Tag: justice

Bioethics Blogs

Charlie Gard Post-Mortem: Could He Have Been Saved?

Charlie Gard would have turned one year old tomorrow.

Two days before the British infant died of a mitochondrial disease on July 28, a short article in MIT Technology Review teased that Shoukhrat Mtalipov and his team at Oregon Health & Science University and colleagues had used CRISPR-Cas9 to replace a mutation in human embryos, a titillating heads-up that didn’t actually name the gene or disease.

Yesterday Nature published the details of what the researchers call gene correction, not editing, because it uses natural DNA repair. I covered the news conference, with a bit of perspective, for Genetic Literacy Project.

Might gene editing enable Charlie’s parents, who might themselves develop mild symptoms as they age, to have another child free of the family’s disease? Could anything have saved the baby?

A TRAGIC CASE

The court hearing testimony on the case between Great Ormond Street Hospital (GOSH) and the family, published April 11, chronicles the sad story. The hospital had requested discontinuing life support based on the lack of tested treatment.

Charlie was born August 4, 2016, at full term and of a good weight, but by a few weeks of age, his parents noticed that he could no longer lift his head nor support any part of his body. By the October 2 pediatrician visit, Charlie hadn’t gained any weight, despite frequent breastfeeding. After an MRI and EEG, Charlie had a nasogastric tube inserted to introduce high-caloric nutrition.

By October 11, the baby was lethargic, his breathing shallow. So his parents, Connie Yates and Chris Gard, took him to GOSH.

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 Post-Mortem: Could He Have Been Saved?

Charlie Gard would have turned one year old tomorrow.

Two days before the British infant died of a mitochondrial disease on July 28, a short article in MIT Technology Review teased that Shoukhrat Mtalipov and his team at Oregon Health & Science University and colleagues had used CRISPR-Cas9 to replace a mutation in human embryos, a titillating heads-up that didn’t actually name the gene or disease.

Yesterday Nature published the details of what the researchers call gene correction, not editing, because it uses natural DNA repair. I covered the news conference, with a bit of perspective, for Genetic Literacy Project.

Might gene editing enable Charlie’s parents, who might themselves develop mild symptoms as they age, to have another child free of the family’s disease? Could anything have saved the baby?

A TRAGIC CASE

The court hearing testimony on the case between Great Ormond Street Hospital (GOSH) and the family, published April 11, chronicles the sad story. The hospital had requested discontinuing life support based on the lack of tested treatment.

Charlie was born August 4, 2016, at full term and of a good weight, but by a few weeks of age, his parents noticed that he could no longer lift his head nor support any part of his body. By the October 2 pediatrician visit, Charlie hadn’t gained any weight, despite frequent breastfeeding. After an MRI and EEG, Charlie had a nasogastric tube inserted to introduce high-caloric nutrition.

By October 11, the baby was lethargic, his breathing shallow. So his parents, Connie Yates and Chris Gard, took him to GOSH.

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

Festival of Death and Dying

In contemporary Western culture death and dying are generally regarded as something to fight against, deny, hide from public view and above all fear. 


But what if we were to look at them differently? Despite understandable fear and denial, we may have very good reasons to want to learn more about death and dying. Thinking about and experiencing mortality–our own and that of others–can make us our lives richer, deeper and more valuable to us. Mortality in truth is the intensification of life.


This September, check out the first Melbourne edition of the Festival of Death and Dying. There will be over 20 participatory workshops, performances, talks and ceremonies on different aspects of death and dying over two days. In addition to talks and discussions, you will have experiences, which do justice to the full spectrum of what is at stake in mortality. 

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

2nd Biennial Kaiser Permanente National Bioethics Symposium – Social Justice, Vulnerable Populations, and Bias

This November join Kaiser Permanente for its 2nd Biennial National Bioethics Symposium – Social Justice, Vulnerable Populations, and Bias.

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

Sterilization for Prisoners Is Not New and Shows That Studying History is Essential

by Craig Klugman, Ph.D.

In 1927, Supreme Court Justice Oliver Wendell Holmes ruled that Carrie Buck and her baby could be sterilized because of a perception that they were “mental defectives.” In the 20th century, 32 states had federally funded programs that sterilized “undesirable” populations. Approximately 60,000 people in the U.S. were sterilized without their consent or even knowledge of the procedure. This history made an unexpected reappearance last week when a Tennessee judge offered to reduce the jail sentences of prisoners if they underwent sterilization.

The inmates were offered vasectomies (males) or contraceptive implants (females) in exchange for him shaving 30 days off of their prison sentences. The offer was popular as 70 inmates signed up (32 women and 38 men). The inmates were convicted of drug offenses and Judge Sam Benningfield said he was offering them “an opportunity to take personal responsibility and give them a chance, when they do get out, to not to be burdened with children…This gives them a chance to get on their feet and make something of themselves.”

The primary purpose in this was to try to reduce the number of children born drug dependent or suffering the consequence of in vitro drug exposure…the number of children who would eventually wind up in foster care,” the Judge said in a statement. He claims that the offer was “strictly voluntary…no one is forced to participate…it is no way a eugenic program.” Of course, the Judge presumes that inmates have true freedom of choice in 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 News

The Charlie Gard case. An ultimate dispassionate ethical reflexion

It is dangerous to exclude ethical judgment from medical decisions in which death is knocking at the door of life

In medical cases in which death comes knocking at the door of life, circumstances arise that are not easy to judge and even less easy to resolve. Such cases can be paradigmatic, like that of Charlie Gard. I believe, therefore, that the first thing we must do is to treat all parties with respect and courtesy, especially those who most suffer for being the protagonists of the events, in this instance the sick child and his parents.

From an ethical point of view, there are a number of aspects that should be evaluated. If I forget one, it is not with the intention Great Ormond Street Hospital doctors. Aspects that should be evaluatedof ignoring it, but because of my own limitations.

Great Ormond Street Hospital (NHS) doctors

To begin with, it should be said that Great Ormond Street Hospital (GOSH) is a leading children’s hospital, one of the most prestigious in the United Kingdom, so we should assume that its medical team — and in all likelihood those who took care of Charlie — are highly professional.

Gosh pleaded for Charlie to be taken off the mechanical ventilation

In April this year, when Mr Justice Francis issued his first verdict, the team from the London hospital pleaded for Charlie to be taken off the mechanical ventilation keeping him alive. This meant the immediate death of the child.

Around the same time, a distinguished American doctor, Dr Michio Hirano, offered Charlie’s parents the possibility of treating the baby with a novel therapy, which, it seems, had shown some beneficial effect in another American child who had a disease similar to that of Charlie’s (Child tried by the experimental treatment Charlie Gard’s) In my opinion this offer ethically conditioned the decision taken by the doctors at GOSH.

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

Criminal Law and Neuroscience: Hope or Hype?

By Stephen J. Morse

Stephen J. Morse, J.D., Ph.D., is a lawyer and a psychologist. He is Ferdinand Wakeman Hubbell Professor of Law, Professor of Psychology and Law in Psychiatry, and Associate Director of the Center for Neuroscience & Society at the University of Pennsylvania. Professor Morse is also a Diplomate in Forensic Psychology of the American Board of Professional Psychology. He has been working on the relation of neuroscience to law, ethics and social policy for over two decades, has written numerous articles and book chapters on these topics and has edited A Primer on Neuroscience and Criminal Law (Oxford University Press, 2013, with Adina Roskies). He was previously Co-Director of the MacArthur Foundation Law and Neuroscience Project and was a member of the MacArthur Foundation Law and Neuroscience Research Network. Professor Morse is a recipient of the American Academy of Forensic Psychology’s Distinguished Contribution Award, and a recipient of the American Psychiatric Association’s Isaac Ray Award for distinguished contributions to forensic psychiatry and the psychiatric aspects of jurisprudence. 

The discovery of functional magnetic resonance imaging (fMRI) in 1991, which permits non-invasive imaging of brain function, and the wide availability of scanners for research starting in about 2000 fueled claims that what we would learn about the brain and behavior would transform and perhaps revolutionize criminal law. Most commonly, many thought that traditional notions of criminal responsibility would be undermined for various reasons, such as demonstrating that people really cannot control themselves as well as we believe, or as indicating that more action was automatic, thoughtless and non-rational than we think.

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 Abstracts! Beyond Disadvantage: Disability, Law, and Bioethics – PFC’s 2018 Annual Conference

“Congress acknowledged that society’s accumulated myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairment.” Justice William J. Brennan, Jr., School Bd. of Nassau, Fl. v. Arline, 480 U.S. 273 … Continue reading

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

UK Courts Again Overrule Parents, Authorizing Clinicians to Withhold Treatment, Citing Gard

At the end of June, Mr. Justice Baker of the High Court of Justice Family Division cited the Gard case in making a similar ruling.


HK was a 3-month old baby with catastrophic injuries.  The court balanced the factors weighing in favor of treatment:(a) the parents’ wishes, and (b) the presumption in favor of life.  Again that, the court weighed the fact that (c) treatment offered no prospect of benefit, and (d) treatment probably imposed suffering.


The court ruled that it was lawful and in HK’s best interest that:
1. There be no neurosurgery intervention.
2. That there be no CPR.
3. That there be no escalation of treatment.

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

Things Which Have Once Been Conjoined: Science Fiction, Contagion, and Magic in the Age of Social Media by Samuel Gerald Collins

There are many interesting formations that might be called networked phenomena. Homophily and the tendency towards triad closure. Scott Feld’s Rule (I’m more likely to make friends with someone who has more friends than me). Small world phenomena (those 6 degrees of separation). “The Strength of Weak Ties” (reportedly the most cited sociology paper in history). In all, a series of social forms that complicates typical binarisms like individual versus group.

All of these have their positive and negative sides, but few networked phenomena have been met with more ambivalence than that of contagion, the idea that things (memes, viral videos, fashion) spread from person to person in a way that is similar to an epidemic; that is, people believe certain things or participate in certain behaviors without necessarily having “decided” to do so. Instead, the chances of “contracting” an idea, a fashion, or a new technology come down to the structural position in a network—a question, for example, of k-threshold models, where the chance of contagion depends upon the topology of connections vis-à-vis other infected nodes.

Given its identification with epidemiological contagion, it is not surprising that social contagion brings with it a negative valence, conjuring up fears of loss of autonomy, of being reduced to “hosts” for the “viral” propagation of information in a network. Contagion is at the heart of the fear and fascination of the zombie. It is also part of the latest panic in politics, one that centers on a vision of an electorate easily manipulated through fake news propagated through social media.

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.