maryland, who is part of the group, which was sponsored by the London-based Wellcome Trust. “This project is trying to be more proactive.”

The half-dozen Zika vaccine trials now taking place only enroll women of childbearing age who are on contraception or have a sterile male partner. That is appropriate, according to the risk/benefit analyses spelled out in the report, as these early studies assess only safety and basic immune responses.

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

Brain Death – 3rd Edition by Wijdicks

This third edition introduces new research in the intensive care unit, newly unearthed historical data on important US-UK differences, a thorough discussion of US guidelines and how it is used in hospital practices, and compares guidelines used elsewhere in the world. In this incisive work, the many complexities of diagnosis and management of brain death are examined but it also illuminates cultural beliefs and bioethical problems, highlights the nature of conferences with family members, and captures several organ procurement issues. The book also includes 30 commonly asked practice problems to resolve diagnostic uncertainties and conflicts along with 12 video clips to assist in neurological evaluation.  

Chapter 1: History of Brain Death

A New Comatose State Appears

Defining Neurologic Criteria for Death in Us

Chapter 2: Neurology of Brain Death

The Pathology of Brain Death

Clinical Examination in Adults

The Clinical Determination of Brain Death in Children

Documentation

Teaching Brain Death Determination

Errors and Alleged Recoveries

Legal Definitions and Obligations

Chapter 3: International Criteria of Brain Death

Guidelines in the United Kingdom

Guidelines World Wide

Consensus for a Uniform World Wide Standard

Chapter 4: Beliefs About Brain Death

Religious Beliefs

Cultural Views

Religious Conflict Resolution

Chapter 5: Critics and Brain Death

The Uncertainty of Death

Emerging Controversies

Critique

Chapter 6: Procurement After Brain Death 

Transitioning to Organ Donation

Organ Procurement Organizations

Organ Donation Requests

Preparation for Determining Organ Suitability

Donation Protocols

Medical Management of the Organ Donor

Chapter 7: Clinical Problems in Brain Death and Organ Donation

1. The Qualifications of the Examiner

2. Clinical Mimics

3.

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

Why Zika Is Especially Hard On The Women Of Brazil

July 19, 2017

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It started with the task of keeping mosquitoes at bay — a task that often fell to the women and girls in a family. And it continues today with women shouldering much of the care for babies born with congenital Zika syndrome, which includes microcephaly, a birth defect characterized by a smaller than normal head and brain damage.

The government has not given women the support they need, says Margaret Wurth, a children’s rights researcher who worked on the study.

Wurth and her colleagues visited Brazil in 2016, a year after a state of emergency had been declared (it ended this May). They interviewed women (including mothers of children with microcephaly), men, officials from nongovernmental groups, medical service providers, researchers and others about their experiences related to Zika. They conducted interviews in Pernambuco and Paraíba, two states in northeastern Brazil particularly hard-hit by Zika.

… Read More

See Also: Pregnant Women and the Zika Virus Vaccine Research Agenda: Ethics Guidance on Priorities, Inclusion, and Evidence Generation

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NPR Goats and Soda

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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

Revising the Ethical Framework for Deep Brain Stimulation for Treatment-Resistant Depression

By Somnath Das

Somnath Das recently graduated from Emory University where he majored in Neuroscience and Chemistry. He will be attending medical school at Thomas Jefferson University starting in the Fall of 2017. Studying Neuroethics has allowed him to combine his love for neuroscience, his interest in medicine, and his wish to help others into a multidisciplinary, rewarding practice of scholarship which to this day enriches how he views both developing neurotechnologies and the world around him. 

Despite the prevalence of therapeutics for treating depression, approximately 20% of patients fail to respond to multiple treatments such as antidepressants, cognitive-behavioral therapy, and electroconvulsive therapy (Fava, 2003). Zeroing on an effective treatment of “Treatment-Resistant Depression” (TRD) has been the focus of physicians and scientists. Dr. Helen Mayberg’s groundbreaking paper on Deep Brain Stimulation (DBS) demonstrates that electrical modulation an area of the brain called subgenual cingulate resulted in a “sustained remission of depression in four of six (TRD) patients” These patients experienced feelings that were described as “lifting a void,” or “a sudden calmness.” (Mayberg et al. 2005). The importance of this treatment lies in the fact participants who received DBS for TRD (DBS-TRD) often have no other treatment avenues, and thus Mayberg’s findings paved the way for DBS to have great treatment potential for severely disabling depression. 

Image courtesy of Wikimedia Commons
Because DBS involves the implantation of electrodes into the brain, Dr. Mayberg and other DBS researchers faced intense scrutiny following publication of their initial findings regarding the ethics of using what to some seems like a dramatic intervention for TRD.

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

DNA-Encoded Movie Points Way to ‘Molecular Recorder’

Credit: Seth Shipman, Harvard Medical School, Boston

There’s a reason why our cells store all of their genetic information as DNA. This remarkable molecule is unsurpassed for storing lots of data in an exceedingly small space. In fact, some have speculated that, if encoded in DNA, all of the data ever generated by humans could fit in a room about the size of a two-car garage and, if that room happens to be climate controlled, the data would remain intact for hundreds of thousands of years! [1]

Scientists have already explored whether synthetic DNA molecules on a chip might prove useful for archiving vast amounts of digital information. Now, an NIH-funded team of researchers is taking DNA’s information storage capabilities in another intriguing direction. They’ve devised their own code to record information not on a DNA chip, but in the DNA of living cells. Already, the team has used bacterial cells to store the data needed to outline the shape of a human hand, as well the data necessary to reproduce five frames from a famous vintage film of a horse galloping (see above).

But the researchers’ ultimate goal isn’t to make drawings or movies. They envision one day using DNA as a type of “molecular recorder” that will continuously monitor events taking place within a cell, providing potentially unprecedented looks at how cells function in both health and disease.

The Harvard Medical School team, led by Seth Shipman and George Church, built their molecular recorder using the CRISPR/Cas complex, much touted on this blog as a gene-editing tool.

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 Prognosis for Whole Brain Death is…

Recent court proceedings bring the case of Jahi McMath back into the bioethical news. As you will recall, she had medical complications following a surgical procedure in 2013 and was declared brain dead. The family argued for continued life support, which the hospital denied (since she met the criteria for whole brain death). After much legal wrangling, she was transferred to New Jersey, where she… // Read More »

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

Charlie Gard and the Ethics Commentator

Guest Post: Daniel Sokol

‘Best interest’ cases, such as the Charlie Gard case, are fundamentally about medical ethics, although they are determined by a single judge in a court of law.

At the hearing last week, there were at least 4 express references to medical ethics.

The first appeared in the hospital’s “position statement”, drafted by Leading Counsel, Katie Gollop QC:

As to the disagreements [between the parents and the hospital], one is a difference of opinion about the risks, benefits and ethics of providing our compound nucleoside treatment for Charlie after a time when his brain had become profoundly affected by his genetic disease.”

The second was a reference to the Hippocratic Oath: Counsel for the parents stated that the decision to offer the proposed experimental treatment would be consistent with the Hippocratic Oath.  I discuss this – and my current view on the case – in a blog for the British Medical Journal.

The third was the mention by the parents’ barrister of a bioethicist, whose article was included in the family’s file of evidence to the Court.

The fourth was the decision to appoint a clinical ethicist to chair a Multidisciplinary Team meeting on Monday 17th July 2017.

It is no surprise, therefore, that ethicists have commented on the case.  As the court is not expected to make a decision until 25th July, and as we enter a quiet season for the media, many more commentaries will follow.

I attended part of the hearing in the High Court last week.  The room was packed with journalists, and the parties were well aware of this.  At one point in the proceedings, one barrister interrupted another and suggested that his submissions were misleading and an attempt to manipulate the press.  The judge agreed.  The hospital’s ‘position statement’, which a press officer handed to journalists at the lunch break, was drafted with the press at the forefront of the writer’s mind.  It would be naïve to think that the hospital, so reliant on donations, is immune from concerns about its reputation.

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.