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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.

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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.

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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.

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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.

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Surrogacy in American male same-sex couples

Of the 594,000 same-sex couple households in the United States, 115,000 have children

In 2014, approximately 37,800 male same-sex couples in the United States had children, most through gestational surrogacy.   Little is known about the reasons these couples have for choosing this technique to have a child. A study has now been published (see HERE) that has evaluated the reasons why same-sex couples choose surrogacy.

Most do so because of the genetic links established. Just over half of fathers (55.74%) were satisfied with surrogacy. All this is apart from the objective ethical difficulties that surrogacy entails.

Men with children

There is one group whose incomes are far above the rest: same-sex “married” men with children. Their income is rough $275,000, more than double the pretax income for heterosexual couples and same-sex married female couples with children. This is a select group of people for whom the cost of children is particularly high. Using a surrogate can cost $250,000, and adoptions can cost upward of $30,000.

Of all the ART available to intending parents, surrogacy is arguably the most controversial (Jadva, 2016). Only 19 states in the USA currently allow commercial gestational surrogacy to married same-sex couples and in 15 states it is practiced because no statute or published case law prohibits it (Creative Family Connection, 2016).

La entrada Surrogacy in American male same-sex couples aparece primero en Bioethics Observatory.

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.

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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.

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Human genetic editing (engineering) is here

A “hat tip” again to Wesley Smith, who at the National Review Online blog, provided a link to this week’s report in the MIT Technology Review that the first editing of genes in human embryos in the US is underway—and apparently not yet formally published—at an academic center in Portland, Oregon.  Similar efforts have been undertaken in China, but US scientists have been a little more tentative about taking this step in humans.

In 2015, US scientists were clearly against trying to initiate a pregnancy with an IVF embryo whose genes had been altered in the laboratory.  They were, apparently, divided on whether experiments on early human embryos, sperm, or eggs in the laboratory were “responsible.”

This blog discussed the matter back then.

Earlier this year, the National Academies of Science, Engineering, and Medicine were more open to proceeding with changing human genes in a way that would be permanent—inherited from generation to generation—as long as the process was done as carefully as they thought it could be. 

The work still appears to be held very close to the vest.  Funded by private money—the law prohibits public expenditures for this kind of work on humans—the MIT report says the Oregon scientists changed some genes (the MIT reporters did not find out which ones) in “many dozens” of IVF embryos that were created and destroyed specifically for research.

The ultimate goal sounds laudable:  repairing genes that cause inherited disease.  The posts linked to above reviewed some of these arguments, or provided further links to those discussions.

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.

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When Women are Surrogate Mothers: Is that work?

Alana Cattapan, Angela Cameron, and Vanessa Gruben warn that speaking about “compensation” is a way of avoiding difficult conversations about payment to surrogates.

__________________________________________

A recent Canadian Medical Association Journal (CMAJ) news article reported that the Canadian Fertility and Andrology Society (CFAS) has called for the federal government to reconsider the ban on payment for surrogacy in Canada. The article suggests that industry professionals and academics alike are coming around on compensation for surrogacy, with support growing all the time.

In Canada, payment for surrogacy, egg donation, and sperm donation is banned under the 2004 Assisted Human Reproduction Act. Under the Act, surrogates (like egg donors and sperm donors) can be reimbursed for receipted expenses. With a note from their doctor, surrogates can also receive some money for lost work-related income during pregnancy.

The Act states that this reimbursement of expenses must follow the relevant regulations. Until now, however, these regulations have never been drafted. After more than a decade, Health Canada is now in the throes of making them. This is occurring as surrogacy in Canada is expanding to accommodate more and more people from countries where surrogacy is more expensive, harder to access or banned completely.

Women Working in a Field by Winslow Homer 1867.

It is in this context that the CFAS (which is a part-medical association, part-industry organization representing the fertility industry and its doctors, lawyers, scientists and ethicists) has called for the government to reconsider the ban on payment.

 It is important to know that the market in surrogacy in Canada is a profitable one.

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.

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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.

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End-of-Life Healthcare Sessions at ASBH 2017

The 2017 ASBH
conference
 in October 2017 includes over 400 workshops, panels, and
papers in bioethics and the health humanities.  Here are ones that pertain
to end-of-life issues.


THURSDAY, OCTOBER 19


THU 1:30 pm:  End-of-Life Care and Decision-Making in the ICU – Limited
English Proficiency as a Predictor of Disparities (Amelia Barwise)


Importance: Navigating choices in predominantly English-speaking care settings
can present practical and ethical challenges for patients with limited English
proficiency (LEP). Decision-making in the ICU is especially difficult and may
be associated with disparities in health care utilization and outcomes in critical
care. 


Objective: To determine if code status, advance directives, decisions to limit
life support, and end-of-life decision-making were different for ICU patients
with LEP compared to English-proficient patients. 


Methods: Retrospective cohort study of adult ICU patients from
5/31/2011-6/1/2014. 779 (2.8%) of our cohort of 27,523 had LEP. 


Results: When adjusted for severity of illness, age, sex, education, and
insurance status, patients with LEP were less likely to change their code
status from full code to do not resuscitate (DNR) during ICU admission (OR,
0.62; 95% CI, 0.46-0.82; p


Conclusion: Patients with LEP had significant differences and disparities in
end-of-life decision-making. Interventions to facilitate informed
decision-making for those with LEP is a crucial component of care for this
group.


THU 1:30 pm:  “But She’ll Die if You Don’t!”: Understanding and
Communicating Risks at the End of Life (Janet Malek)


Clinicians sometimes decline to offer interventions even if their refusal will
result in an earlier death for their patients. For example, a nephrologist may
decide against initiating hemodialysis despite a patient’s rising creatinine
levels if death is expected within weeks even with dialysis.

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.

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Charlie Gard: Judge to Decide Where Baby’s Life Will End

July 26, 2017

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Chris Gard and Connie Yates want permission to take the 11-month-old home for his final days.

But Great Ormond Street Hospital (GOSH) said it was not practical to provide the level of life-support treatment to Charlie at the couple’s London home.

It says a hospice would be a more appropriate place for him.

The court hearing is due to resume at 14:00 BST.

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Image: Creative Commons Licence [Some Rights Reserved]   © Copyright David Hawgood and licensed for reuse under this Creative Commons Licence.

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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.