Tag: researchers

Bioethics Blogs

How paranoid should I be about my personal health care data privacy?

A recent Wall Street Journal article by Twila Brase suggests that anonymous medical data may not be so anonymous. This piqued my paranoia antenna. Her concern focuses on the new 21st Century Cures Act, which not only significantly increased funding for cancer research and opioid treatment programs, but also created “an ‘information commons’: a government-regulated pool of data accessible to all health researchers, regardless 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

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

The Neuroethics Blog Series on Black Mirror: White Bear

By Kristie Garza
Image courtesy of  Wikimedia Commons.

Humans in the 21st century have an intimate relationship with technology. Much of our lives are spent being informed and entertained by screens. Technological advancements in science and medicine have helped and healed in ways we previously couldn’t dream of. But what unanticipated consequences of the rapid expansion into new technological territory? This question is continually being explored in the British sci-fi TV series Black Mirror, which provides a glimpse into the not-so-distant future and warns us to be mindful of how we treat our technology and how it can affect us in return. This piece is part of a series of posts that discuss ethical issues surrounding neuro-technologies featured in the show and will compare how similar technologies are impacting us in the real world. 



*SPOILER ALERT* – The following contains plot spoilers for the Netflix television series Black Mirror. 

Plot Summary


“White Bear” begins with Victoria, the episode’s main character, awakening in an unfamiliar room in front of a TV displaying an unfamiliar symbol. She has no memory of who she is or how she wound up in the room.
Afraid, Victoria begins to explore her outside surroundings, where she finds “onlookers,” individuals in a trance-like state, filming her with their phones. A masked man then appears and begins chasing Victoria. While fleeing, she meets Jem, a fellow individual not under the trance. Jem explains to Victoria that the onlookers were put in their trance due to the strange symbol on the screens and that the masked man is a “hunter,” part of an evil people not affected by the strange symbol.

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

Human genetic architecture, mapped for the first time, shows objective sexual differences

Men and women is not just a social construct as affirm gender ideology. This work provides evidences of the sex-differential transcriptome and its importance to human entire body and physiology. Around 6,500 genes with activity that was biased toward one sex or the other in at least one tissue.

Shmuel Pietrokovski and Moran Gershoni, both researchers in the Molecular Genetics Department at the Weizmann Institute of Sciences, have revealed that close to 6,500 protein-coding human genes react differently in males and females (BMC, 6 – 1 – 2017, see HERE).

This finding is contrary to gender ideology, which considers that the difference between men and women is a social and/or cultural fact, i.e., a construct, rather than something biological or natural (see HERE). In a recent article, the scientists said that, in order identify the thousands of genes, they turned to the GTex project, a very large study of human gene expression in which numerous organs and tissues of the body had been examined in more than 550550 adult donors

Human sex genetic architecture differences were mapped

According to the authors, “that project enabled, for the first time, the comprehensive mapping of the human sex-differential genetic architecture”.

The researchers examined close to 20,000 protein-coding genes, classifying them by sex and searching for differences in expression in each tissue.

The eventually identified “around 6,500 genes with activity that was biased toward one sex or the other in at least one tissue”.

In the same manner, many genes that are associated with sexually dimorphic traits might undergo differential selection, which will likely impact reproduction, evolution, and even speciation events.

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

Offshore Herpes Vaccine Trial Under Investigation

September 1, 2017

Be the first to like.
Share

The government of St. Kitts and Nevis has launched an investigation into the clinical trial for a herpes vaccine by an American company because it said its officials were not notified about the experiments.

The vaccine research has sparked controversy because the lead investigator, a professor with Southern Illinois University, and the U.S. company he co-founded did not rely on traditional U.S. safety oversight while testing the vaccine last year on mostly American participants on the Caribbean island of St. Kitts.

The trial received financial backing from a former Hollywood filmmaker who has asserted the vaccine was highly successful in stopping herpes outbreaks. Since then, a group of investors, including Donald Trump supporter Peter Thiel, have backed the ongoing vaccine research with a $7 million investment that could include additional clinical trials in Mexico and Australia.

Neither the Food and Drug Administration nor a safety panel known as an institutional review board, or an “IRB,” monitored the testing on the 20 human subjects. Now, the government of St. Kitts and Nevis says that the researchers also did not officially seek permission to test the vaccine, which took place from April to August 2016.

Be the first to like.
Share

Scientific American

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

Medicaid Fueling Opioid Epidemic? New Theory Is Challenged

September 1, 2017

Be the first to like.
Share

WASHINGTON — An intriguing new theory is gaining traction among conservative foes of the Obama-era health law: Its Medicaid expansion to low-income adults may be fueling the opioid epidemic.

If true, that would represent a shocking outcome for the Affordable Care Act. But there’s no evidence to suggest that’s happening, say university researchers who study the drug problem and are puzzled by such claims. Some even say Medicaid may be helping mitigate the consequences of the epidemic.

Circulating in conservative media, the Medicaid theory is bolstered by a private analysis produced by the Health and Human Services Department for Sen. Ron Johnson, R-Wis. The analysis says the overdose death rate rose nearly twice as much in states that expanded Medicaid compared with states that didn’t.

Independent experts say the analysis misses some crucial facts and skips standard steps that researchers use to rule out coincidences.

Be the first to like.
Share

The New York Times

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

Second International Conference on End of Life Law, Ethics, Policy, and Practice

There is less than two weeks until the Second International Conference on End of Life Law, Ethics, Policy, and Practice.  

This is a truly worldwide meeting of leading end-of-life policy and ethics academics and researchers in Halifax, Nova …

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

The FDA Approves a Landmark Cancer Drug

Be the first to like.
Share

The Food and Drug Administration on Wednesday approved a new therapy to treat leukemia in kids and young adults—a decision whose importance is as much symbolic as it is practical.

Kymriah, from the Swiss pharmaceutical company Novartis, is a cancer therapy that represents several things at once: a game-changing way to treat cancer through genetic engineering, a novel paradigm for the biotech business, and the latest turn in the debate over just how astronomically expensive a life-saving therapy can be.

Kymriah is strikingly effective for young patients with acute lymphoblastic leukemia, or ALL, but it is far more involved than taking a pill or getting an infusion. It requires inserting a human-designed gene into a patient’s own T cells so they recognize and ferociously attack cancer cells. Researchers began modifying T cells for patients in the 1990s—and now the technology called CAR T-cell therapy is finally ready for prime time in treating cancer.

Of several dozen ALL patients in a clinical trial for Kymriah, 83 percent were cancer-free after three months. It is a lifeline for patients in which traditional treatments like chemotherapy and bone-marrow transplants had failed. When the FDA’s advisory committee initially voted in favor of approving Kymriah, one member called it “the most exciting thing I’ve seen in my lifetime” for childhood leukemia. Novartis is hardly the only company interested in CAR T. Kymriah is the first approved therapy, but several clinical trials—mostly notably Kite Pharma’s for lymphoma—are right behind it.

(To clear up any possible confusion about terminology: The FDA and others have chosen to call CAR T-cell therapy a form of gene therapy—and thus deemed it the first gene therapy to be approved in the United States.

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.