Tag: diagnosis

Bioethics Blogs

Dementia Exit Options – Challenges of Advance VSED

Can you leave enforceable instructions for VSED in an advance directive? JoNel Aleccia (Kaiser Health News) addresses this question in a new article printed in USA Today and other newspapers across the country this weekend.


Nora Harris signed an advance directive after her Alzheimer’s diagnosis to prevent her life from being prolonged when her disease got worse. But she’s being kept alive with assisted eating and drinking against her stated wishes.



As I noted in the article, many states authorize either advance instructions for VSED or an appointed healthcare agent’s direction for VSED. But the advance directive must provide such authorization with extraordinary clarity. Unfortunately, Harris’ advance directive (like Margot Bentley’s advance directive in a similar case) was not sufficiently clear that VSED was desired.



I have a few articles on VSED forthcoming in two medical journals. For my past legal analyses, see here, here, and here.


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

Veteran Biopharma Exec Tries to Fund His Own Product

And sees firsthand how hard it is. Galvanized by his teenage son’s epilepsy diagnosis, Mayes started a new company to try to shepherd a promising inhaler technology for epilepsy through a key clinical trial

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

Search and destroy—or at least, select

This week’s issue of Nature carries a feature article on the explosion of preimplantation genetic diagnosis (PGD) in China.  Because women are having children later in life, partly because of relaxation of the old one-child policy; because Chinese culture sees it as a duty to seek to bear healthy children; because some Chinese want to try to enable their kids to exploit some features of… // Read More »

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

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 News

China’s Embrace of Embryo Selection Raises Thorny Questions

August 16, 2017

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Getting time with Qiao Jie is not easy. At 7:30 a.m., the line coming out of the fertility centre that she runs blocks the doorway and extends some 80 metres down the street. Inside, about 50 physicians on her team are discussing recent findings, but Qiao, a fertility specialist and president of Peking University Third Hospital in Beijing, is still in an early-morning consult.

When she finally emerges, she jumps to the topic at hand: spreading awareness of preimplantation genetic diagnosis (PGD), a procedure that helps couples undergoing in vitro fertilization (IVF) to avoid passing on genetic mutations that could cause disease or disability in their children. Qiao typically refuses interview requests, but she’s concerned that people aren’t getting the message about PGD fast enough. “Now, more and more diseases can be stopped — if not immediately, in the generation after next,” she says.

Early experiments are beginning to show how genome-editing technologies such as CRISPR might one day fix disease-causing mutations before embryos are implanted. But refining the techniques and getting regulatory approval will take years. PGD has already helped thousands of couples. And whereas the expansion of PGD around the world has generally been slow, in China, it is starting to explode.

… Read More

Image: By Zephyris at the English language Wikipedia, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=5971161

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Nature News

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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 Politics of Elder Care, Social Care, and the “Dementia Tax”: A View from the United Kingdom

By Richard Ashcroft
Professor Richard Ashcroft, an AJOB Neuroscience Editorial Board member, teaches medical law and ethics at both the undergraduate and postgraduate level in the Department of Law at Queen Mary University of London.

The United Kingdom has recently gone through a General Election. The main reason the election was called by Prime Minister Theresa May was to secure a stronger mandate for the ruling Conservative Party, which was governing with a small overall majority of 19 seats over the Opposition parties. PM May’s argument was that in the negotiations with the other member states of the European Union over the UK’s exit from that Union (Brexit), an increased majority would give her a stronger bargaining position. As the election turned out, the electorate returned the Conservatives with fewer seats, and PM May had to form a minority administration, with a partial agreement to support the Conservative Party made with one of the smaller parties, the Democratic Unionist Party, which only contests seats in Northern Ireland. As a result PM May has a working majority, but one that is more fragile, rather than stronger.
Commentators have suggested a number of reasons for this outcome, but there seems to be general agreement that a turning point in the electoral campaign was the release of the election manifesto of the Conservative Party. While there are many reasons that might explain the downturn in support for PM May, one particular policy announced in the manifesto, deemed the “dementia tax,” attracted widespread criticism. 

UK population distribution.
Image courtesy of Wikimedia Commons.

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

Pediatrician Discusses Ethics of Parents’ Online Posts

August 11, 2017

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Many parents are quick to post photos of their kids on social media or blog about their child’s health. Parents have learned a thing or two from this practice—from foods to entice picky toddlers to favorite remedies for rashes and other common ailments—and often turn to online communities to share their experiences and network with other families.

On one hand, blogging and posting on such sites as Facebook and Twitter raise questions of privacy and other concerns unique to the pediatric population. But posting such information often provides social and emotional support; this is particularly salient for parents of children with complex or critical illness.

“Since we know social support for parents with generally healthy children is important, it actually may be critical for parents of children with complex or life-limiting illness, particularly when a diagnosis requires daily care and monitoring,” said Dr. Silvana Barone, a pediatrician recently transplanted from Montreal who is currently a clinical fellow in pediatric hospice and palliative medicine at Johns Hopkins Hospital and a postdoctoral fellow at Johns Hopkins Berman Institute of Bioethics. She spoke at a recent NIH bioethics group discussion in Bldg. 50.

… Read More

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NIH Record

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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 News

Medicine’s Gender Revolution

How women stopped being treated as ‘small men’. Men and women respond differently to diseases and treatments for biological, social and psychological reasons. This is the first article in our series on Gender Medicine, where experts explore these differences and the importance of approaching treatment and diagnosis through a gender lens

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.