Tag: parents

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 Blogs

Does Female Genital Mutilation Have Health Benefits? The Problem with Medicalizing Morality

By Brian D. Earp (@briandavidearp)

Please note: this piece was originally published in Quillette Magazine.

 

Four members of the Dawoodi Bohra sect of Islam living in Detroit, Michigan have recently been indicted on charges of female genital mutilation (FGM). This is the first time the US government has prosecuted an “FGM” case since a federal law was passed in 1996. The world is watching to see how the case turns out.

A lot is at stake here. Multiculturalism, religious freedom, the limits of tolerance; the scope of children’s—and minority group—rights; the credibility of scientific research; even the very concept of “harm.”

To see how these pieces fit together, I need to describe the alleged crime.

* * *

The term “FGM” is likely to bring to mind the most severe forms of female genital cutting, such as clitoridectomy or infibulation (partial sewing up of the vaginal opening). But the World Health Organization (WHO) actually recognizes four main categories of FGM, covering dozens of different procedures.

One of the more “minor” forms is called a “ritual nick.” This practice, which I have argued elsewhere should not be performed on children, involves pricking the foreskin or “hood” of the clitoris to release a drop of blood.

Healthy tissue is not typically removed by this procedure, which is often done by trained clinicians in the communities where it is common. Long-term adverse health consequences are believed to be rare.

Here is why this matters. Initial, albeit conflicting reports suggest that the Dawoodi Bohra engage in this, or a similar, more limited form of female genital cutting – not the more extreme forms that are often highlighted in the Western 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.

Bioethics Blogs

Does Female Genital Mutilation Have Health Benefits? The Problem with Medicalizing Morality

Does Female Genital Mutilation Have Health Benefits? The Problem with Medicalizing Morality

By Brian D. Earp (@briandavidearp)

Please note: this piece was originally published in Quillette Magazine.

 

Four members of the Dawoodi Bohra sect of Islam living in Detroit, Michigan have recently been indicted on charges of female genital mutilation (FGM). This is the first time the US government has prosecuted an “FGM” case since a federal law was passed in 1996. The world is watching to see how the case turns out.

A lot is at stake here. Multiculturalism, religious freedom, the limits of tolerance; the scope of children’s—and minority group—rights; the credibility of scientific research; even the very concept of “harm.”

To see how these pieces fit together, I need to describe the alleged crime.

* * *

The term “FGM” is likely to bring to mind the most severe forms of female genital cutting, such as clitoridectomy or infibulation (partial sewing up of the vaginal opening). But the World Health Organization (WHO) actually recognizes four main categories of FGM, covering dozens of different procedures.

One of the more “minor” forms is called a “ritual nick.” This practice, which I have argued elsewhere should not be performed on children, involves pricking the foreskin or “hood” of the clitoris to release a drop of blood.

Healthy tissue is not typically removed by this procedure, which is often done by trained clinicians in the communities where it is common. Long-term adverse health consequences are believed to be rare.

Here is why this matters. Initial, albeit conflicting reports suggest that the Dawoodi Bohra engage in this, or a similar, more limited form of female genital cutting – not the more extreme forms that are often highlighted in the Western 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.

Bioethics News

Pediatrician Discusses Ethics of Parents’ Online Posts

August 11, 2017

Be the first to like.
Share

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

Be the first to like.
Share

NIH Record

Tags: , , , ,

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

The ‘Weird’ First Fortnight of the Foetus: Implications for the Abortion Debate

Guest Post: William Simkulet
Paper: The Cursed Lamp: The Problem of Spontaneous Abortion

For many people, the moral status of abortion stands or falls whether or not a human fetus is morally comparable to you or I; whether its death is a significant loss.  Many people believe human fetuses have a right to life from conception, and thus conclude that there is good reason to think induced abortion is seriously morally wrong.  Judith Jarvis Thomson challenges this belief, constructing a scenario where she believes it is morally acceptable to end the life of a person because although he has a right to life, his right to life does not give him a right to use your body.  Her example should be familiar:

Violinist:  You wake up in the hospital, surgically attached to a violinist.  Your doctor explains that last night the Society of Music Lovers kidnapped the two of you and performed the surgery.  The violinist has a serious condition that will result in his death soon unless he remains attached to your kidneys for the next 9 months (you alone are biologically compatible).

The violinist has a right to life, and surely you are free to let him remain attached to your body to save his life.  It would be a great kindness for you to do so, but Thomson says that the violinist’s right to life does not give him the right to use your body.  Anti-abortion theories that focus on the moral status of the fetus neglect to show why the fetus’s moral status – its argued for right to life – would give it a right to use the woman’s body.

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

Vaccination Rate Jumps in CA After Tougher Inoculation Law

The vaccination rate for California’s kindergartners soared this fall from the previous year, fueled by a state law that made it significantly tougher for parents to exempt schoolchildren from shots

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

NIH Family Members Giving Back: Charlotte Phillips

Caption: Charlotte Phillips during a visit to a Missouri Mennonite community.
Credit: Richard Hillman

At 1 a.m., most people are fast asleep in their beds. But Charlotte Phillips sometimes finds herself up at that odd hour, waiting anxiously in a deserted Missouri parking lot far from her home. Phillips drives there to meet a contact for a very special delivery: a packet of cheek swabs and blood samples from a newborn Mennonite baby at risk of a life-threatening genetic condition called maple syrup urine disease (MSUD).

For more than two decades, Phillips, an NIH grantee at the University of Missouri, Columbia, has volunteered to ensure that the DNA in these swabs and samples is tested for MSUD within hours of a baby’s birth. If found to be positive for the condition, the baby can receive a needed special formula. Without it, the baby would suffer brain damage within days from its inability to break down amino acids in protein-rich foods, including breast milk and standard infant formula. Hurrying off at a moment’s notice isn’t always convenient, but Phillips, who is not Mennonite, feels a personal calling to do it. She wouldn’t want any babies to die.

MSUD is named for the sweet smell associated with the urine of people left untreated for the condition. The lifelong condition is exceedingly rare, affecting about 1 in 185,000 infants [1]. But, it’s relatively common among Old Order Mennonites, affecting about 1 in 380 infants. That’s because many Mennonites carry one copy of the mutated gene, meaning they won’t develop MSUD but can pass it on to their children if their spouse is also a carrier.

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.