Tag: parents

Bioethics Blogs

“She Can’t Help The Choices She Makes”

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STUDENT VOICES | CHYNN PRIZE FIRST-PLACE WINNER

By Madeleine Cardona

I will never forget the day my mother got diagnosed. I could swear that just yesterday I was thirteen years old waiting anxiously to be called in from the waiting room of some fancy New York State doctor’s office. I was young, but I had some idea of what was going on. I knew my parents and I were there because they were going through a divorce and fighting for custody of me. What I did not know was that we were about to endure a court-ordered psychiatric evaluation and that the results were going to change my life forever.

“Madeleine, your mom is very sick,” the psychiatrist attempted to explain to me. I did not understand. I did not know a sick person could look perfectly healthy. “It’s not a physical sickness, it’s in her head. She has a mental disorder called Paranoid Schizophrenia.” She went on using big words to explain how my mother’s brain “wasn’t like other people’s brains.” I sat there listening closely, hanging on every word the woman was saying to me. “She can’t help the choices that she makes, it’s not her fault that she is the way that she is. She needs help.” Every day since that day in the doctor’s office, that remark replays in my head over and over. “She can’t help the choices she makes.”

That is what gave me the most trouble. I sat around for years and years watching the choices that my mother was making, unable to intervene.

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

Robotic Exoskeleton Could Be Right Step Forward for Kids with Cerebral Palsy

More than 17 million people around the world are living with cerebral palsy, a movement disorder that occurs when motor areas of a child’s brain do not develop correctly or are damaged early in life. Many of those affected were born extremely prematurely and suffered brain hemorrhages shortly after birth. One of the condition’s most common symptoms is crouch gait, which is an excessive bending of the knees that can make it difficult or even impossible to walk. Now, a new robotic device developed by an NIH research team has the potential to help kids with cerebral palsy walk better.

What’s really cool about the robotic brace, or exoskeleton, which you see demonstrated above, is that it’s equipped with computerized sensors and motors that can detect exactly where a child is in the walking cycle—delivering bursts of support to the knees at just the right time. In fact, in a small study of seven young people with crouch gait, the device enabled six to stand and walk taller in their very first practice session!

For people with cerebral palsy, crouch gait is now treated with a variety of approaches, often including wearing orthotic ankle braces that help to stabilize their legs. Still, about half of kids with cerebral palsy can’t walk by early adulthood. Their muscles simply can’t keep up with their growing bodies.

That’s led to development of many robotic training devices, though most are still restricted to use in a supervised clinical setting. In the new study, led by Thomas Bulea at the NIH Clinical Center in Bethesda, MD, the team wanted to develop a wearable system for potential home use to help keep more kids walking as they grow into adulthood.

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

FDA Approves First CAR-T Cell Therapy for Pediatric Acute Lymphoblastic Leukemia

Caption: Cancer survivor Emily Whitehead with her dog Lucy.
Credit: Emily Whitehead Foundation

Tremendous progress continues to be made against the Emperor of All Maladies, cancer. One of the most exciting areas of progress involves immunotherapy, a treatment strategy that harnesses the natural ability of the body’s own immune cells to attack and kill tumor cells. A lot of extremely hard work has gone into this research, so I was thrilled to learn that the Food and Drug Administration (FDA) just announced today its first approval of a promising type of immunotherapy called CAR-T cell therapy for kids and young adults with B-cell acute lymphoblastic leukemia (ALL)—the most common childhood cancer in the U.S.

ALL is a cancer of white blood cells called lymphocytes. Its treatment with chemotherapy drugs, developed with NIH support, has transformed ALL’s prognosis in kids from often fatal to largely treatable: about 90 percent of young patients now recover. But for those for whom the treatment fails, the prognosis is grim.

In the spring of 2012, Emily Whitehead of Philipsburg, PA was one such patient. The little girl was deathly ill, and her parents were worried they’d run out of options. That’s when doctors at Children’s Hospital of Pennsylvania, Philadelphia, gave Emily and her parents new hope. Carl June and his team had successfully treated three adults with their version of CAR-T cell therapy, which is grounded in initial basic research supported by NIH [1,2]. Moving forward with additional clinical tests, they treated Emily—their first pediatric patient—that April. For a while, it was touch and go, and Emily almost died.

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: Toben Nelson

Caption: Toben Nelson (back row, far left) celebrates with his Roseville Raiders after winning Gopher State Tournament of Champions.
Caption: Heather Hammond Nelson

What was Toben Nelson, a University of Minnesota epidemiologist who studies the health risks of alcohol abuse and obesity, doing this summer lugging around a heavy equipment bag after work? Giving back to his community. Nelson volunteered as a coach for the Roseville Raiders, a 13-year-old-and-under traveling baseball team that just wrapped up its season by winning the prestigious Gopher State Tournament of Champions in their age group.

In the fall, Nelson will gear up for hoops as the volunteer president of the Roseville Youth Basketball Association, which provides an opportunity for kids in this Minneapolis-St. Paul suburb to take part in organized sports. Nelson says volunteering grounds him as a scientist. It reminds him every single day that his NIH-supported research back at the office affects real lives and benefits real communities like his own.

Nelson is currently studying strategies to prevent alcohol-related injuries and violence. He also works on projects to promote physical activity and prevent childhood obesity. Over the years, he and his colleagues have collected a lot of data on teens and young adults, and they know a tremendous amount about their health status, their behaviors and their risks for excessive drinking or becoming overweight. Still, what’s often missing is a connection to the real faces and unique personalities of young people navigating these formative years.

So Nelson downregulates the keen analytical side of his brain on most evenings around 5:30 p.m.

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

Françoise Baylis and Carolyn McLeod (eds), Family-Making: Contemporary Ethical Challenges, Oxford University Press, 2014

This fascinating anthology focuses on the question of how we make families, and how bionormative assumptions shape or distort our collective thinking about parenting, children’s welfare, and state obligations to parents and children. The editors are primarily interested in the question of whether parents’ moral responsibilities toward children differ for children produced through assistive reproductive technologies (ART) compared to children brought into the family via adoption. As the editors point out, in the realm of ART, most of the philosophical literature has been focused on parental autonomy and rights to assistance in reproducing, while the adoption literature is almost entirely focused on the protection of children. The anthology does an excellent job of exploring this disconnect, and probing assumptions about moral responsibilities within family-making. Taken as a whole, the chapters explore “whether people should rely on others’ reproductive labour in having children, whether they should ensure that they will have a genetic tie to their children or that their children will have some connection to genetic relatives, whether they should bring a new child into the world at all, whether they should agree to what the government would require of them for an adoption, where they should live if the family they make is multi-racial, at what age they should forgo having children, and the list goes on” (6).

The first section of the book sets the stage with two excellent chapters on the goods of parenting (Harry Brighouse and Adam Swift) and the goods of childhood (Samantha Brennan). The goods of parenting are distinguished from other related goodsintimacy with another adult or friend, friendship with a child, being an uncle, having a pet, etc.

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

Rural-Urban Gap in Some Vaccination Rates Leaves Health Officials Puzzled

August 25, 2017

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New data on vaccination rates among U.S. teenagers provide some heartening news — but also pose a bit of a mystery.

The report, from the Centers for Disease Control and Prevention, shows parents of teenagers are in the main following the CDC’s advice and keeping their children up to date on vaccines that should be administered in the early teens.

But the 2016 survey revealed big differences in the rates of teenagers who are vaccinated with some but not all recommended vaccines, depending on whether they live in cities or more rural locations. And that fact is puzzling the CDC scientists who analyzed the data, published Thursday in the CDC journal Morbidity and Mortality Weekly Report.

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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

Will CRISPR fears fade with familiarity?

With all these ‘test tube’ babies grown up, how have our reactions to the technology evolved? AP Photo/Alastair Grant

The first “test-tube baby” made headlines around the world in 1978, setting off intense debate on the ethics of researching human embryos and reproductive technologies. Every breakthrough since then has raised the same questions about “designer babies” and “playing God” – but public response has grown more subdued rather than more engaged as assisted reproductive technologies have become increasingly sophisticated and powerful.

As the science has advanced, doctors are able to perform more complex procedures with better-than-ever success rates. This progress has made in vitro fertilization and associated assisted reproductive technologies relatively commonplace. Over one million babies have been born in the U.S. using IVF since 1985.

And Americans’ acceptance of these technologies has evolved alongside their increased usage, as we’ve gotten used to the idea of physicians manipulating embryos.

But the ethical challenges posed by these procedures remain – and in fact are increasing along with our capabilities. While still a long way from clinical use, the recent news that scientists in Oregon had successfully edited genes in a human embryo brings us one step closer to changing the DNA that we pass along to our descendants. As the state of the science continues to advance, ethical issues need to be addressed before the next big breakthrough.

Birth of the test-tube baby era

Louise Brown was born in the U.K. on July 25, 1978. Known as the first “test-tube baby,” she was a product of IVF, a process where an egg is fertilized by sperm outside of the body before being implanted into the womb.

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.