Tag: justice

Bioethics Blogs

Reproducing the Speculative: Reproductive Technology, Education, and Science Fiction by Kaitlyn Sherman

Walter, a Synthetic, quietly makes his rounds in the brightly lit, pristine interior of the Covenant, a Weyland Corporation Spaceship. Fingers pressed to the translucent, impermeable glass, he checks the status of each crew member as they rest in their cryochambers, suspended in chemically-induced comas until they reach their destined planet in seven years and four months’ time. The ship’s artificial intelligence system, Mother, chimes, “Seven bells and all is well.” Reassured of their security, Walter moves on to the next zone, where another 2,000 cryochambers contain sleeping colonists from Earth. This zone also features a panel of drawers, each housing dozens of embryos—over 1,100 second-generation colonists. They are packed individually into river-stone sized ovoids; clear, solid, egg-like. Amid the rows, an embryo has died, and its artificial uterine-sack is clouded and dark. Observing it briefly, Walter takes it from its socket with a set of tongs and places it into a biohazard bin. The Covenant is on a mission to colonize a habitable, distant planet. Their ship contains everything that could be useful in setting up a new colony: terraforming vehicles, construction materials, and human life itself. Even though these frozen embryos aren’t yet actively developing, they reflect a technology that allows for such a feat, while ensuring a population boom that is not dependent upon the limited space of mature female colonists’ wombs.

This scene is part of the opening sequence of the latest film in Ridley Scott’s Alien franchise. Alien: Covenant (2017) is the most recent science fiction film to illustrate advances in reproductive technologies, especially that of ectogenesis, or external gestation and birth.

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: An Ethical Analysis of a Legal non-Problem

(Cross-posted from EJIL: Talk!)

For those with an internet connection and an interest in current affairs, the story of Charlie Gard been hard to avoid recently.  A decent précis is available here; but it’s worth rehearsing.

Shortly after his birth, Charlie’s health began to deteriorate, and he was diagnosed with a terminal and incurable mitochondrial DNA depletion syndrome.  By March 2017, Charlie needed artificial ventilation, and doctors at Great Ormond Street Children’s Hospital (GOSH) applied to the High Court for confirmation that removing that ventilation would be lawful, having judged that it was not in his best interests.  This was contested by his parents, Chris Gard and Connie Yates; the High Court ruled in favour of GOSH.  This was confirmed by the Supreme Court and the European Court of Human Rights.  During all this time, Charlie remained ventilated.

In the High Court, Mr Justice Francis said that his decision was subject to revision should new evidence emerge favouring continued treatment; in July, Charlie’s parents returned to the High Court, claiming that Charlie might benefit from an experimental treatment being offered by Professor Michio Hirano of Columbia University.  However, as proceedings advanced, it became clear that Hirano’s proposed treatment had never been used on patients like Charlie, that he had neither seen Charlie nor read his notes when he offered the treatment, and that he had a financial interest in that treatment.  The position statement issued by GOSH on the 24th July barely hides the hospital’s legal team’s exasperation.  On the 24th July, Charlie’s parents dropped their request for continued treatment.  The details of Charlie’s palliative care were still disputed; his parents wanted it to be provided at home, with ventilation maintained for a few days.  The High Court ruled against this on the 27th July.  Charlie was moved to a hospice; his ventilator was removed, and he died on the 28th July, a few days before his first birthday.

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

Right to Try: Why Logic and Facts Won’t Win This One

by Craig Klugman, Ph.D.

Last week the U.S. Senate passed bill S. 204, the Trickett Wendler Right to Try Act of 2017. Trickett Wendler was a woman with ALS. The ALS association and her family lobbied Congress to support this bill to give all patients living with a terminal illness the “right” to purchase experimental drugs from pharmaceutical companies. Essentially, this bypasses the FDA’s compassionate use program. Instead of filing an application for FDA compassionate use (which the FDA approves 99% of the time), the patient asks the drug manufacturer directly. As I have written in this space before, such laws threaten public health efforts through the FDA to ensure safe and efficacious pharmaceuticals.

Currently, 37 states have such right-to-try laws and more have considered them. The push for these laws begins with the Barry Goldwater Institute, a libertarian think-tank, funded in part by the Koch brothers. Last month I had the surreal experience of debating two right-to-try supporters (one from a business school and one from the Goldwater Institute) about these laws which they base in a “right to self-medicate.” There were two of us against self-medication and two in favor of it.  You can read the commentaries and responses of the debaters here.

In this essay, I do not plan to restate my arguments against right-to-try. You can read my thoughts on this policy here and here. Instead, this post will examine the tools of argumentation that my opponents employed in the debate. It is important to show their debate techniques so that we all have a better understanding of how to analyze claims to support right-to-try and to realize why better facts and better arguments are falling on deaf ears.

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

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. 

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

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.

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

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.