Tag: newborns

Bioethics Blogs

CAR-T cells: A drive to the future of cancer treatment

Conrad Fernandez describes the ethical challenges related to the use of CAR T-cell therapy for cancer patients.

__________________________________________

I am a pediatric oncologist and over the years have looked after hundreds of children with cancer – ranging in age from newborns into their early 20s. About a third of these children have suffered from leukemia. During my career of more than 25 years, I have seen my share of sadness and joy. Roughly one in five of these children have died – most often because of resistance intrinsic to their cancer but sometimes as a consequence of the toxicity of cancer therapy. These toxicities may occur acutely during the treatment (such as severe infections) or more insidiously appear years or decades later. A novel treatment approach that would overcome this resistance while avoiding chemotherapy toxicity would be most welcome.

A few years ago, I sat in a plenary session of the American Society of Hematology annual meeting (the preeminent hematology meeting in the world) where early phase CAR T-cell therapy was discussed. CAR (chimeric antigen receptor) T-cells are genetically reprogrammed immune cells that normally have the job of fighting infection or other foreign intruders into our bodies. CAR T-cells are manufactured to target a subtype of leukemia that is called B-cell leukemia – a type especially common in childhood. I thought to myself to take special note of what I was hearing, as this marked the potential for a paradigm shift in how we approached treatment of leukemia and perhaps other cancers. It is for these relapsed and refractory B-cell leukemia patients that the FDA’s Oncologic Drugs Advisory Committee (ODAC) has just recommended approval of CAR T-cell therapy – the first recommendation for approval of its kind.

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

CAR-T cells: A drive to the future of cancer treatment

Conrad Fernandez describes the ethical challenges related to the use of CAR T-cell therapy for cancer patients.

__________________________________________

I am a pediatric oncologist and over the years have looked after hundreds of children with cancer – ranging in age from newborns into their early 20s. About a third of these children have suffered from leukemia. During my career of more than 25 years, I have seen my share of sadness and joy. Roughly one in five of these children have died – most often because of resistance intrinsic to their cancer but sometimes as a consequence of the toxicity of cancer therapy. These toxicities may occur acutely during the treatment (such as severe infections) or more insidiously appear years or decades later. A novel treatment approach that would overcome this resistance while avoiding chemotherapy toxicity would be most welcome.

A few years ago, I sat in a plenary session of the American Society of Hematology annual meeting (the preeminent hematology meeting in the world) where early phase CAR T-cell therapy was discussed. CAR (chimeric antigen receptor) T-cells are genetically reprogrammed immune cells that normally have the job of fighting infection or other foreign intruders into our bodies. CAR T-cells are manufactured to target a subtype of leukemia that is called B-cell leukemia – a type especially common in childhood. I thought to myself to take special note of what I was hearing, as this marked the potential for a paradigm shift in how we approached treatment of leukemia and perhaps other cancers. It is for these relapsed and refractory B-cell leukemia patients that the FDA’s Oncologic Drugs Advisory Committee (ODAC) has just recommended approval of CAR T-cell therapy – the first recommendation for approval of its kind.

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

Memo To White Nationalists From A Geneticist: Why White Purity Is A Terrible Idea

On
August 14th, UCLA researchers Aaron Panofsky and Joan Donovan presented
findings of their study,  “When Genetics Challenges a Racist’s Identity: Genetic
Ancestry Testing among White Nationalists,”
 at a sociology
conference in Montreal. They’d analyzed 3,070 comments organized into 70
threads publicly posted to the (sometimes difficult to access) “social movement
online community”  Stormfront.

Former
KKK Grand Wizard Don Black launched Stormfront on March 27, 1995. Posts exceed
12 million, ramping up since the 2016 election season. Panofsky and Donovan’s
report has a lot of sociology speak, such as “scholars of whiteness” and
“affiliative self-fashioning,” amid some quite alarming posts – yet also
reveals a sophisticated understanding of genetics from some contributors.

A
WHITE NATIONALIST ONLINE MEET-UP: STORMFRONT

“We are the voice of the new, embattled White minority!”proclaims the
bold, blood-tinged-hued message on the opening page of Stormfront, the “community
of racial realists and idealists.”
 It’s a site for white nationalists,
who are a little less extreme than white supremacists, who want to dominate the
world from their pinnacle of a perceived racial hierarchy. The Stormfronters
seem more concerned with establishing their white purity – defined as “non-Jewish
people of wholly European descent.”

Yet
the lines between white nationalist and supremacist blur, as Stormfront states, “If Blacks or
Mexicans become a majority, then they will not be able to maintain the White
man’s social, cultural and economic systems because they do not have to (sic)
minds needed to do so.”

The
idea of white rights is rather new, catalyzed by the revolts of the truly
marginalized, murdered, abused, ignored, and enslaved.

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

Memo To White Nationalists From A Geneticist: Why White Purity Is A Terrible Idea

On
August 14th, UCLA researchers Aaron Panofsky and Joan Donovan presented
findings of their study,  “When Genetics Challenges a Racist’s Identity: Genetic
Ancestry Testing among White Nationalists,”
 at a sociology
conference in Montreal. They’d analyzed 3,070 comments organized into 70
threads publicly posted to the (sometimes difficult to access) “social movement
online community”  Stormfront.

Former
KKK Grand Wizard Don Black launched Stormfront on March 27, 1995. Posts exceed
12 million, ramping up since the 2016 election season. Panofsky and Donovan’s
report has a lot of sociology speak, such as “scholars of whiteness” and
“affiliative self-fashioning,” amid some quite alarming posts – yet also
reveals a sophisticated understanding of genetics from some contributors.

A
WHITE NATIONALIST ONLINE MEET-UP: STORMFRONT

“We are the voice of the new, embattled White minority!”proclaims the
bold, blood-tinged-hued message on the opening page of Stormfront, the “community
of racial realists and idealists.”
 It’s a site for white nationalists,
who are a little less extreme than white supremacists, who want to dominate the
world from their pinnacle of a perceived racial hierarchy. The Stormfronters
seem more concerned with establishing their white purity – defined as “non-Jewish
people of wholly European descent.”

Yet
the lines between white nationalist and supremacist blur, as Stormfront states, “If Blacks or
Mexicans become a majority, then they will not be able to maintain the White
man’s social, cultural and economic systems because they do not have to (sic)
minds needed to do so.”

The
idea of white rights is rather new, catalyzed by the revolts of the truly
marginalized, murdered, abused, ignored, and enslaved.

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.

Bioethics Blogs

What We Do When We Resuscitate Extremely Preterm Infants

by Jeremy R. Garrett, Brian S. Carter & John D. Lantos

This editorial is made available on bioethics.net. The editorial along with the target article and open peer commentary is available via tandfonline.com

Neonatal intensive care is one of the most successful medical innovations of the last half century. Every year, in the United States alone, nearly 500,000 babies are born prematurely. Before neonatal intensive care, most of those babies died, and those who survived often suffered significant life-limiting impairments. Today, most preemies survive without impairments.

In spite of this success, neonatal intensive care unit (NICU) care has always been viewed as ethically problematic. The objections to this care have taken different forms at different times.

Economists questioned whether neonatal intensive care was cost-effective. Careful studies showed that it was more cost-effective than any other form of intensive care, and even more cost-effective than many modalities of preventive care (including, for example, Pap smears).

Some parents claimed that doctors were not honestly informing them of the potential long-term sequelae of NICU care, and that, if honestly informed, many parents would choose palliative care. Careful studies showed that these parents were unusual. Most parents want more intensive care than even doctors and nurses think is appropriate, and they want it even when informed that survivors might be left with significant disabilities.

Bioethicists and doctors argued that neonatologists were playing God, that premature babies were not full-fledged persons, and that saving disabled babies was like an ill-conceived military mission. Each of these attempts to undermine the commitment made by parents, doctors, and society to saving preemies has been met with hard questions and strong rebuttals.

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

Is Involuntary Temporary Reversible Sterilization Always Wrong?

Ever since Janie Valentine’s blog post last week I have been thinking about the problem of repeat drug offenders and their children. My home state is also Tennessee so I read Judge Sam Benningfield’s order (to reduce prison sentences by 30 days for any drug offender willing to “consent” to voluntary temporary sterilization) with particular local and regional interest.

My office practice is on a street with more than one suboxone treatment clinic (a synthetic opioid designed to be used to assist in narcotic withdraw or as a substitute for pain management with less potential for abuse). It is not uncommon for me to see the parking lots of these clinics full of cars, with unsupervised children playing with other unsupervised children in the parking lot while their parents are inside the clinic receiving their treatment. No doubt some of these patients are opioid dependent and not necessarily opioid impaired. My point here is simply to point out the sheer volume of the opioid problem and also to highlight that this represents the families that are doing well. The children are still with their parents and the parents are not (obviously) under the jurisdiction of the court system.

One partner in my practice and his wife are foster parents and have opened their home to children of repeat drug offenders. These children have often been ordered by child protective services to be temporarily removed from their homes because of their parent’s incarceration related to a drug offense or court ordered treatment. The usual placement is a group of 2 or 3 siblings, often with one of the foster children a newborn baby in the throngs of opioid withdrawal.

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

A medical, legal and ethical approach of paediatric euthanasia in Belgium

We believe it interesting to refer to an article published in JAMA (311, 1963-1964) last May, which discussed various aspects of paediatric euthanasia en Belgium.

On 13 February 2014, the Belgian Parliament approved an amendment to the Act regulating euthanasia in Belgium, in order to legalise euthanasia in children with serious illnesses. The amendment in question, supported by the majority of Belgians and recently signed into law by King Philippe, will allow euthanasia in children who are permanently in severe pain. As in all cases of euthanasia, parental consent will be required, and it will exclude children with intellectual disabilities or mental illnesses and must be approved by a multidisciplinary medical team, who will carefully assess the mental capacity of these children.

The approval of this law marks the culmination of the gradual acceptance of euthanasia in Belgium. To date, the Netherlands, Belgium and Luxemburg are the only countries in the European Union in which euthanasia is legal.

Euthanasia for adults has been legal in Belgium since May 2002, unlike paediatric euthanasia. A preliminary study examining the opinion of physicians on child euthanasia showed that 69% were in favour of legalising it.

In March 2005, recognising that euthanasia in children was rising, without the due legal protection, doctors from the University of Groningen in the Netherlands published practice guidelines for euthanasia in severely disabled newborns. This document is in favour of the legalisation of active euthanasia in children “with a hopeless prognosis who experience […] unbearable suffering”. The protocol specifies that terminating the life of these children may be acceptable if four requirements are met: a) the presence of hopeless and unbearable suffering; b) the consent of both parents; c) consultation with physicians; and d) that the procedure for terminating the life of these children be in accordance with medical standards.

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

Baby Genome Sequencing for Sale in China

June 15, 2017

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A Boston-based DNA sequencing company is offering to decode the complete genomes of newborns in China, leading some to ask how much parents should know about their children’s genes at birth.

Veritas Genetics says the test, ordered by a doctor, will report back on 950 serious early- and later-life disease risks, 200 genes connected to drug reactions, and more than 100 physical traits a child is likely to have.

Called myBabyGenome, the service costs $1,500 and could help identify serious hidden problems in newborns, the company says.

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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

Human Breast Milk Sharing—Limited Regulation with Social Justice Implications

February 01, 2017

by Valeria Vavassori-Chen, MS Bioethics, Clarkson University & Icahn School of Medicine at Mount Sinai (2011)

Human Breast Milk Sharing—Limited Regulation with Social Justice Implications

After the birth of both of my children I found myself producing more milk than my kids could consume. I decided to donate my extra supply to any family whose child might need it. While researching the best venue to do so, I discovered a huge demand for free human breast milk and a completely unregulated market.

The benefits of breast milk over formula have been well documented in the medical literature. Human breast milk is naturally designed to meet all the baby’s nutritional needs, and it provides early innate immunity, which, when compared to formula-fed babies, reduces infant morbidity and mortality from infectious diseases. The World Health Organization urges that caregivers should “exclusively breastfeed infants for the child’s first six months to achieve optimal growth, development and health.” Additionally, some newborns with medical issues (especially premature babies whose digestive system is extremely immature) do not tolerate formula at all. Finally, there are many health risks associated with the use of formula.

Knowing the great benefits of human breast milk, many parents who are unable to produce enough breast milk have good reason to seek out private breast milk donors. There are, however, risks associated with human breast milk sharing. These include possible bacterial contamination and even transmission of HIV. Proper handling and storing are essential to reduce bacterial contamination, and a process called flash-heating can be used to inactivate the free-floating HIV virus.

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.