Tag: legal aspects

Bioethics News

Organ donation for transplantation in children with cardiac arrest and dying person dignity

Premortem interventions before donation in circulatory arrest in children could have objective ethical problems 

(See our special reports about criterion of death and organs transplantation HERE)

Up until a few years ago, performing medical interventions in end-of-life situations had been proposed as actions centered on the best interests of the dying patient.

The growing demand for organs for transplantation has created a need to increase the number of organ donors (see HERE).

Since the number of brain-dead donors is currently insufficient to meet the needs of patients on the transplant waiting list, medical procedures have been developed in the last decade aimed at ensuring that the organs from donors in cardiac arrest are also suitable for successful solid organ transplantation (see HERE our article about the relation between excellent figures of organ donation and organ donors with cardiac arrest in Spain).

Nevertheless, in order to achieve sufficient organ viability in donors with cardiac arrest, a series of medical procedures need to be performed that have the main aim of reducing the warm ischaemia time to which these organs are subjected, in order to increase the chances of post-transplant success.

An article has recently been published in the Journal of Medical Ethics (1“Premortem interventions in dying children to optimise organ donation: an ethical analysis”, whose authors Joe Brierley and David Shaw analyze the ethical and legal aspects of premortem interventions performed in dying children, aimed at optimizing organ donation for transplantation following cardiac arrest.

Premortem interventions in pediatric patients for organ donation from an ethical perspective

This article examines the legislative aspects (specific to the United Kingdom), and also gives a description and analysis of the elements that, from an ethical perspective, might support – or contradict – the performance of premortem interventions in pediatric patients for organ donation.

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

Charlie Gard, the sick baby hospital doctors want to disconnect. Our medical and ethical assessement

He and his parents await the Judge’s decision regarding the possibility of withdrawing or not the life support who keep him alive and the possibility of receiving an experimental treatment in the United States

Medical aspects

Charlie was born on 4 August 2016. In October the same year, he was admitted to Great Osmond Street Hospital (GOSH-NHS) in London, and diagnosed with a disease that affects mitochondrial function, called mitochondrial DNA depletion syndrome (MDDS). This means that he cannot obtain sufficient energy for his muscles, kidneys, brain and other organs, which causes progressive muscle weakness and brain damage.

Although there seemed to be no specific treatment for the mitochondrial abnormality at that time, in January 2017, his mother became aware of an experimental treatment using nucleosides that was being evaluated in the United States in patients with a disease similar to Charlie’s. Consequently, his parents assessed the possibility of taking him to the US for treatment because, according to them, it might improve their son’s health by at least 10%.

At the same time, British newspaper “The Guardian” announced that the US Hospital that had the medication offered to ship it so that Charlie could be treated immediately, but GOSH (NHS hospital) disagreed, proposing instead to withdraw the child’s respiratory support.

In effect, New York-Presbyterian Hospital and Irving Medical Center, also in New York, published a statement saying that they were willing to admit and clinically evaluate Charlie, as they had FDA approval for the use of an experimental treatment using nucleosides.

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

Legal status of human-animal chimeras – hybrid embryos

In addition to the biomedical problems raised by human-animal hybridization, there are also objective legal problems.

A recent article in the Journal of Medical Ethics (2014; 40, 284-285) reviewed this topic following a debate in the United Kingdom (UK) House of Lords in December 2012. The underlying problem is to determine whether hybrids containing human biological material, mainly DNA, should be considered partially human and if so, what their legal status should be.

See our Special Report New advances and challenges in the production of human-animal chimeras

The Human Fertilisation and Embryology Act 2008 (HFE Act 2008) regulates the legal aspects of human-animal hybrids. These hybrids refer to any embryo containing human nuclear or mitochondrial DNA as well as animal nuclear or mitochondrial DNA, but in which the animal DNA is not predominant. Other categories of hybrids can be legally regulated by the “Animal Act 1986”.

However, deciding which of the two categories into which hybrid embryos should fall is not that easy.

The English Health Minister, Lord Darzi of Denham, stated that hybrid embryos should be regulated by human statutes when they are considered to be “predominantly” human, which is not easy to determine. In fact, a chimeric embryo in which non-human cells were initially predominant could continue to develop into a hybrid in which human cells predominate.

Lord Darzi also stated that chimeric embryos that are “functionally” predominantly human should also be considered as human. However, the term “functionally human” is ambiguous, which complicates the issue of its legal status.

It was therefore concluded that the UK parliament needs to more definitively determine the legal status of embryos containing human and animal genetic material, following an extensive, in-depth debate that must take into account public opinion on this matter.

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

UpToDate – Legal Aspects in Palliative and End of Life Care in the United States

I am delighted to contribute to UpToDate, starting with “Legal Aspects in Palliative and End of Life Care in the United States.”


UpToDate is an evidence-based clinical decision support resource which clinicians trust to make the right point-of-care decisions. More than 6,500 world-renowned authors, editors, and peer reviewers use a rigorous editorial process to synthesize the most recent medical information into trusted, evidence-based recommendations that are proven to improve patient care and quality. 


Over 1.3 million clinicians in 187 countries and nearly 90% of major academic medical centers in the United States rely on UpToDate to provide the best care. More than 80 research studies confirm widespread usage of UpToDate and the association of its use with improved patient care and hospital performance — including reduced length of stay, fewer adverse complications, and lower mortality.


UpToDate is a product of Wolters Kluwer Health.  I co-author a related publication for Wolters Kluwer Law and Business: the 1500-page reference Right to Die: The Law of End-of-Life Decisionmaking.

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

Euthanasia and assisted suicide. Attitudes and practice in countries where they have been legalised

Euthanasia and assisted suicide. Attitudes and practice in countries where they have been legalised

 The ethical and legal aspects of euthanasia and assisted suicide continue to be the subject of active controversy. Some countries have recently legalised these practices, while others are in the process of doing so. It therefore seems of interest to review this topic, which has been done in a thought-provoking study published in JAMA (see HERE).

The practice of euthanasia and assisted suicide is currently legalised in the Netherlands, Belgium, Luxemburg, Colombia and Canada. Assisted suicide, excluding euthanasia, is legal in 5 North American states (Oregon, Washington, Montana, Vermont and California) and Switzerland.

datos estadísticosPublic support for euthanasia and assisted suicide in the United States ranges between 47% and 67%. Although this support is increasing in Western Europe, it is declining in Central and Eastern Europe. In the United States, less than 20% of physicians have received requests for euthanasia and assisted suicide, and less than 5% have carried it out. In Oregon and Washington, less than 1% per year have prescribed medication for assisted suicide. In the Netherlands and Belgium, approximately half of doctors have received requests for euthanasia and assisted suicide. Between 0.3% and 4.6% of deaths have been a result of these practices in countries where they are legal; these figures were found to have increased after legalisation. More than 70% of cases were requested by patients with cancer. Pain is mostly not the main reason for requesting both practices. The authors concluded that euthanasia and assisted suicide are increasingly being legalised, that their practice is very limited, and that they principally involve patients with cancer.

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

Euthanasia and assisted suicide. Attitudes and practice in countries where they have been legalised

Euthanasia and assisted suicide. Attitudes and practice in countries where they have been legalised

 The ethical and legal aspects of euthanasia and assisted suicide continue to be the subject of active controversy. Some countries have recently legalised these practices, while others are in the process of doing so. It therefore seems of interest to review this topic, which has been done in a thought-provoking study published in JAMA (see HERE).

The practice of euthanasia and assisted suicide is currently legalised in the Netherlands, Belgium, Luxemburg, Colombia and Canada. Assisted suicide, excluding euthanasia, is legal in 5 North American states (Oregon, Washington, Montana, Vermont and California) and Switzerland.

datos estadísticosPublic support for euthanasia and assisted suicide in the United States ranges between 47% and 67%. Although this support is increasing in Western Europe, it is declining in Central and Eastern Europe. In the United States, less than 20% of physicians have received requests for euthanasia and assisted suicide, and less than 5% have carried it out. In Oregon and Washington, less than 1% per year have prescribed medication for assisted suicide. In the Netherlands and Belgium, approximately half of doctors have received requests for euthanasia and assisted suicide. Between 0.3% and 4.6% of deaths have been a result of these practices in countries where they are legal; these figures were found to have increased after legalisation. More than 70% of cases were requested by patients with cancer. Pain is mostly not the main reason for requesting both practices. The authors concluded that euthanasia and assisted suicide are increasingly being legalised, that their practice is very limited, and that they principally involve patients with cancer.

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

Research data, health cyberspace and direct-to-consumer genetic testing

We live in a global society, which means there are several actors that regulate both research and services directed at consumers. It is time again for our newsletter on current issues in biobank ethics and law. This time, Biobank Perspectives  lets you read about the legal aspects of direct-to-consumer genetic testing. Santa Slokenberga writes about her doctoral dissertation in law from Uppsala University and how the Council of Europe and the EU interact with each other and the legal systems in the member states. She believes direct-to-consumer genetic testing can be seen as a “test” of the European legal orders, showing us that there is need for formal cooperation and convergence as seemingly small matters can lead to large consequences.

We also follow up from a previous report on the General Data Protection Regulation in a Swedish perspective with more information about the Swedish Research Data Inquiry. We are also happy to announce that a group of researchers from the University of Oxford, University of Iceland, University of Oslo and the Centre for Research Ethics & Bioethics at Uppsala University received a Nordforsk grant to find solutions for governance of the “health cyberspace” that is emerging from assembling and using existing data for new purposes. To read more, download a pdf of the latest issue (4:2016), or visit the Biobank Perspectives site for more ethical and legal perspectives on biobank and registry research.

Josepine Fernow

This post in Swedish

Approaching future issues - the Ethics Blog

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

Ethics & Society Newsfeed: November 11, 2016

President-Elect Trump and Ethics

Trump and Pence on science, in their own words
Donald Trump and Mike Pence’s career and campaign track record of false claims about science, rejection of research conclusions and dangerous rhetoric on misconceptions such as vaccines and autism

Donald Trump Will Face Unprecedented Ethics Decisions as President
Conflicts of interest between Donald Trump’s business interests and his presidency

Ethics laws don’t require Trump to give up control of his ‘unprecedented’ portfolio
Donald Trump has no legal requirement to forfeit control of his businesses

Trump left something out of his Obamacare speech — the 21 million his plan leaves uninsured
The public health consequences of Donald Trump’s plan to repeal and replace Obamacare

Why women are making gynecologist appointments post-election
American women fear for birth control costs and access to health services like Planned Parenthood under a Donald Trump presidency

A Trump Bioethics Commission?
The future of a conservative, president-appointed bioethics commissions and where bioethics will stand

After the Election Bioethics Faces a Rocky Road
Addressing the future of academic bioethics through Donald Trump and conservative ideologies

Bioethics

People are tougher on poor, pregnant opioid addicts than well-off ones
Stigma in the American opioid academic experienced by pregnant women

The Ethics of Hunting Down ‘Patient Zero’
“Patient Zero” of the American AIDS epidemic has been exonerated and the ethics behind stigmatizing other “patient zeros”

Human–Animal Embryos: A Potential New Source of Transplant Organs
Scientists moving toward growing replacement parts for people through pigs, cows and other animals

Should family members of those with mental illness have access to their health information?

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

In the Journals May 2016 Part I by Melanie Boeckmann

Following Anna’s post on current special issues, here are abstracts from this month’s journal outputs.

American Ethnologist

Skill and masculinity in Olympic weightlifting: Training cues and cultivated craziness in Georgia

Perry Sherouse

At the Georgian Weightlifting Federation in Tbilisi, Georgia, a mainstay of coaching is the training cue, a shouted word or phrase that coaches use to prompt weightlifters to perform in a certain psychological, physical, or technical way. In this practice, coaches cultivate and naturalize dimensions of physiology and psychology, aligning masculinity with animality, lack of restraint, and emotional surfeit, and femininity with gracefulness, control, and good technique. Although Olympic weightlifting remains stereotypically hypermasculine, coaches compliment female weightlifters’ technique as superior to men’s and train their athletes to integrate masculine “nature” and feminine “culture” in the expression of physical strength. In doing so, coaches do not instill fully formed subjectivities but manage embodied forms, using exclamatory cues to disaggregate the athlete into action, affect, and anatomy. 

“I am a radioactive mutant”: Emergent biological subjectivities at Kazakhstan’s Semipalatinsk Nuclear Test Site

Magdalena E. Stawskowski

The Semipalatinsk Nuclear Test Site in Kazakhstan was conceived as an experimental landscape where science, technology, Soviet Cold War militarism, and human biology intersected. As of 2015, thousands of people continue to live in rural communities in the immediate vicinity of this polluted landscape. Lacking good economic options, many of them claim to be “mutants” adapted to radiation, while outsiders see them as genetically tainted. In such a setting, how do post-Soviet social, political, and economic transformations operate with radioactivity to co-constitute a “mutant” subjectivity?

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 Imaging and Neurofeedback: Has Fiction Become Reality?

By Carolyn C. Meltzer, MD

Dr. Carolyn C. Meltzer is a professor at the Emory University School of Medicine Departments of Radiology and Imaging Sciences, Psychiatry and Behavioral Sciences, and Neurology. She is also a member of the AJOB Neuroscience Editorial Board.

“Power is in tearing human minds to pieces and putting them together again in new shapes of your own choosing.”
George Orwell, 1984

In the iconic geopolitical thriller “The Manchurian Candidate,” advanced mind control techniques are used on a Korean War prisoner to turn him into an assassin. As we move into an era in which functional neuroimaging may be applied in ways akin to “mind reading,” such as applied to lie detection and economic choices, this fictional work more closely mimics reality.

Functional neuroimaging tools have helped us to tease out neuronal networks and to better understand how we think and act in health and disease. With the exception of few specific instances of validated clinical use (such as mapping of exquisite cerebral cortex prior to resecting a nearby tumor), most behavioral functional imaging studies require group, rather than individual data.

New research has focused on exploiting brain-computer interfaces that address therapeutic approaches to neurological and psychiatric conditions in individualized care settings. Recording brain activity and using it to modulate behavior or motor activity – or to seek a specific therapeutic outcome – has spawned the field of neurofeedback. Initial applications have used invasive approaches, such as deep brain stimulation in movement disorders and medically intractable depression. More recently, emphasis has turned to non-invasive approaches.

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.