Tag: blood

Bioethics Blogs

‘A bit of a compromise’: Coming to terms with an emergency caesarean section by Terena Koster

During the midwife-hosted antenatal class Cath attended in a private hospital in Cape Town, South Africa, where she would eventually give birth, pregnant women were encouraged to name the kind of birth they wanted. They were presented with three options: “natural all the way with no medication”, “natural but open to medication”, or “elective caesarean”. The ‘choice’ women were expected to make featured as an important point of concern in their antenatal care and in their preparations for birth.

Hannah, a participant in the class, recalls a particularly striking moment when the midwife went around the room and pointed at each of the participants and asked, “Who is your gynae”. She went on to predict diverse birth outcomes, irrespective of participants’ stated intentions to birth vaginally. For Hannah this was an “eye opening” experience. A first time mother, she was now invited into a highly politicised birthing environment. Hannah had been uncertain about what kind of birth she wanted, but at 8 months pregnant she had decided on a ‘natural’ birth as opposed to a ‘caesarean’, with the caveat that in the event that an emergency caesarean section was a likely outcome, she would proactively opt for an elective caesarean.

At 39 weeks and near the end of her pregnancy, she found herself sitting opposite her obstetrician who told her there was “a real threat of the umbilical cord wrapping around [the baby’s] neck as she … drop[s] down,” adding that because the baby was “so big” there was “a high likelihood of [Hannah] tearing”. For the first time, the obstetrician instructed her to make a birthing decision: to continue trying for a vaginal birth or to opt for an elective caesarean section.

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

Companies Rush to Develop ‘Utterly Transformative’ Gene Therapies

July 24, 2017

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Companies and universities are racing to develop these new therapies, which re-engineer and turbocharge millions of a patient’s own immune cells, turning them into cancer killers that researchers call a “living drug.” One of the big goals now is to get them to work for many other cancers, including those of the breast, prostate, ovary, lung and pancreas.

“This has been utterly transformative in blood cancers,” said Dr. Stephan Grupp, director of the cancer immunotherapy program at the Children’s Hospital of Philadelphia, a professor of pediatrics at the University of Pennsylvania and a leader of major studies. “If it can start to work in solid tumors, it will be utterly transformative for the whole field.”

But it will take time to find that out, he said, at least five years.

… Read More

Image: By NIAID/NIH – NIAID Flickr’s photostream, Public Domain, https://commons.wikimedia.org/w/index.php?curid=18233598

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Source: Bioethics Bulletin by the Berman Institute of Bioethics.

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

Recent findings. Children conceived through assisted reproduction, now adolescents, have more medical problems

These recent findings should be taken into consideration when making an ethical assessment of assisted reproduction.

An issue that often arises is whether children conceived through assisted reproductive technique – ART (see HERE) present more medical and/or mental health problems when they reach adolescence than those conceived naturally. A recent study (see Abstract) that evaluated the development of 253 adolescents conceived using assisted reproductive techniques compared to a similar group of adolescents conceived naturally found that “no differences were detected in general and mental health of ART adolescents or cognitive ability, compared with the reference group.” However, “follow-up […] revealed that male ART adolescents had significantly more doctor’s appointments compared with the reference group.” Nonetheless, the authors point out that further studies with larger cohorts are needed to confirm these results.

Findings detect a higher risk of cardiovascular disease and higher blood pressure

In a second study, also published in Fertility and Sterility, more metabolic and cardiovascular disorders were detected in children conceived by ART. This systematic review and meta-analysis examined 19 studies that included 2,112 ART-conceived and 4,096 naturally-conceived children, who were followed to adulthood. It found that the blood pressure of those conceived by ART was statistically higher than those conceived naturally. Furthermore, the cardiac diastolic function was suboptimal and blood vessel thickness was higher.

Conclusion

The authors conclude that their findings suggest a higher risk of cardiovascular disease in children conceived by ART, which calls for further research to be able to corroborate these data.

There is no doubt that these findings should be taken into consideration when making an ethical assessment of assisted reproduction.

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

Another Milestone in the Cystic Fibrosis Journey

Caption: Two-year-old Avalyn is among the cystic fibrosis patients who may be helped by targeted drugs.
Credit: Brittany Mahoney

As NIH Director, I often hear stories of how people with serious diseases—from arthritis to Zika infection—are benefitting from the transformational power of NIH’s investments in basic science. Today, I’d like to share one such advance that I find particularly exciting: news that a combination of three molecularly targeted drugs may finally make it possible to treat the vast majority of patients with cystic fibrosis (CF), our nation’s most common genetic disease.

First, a bit of history! The first genetic mutation that causes CF was discovered by a collaborative effort between my own research lab at the University of Michigan, Ann Arbor, and colleagues at the Hospital for Sick Children in Toronto—more than 25 years ago [1]. Years of hard work, supported by the National Institutes of Health and the Cystic Fibrosis Foundation, painstakingly worked out the normal function of the protein that is altered in CF, called the cystic fibrosis transmembrane regulator (CFTR). Very recently new technologies, such as cryo-EM, have given researchers the ability to map the exact structure of the protein involved in CF.

Among the tens of thousands of CF patients who stand to benefit from the next generation of targeted drugs is little Avalyn Mahoney of Cardiff by the Sea, CA. Just a few decades ago, a kid like Avalyn—who just turned 2 last month—probably wouldn’t have made it beyond her teens. But today the outlook is far brighter for her and so many others, thanks to recent advances that build upon NIH-supported basic research.

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

Latinos Left Out Of Clinical Trials … And Possible Cures

July 19, 2017

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Two decades ago, Luis Antonio Cabrera received devastating news: He likely had only three months to live.

The Puerto Rican truck driver, then 50, had attributed his growing leg pain to spending so many hours on the road. The real culprit was a malignant tumor in his left kidney that was pressing on nerves from his lower spine.

His initial treatment involved removing the organ, a complex surgery that, by itself, proved insufficient, as the cancerous cells had already spread to his lungs. Therefore, his primary care physician in Puerto Rico contacted doctors at the National Institutes of Health (NIH), in Bethesda, Md., and managed to enroll Cabrera in a medical study to test an innovative therapy: transplanting blood stem cells to destroy the cancer cells.

Today, at 70, Cabrera, a father of five and grandparent who moved to West Virginia with his wife to be closer to NIH, feels strong and healthy. “I come to do tests every six months — I’m like a patient at large,” he said.

… Read More

Image: Paula Andalo/KHN

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KHN

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Source: Bioethics Bulletin by the Berman Institute of Bioethics.

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 Uncertain Future of Genetic Testing

July 18, 2017

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AnneMarie Ciccarella, a fast-talking 57-year-old brunette with a more than a hint of a New York accent, thought she knew a lot about breast cancer. Her mother was diagnosed with the disease in 1987, and several other female relatives also developed it. When doctors found a suspicious lump in one of her breasts that turned out to be cancer, she immediately sought out testing to look for mutations in the two BRCA genes, which between them account for around 20 per cent of families with a strong history of breast cancer.

Ciccarella assumed her results would be positive. They weren’t. Instead, they identified only what’s known as a variant of unknown or uncertain significance (VUS) in both BRCA1 and BRCA2. Unlike pathogenic mutations that are known to cause disease or benign ones that don’t, these genetic variations just aren’t understood enough to know if they are involved or not.

“I thought you could have a mutated gene or not, and with all the cancer in my family, I believed I would carry a mutation. I didn’t know there was this huge third category,” she says. “I got no information – it felt like a huge waste of blood to get a giant question mark.”

… Read More

Image: © Catherine Losing

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Mosaic

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Source: Bioethics Bulletin by the Berman Institute of Bioethics.

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

Speculation, Certainty and the Diagnostic Illusory: The Tricorder and the Deathless Man by Thierry Jutel

In the paragraphs which follow, we will be discussing the ways in which two pieces of speculative fiction, the science fiction film Star Trek IV: The Voyage Home, and the novel The Tiger’s Wife use diagnostic and prognostic certainty as part of their creative narratives. In both cases, the confidence vested in the diagnosis and its outcome is contrasted to the “diagnostic illusory” of contemporary medicine.

Even while diagnosis is medicine’s primary classification tool, it is far less circumscribed than diagnostic taxonomies suggest, as well as the power afforded those who diagnose. Even very material conditions have porous boundaries (Jutel 2013) which muddy the waters in a system that is based on tidy categories. Sarah Nettleton and her colleagues have developed the term “diagnostic illusory” to describe how medicine invests in generalisation as a way of understanding disease. In the diagnostic illusory, for the cases that resists classification, or perturb a diagnostic category, one turns to ever-more sophisticated forms of technology, with the belief that it’s just a matter of time before the explanation will become clear, and the diagnosis justified. Nettleton and her colleagues raise the idea of “illusory” to highlight the “ambiguities and nuanced complexities associated with the biomedical imperative to name and classify” (Nettleton, Kitzinger, and Kitzinger 2014).

In this short essay, we will explore how two speculative texts represent diagnosis, highlighting through their respectively futuristic and supernatural approaches the yearnings of contemporary medicine, and the society it serves, for diagnostic certainty.

 

Star Trek IV: The Voyage Home and the Tricorder

In the science fiction epic Star Trek IV: The Voyage Home (Nimoy 1986), the Starship Enterprise and its crew have come back to planet earth in 1986 to save the humpback whale from extinction and by extension, to save planet earth from destruction in the future.

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

Charlie Gard, the sick baby hospital doctors want to disconnect. Our medical and ethical assessement

He and his parents await the Judge’s decision regarding the possibility of withdrawing or not the life support who keep him alive and the possibility of receiving an experimental treatment in the United States

Medical aspects

Charlie was born on 4 August 2016. In October the same year, he was admitted to Great Osmond Street Hospital (GOSH-NHS) in London, and diagnosed with a disease that affects mitochondrial function, called mitochondrial DNA depletion syndrome (MDDS). This means that he cannot obtain sufficient energy for his muscles, kidneys, brain and other organs, which causes progressive muscle weakness and brain damage.

Although there seemed to be no specific treatment for the mitochondrial abnormality at that time, in January 2017, his mother became aware of an experimental treatment using nucleosides that was being evaluated in the United States in patients with a disease similar to Charlie’s. Consequently, his parents assessed the possibility of taking him to the US for treatment because, according to them, it might improve their son’s health by at least 10%.

At the same time, British newspaper “The Guardian” announced that the US Hospital that had the medication offered to ship it so that Charlie could be treated immediately, but GOSH (NHS hospital) disagreed, proposing instead to withdraw the child’s respiratory support.

In effect, New York-Presbyterian Hospital and Irving Medical Center, also in New York, published a statement saying that they were willing to admit and clinically evaluate Charlie, as they had FDA approval for the use of an experimental treatment using nucleosides.

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

Burke and Wills: Why We Might All Fear the Judgment in Charlie Gard

The Case of Donald Wills

Donald Wills is a self-made man. He is billionaire British banker who has taken an interest in technology. He believes the Singularity is near and wishes to live as long as possible. He completes an advance directive to use his money to keep him alive at all costs, should he become ill and unable to express his wishes. He tells his wife about these desires.

Donald develops a rare condition where the mitochondria in all his cells stop working. The mitochondria are power packs for every cell. Donald’s muscles stop working and he is admitted to a famous London hospital and has to be put on a breathing machine. His brain is affected- he suffers fits which need to be controlled by medication. There is no known cure and he is going downhill.

Doctors call in his wife and explain his dismal prognosis. “It is,” they say, “in his best interests to stop this burdensome treatment in intensive care. He will never regain normal brain function but he is conscious at times and feels pain. He should be allowed to die with dignity.” After all, Donald is 75.

Donald’s wife, Melanie, is shattered. But she goes on the internet to see if anything can be done. She knows this is what Donald would want. She finds a world expert at a world class centre in Boston who has trialled a new treatment, X, on ten patients and has obtained significant results in one of them. She calls the expert and he tells her there is some chance of some improvement in her husband but it is low.

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

How should we organize consent to research biobanking in the hospital?

By Alena Buyx, MD PhD Ever wondered what happens to the biological material you leave behind when you check out of the hospital? Nothing much, is the usual answer. However, the little bits of blood, tissue, and urine are potentially valuable … Continue reading

Source: Bill of Health, examining the intersection of law and health care, biotech & bioethics.

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.