Tag: cancer

Bioethics News

What I Learned From Home DNA Testing

July 25, 2017

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There may come a time in everyone’s life when they find themselves sitting at the kitchen table on an otherwise unexceptional weekday morning, drooling saliva into a test tube in the spirit of scientific inquiry.

The spit is for one of the home genetic-testing kits I’m sampling. A growing number of these kits (brands such as 23andMe, DNAFit, Thriva, MyHeritage DNA, and Orig3n) promise to unlock the mystery of your genomes, variously explaining everything from ancestry, residual Neanderthal variants, “bioinformatics” for fitness, weight loss and skincare, to more random genetic predispositions, denoting, say, the dimensions of your earlobes or the consistency of your earwax.

More controversially, some of these kits profess to tell you your biological (as opposed to actual age) by measuring the length of your telomeres (in basic terms, the caps at the end of each strand of DNA that protect chromosomes, like plastic tips at the end of shoelaces). Other tests, such as 23andMe, predict higher risks of developing serious conditions, such as multiple sclerosis, Alzheimer’s and Parkinson’s, including the test for BRCA1/BRCA2 (breast and ovarian cancer) that Angelina Jolie famously underwent, going on to have a preventative double mastectomy and surgery to remove her ovaries.

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The Guardian

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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

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.

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

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NYTimes

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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

Choosing to Die – Phyllis Shacter on VSED

Check out this broadcast on Wednesday July 26 on Good Grief with Cheryl Jones.


Phyllis Shacter’s husband made a series of radical choices about how his life would end. When he received two life limiting diagnoses within six weeks of each other, Alzheimers and cancer, he refused cancer treatment and employed natural methods instead. He planned and participated in his own funeral and followed what he believed was best for him, choosing to stop eating and drinking before he was unable to consciously decide how his life would end.


Throughout all of these experiences and decisions, he had a supporter and advocate in his wife Phyllis. Understanding the choices he was making, she stood as a pillar to his right to end life in the way that was right for him. He left her with a mission; by sharing his story, she would contribute to the conversation on end of life options. Powered by her love of him and the peace and beauty he felt at the end of his life, she speaks powerfully for taking our lives in our own hands and fully exploring what is best for each of us.

Source: bioethics.net, a blog maintained by the editorial staff of The American Journal 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

Wong v. Glendale Adventist – Family Alleges Clinicians Deceived Them into Following Advance Directive

An interesting appeal is being briefed before the California Court of Appeal second district.


In 2011, Cecilia Hoh entered Glendale Adventist Medical Center complaining of a swollen foot. Plaintiff family members allege that they authorized the withdrawal of treatment, because GAMC falsely told them that Hoh had fatal lung cancer.


The plaintiffs alleged that they responsibly followed Hoh’s advance directive which stated “If I should have an incurable and irreversible condition that has been diagnosed by two physicians and that will result in my death within a relatively short time . . . I direct my attending physician . . . to withhold or withdraw treatment . . . .”


The lawsuit alleges that a false diagnosis caused them to make a bad decision. Since Hoh’s condition was neither incurable nor irreversible, her advance directive was not relevant.

An interesting appeal is being briefed before the California Court of Appeal second district.


In 2011, Cecilia Hoh entered Glendale Adventist Medical Center complaining of a swollen foot. Plaintiff family members allege that they authorized the withdrawal of treatment, because GAMC falsely told them that Hoh had fatal lung cancer.


The plaintiffs alleged that they responsibly followed Hoh’s advance directive which stated “If I should have an incurable and irreversible condition that has been diagnosed by two physicians and that will result in my death within a relatively short time . . . I direct my attending physician . . . to withhold or withdraw treatment . . . .”


The lawsuit alleges that a false diagnosis caused them to make a bad decision.

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.

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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

How To Make Sure We All Benefit When Nonprofits Patent Techonologies Like CRISPR

July 19, 2017

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Or when potentially lifesaving inventions are priced so high that access is limited? The public partially underwrites nonprofit discoveries via tax breaks and isn’t seeing a lot of benefit in return.

Questions like these arose recently in the case of CRISPR, the promising new gene-editing technology. After patenting it, the Broad Institute of MIT and Harvard sold the exclusive right to develop CRISPR-based therapies to its sister company Editas Medicine. Critics worry that this monopoly could limit important research and result in exorbitant prices on emerging treatments.

We’ve seen this situation before: For example, Xtandi, a prostate cancer drug developed and patented by researchers at the University of California-Los Angeles, now costs US$129,000 for a course of treatment.

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Image: Peter Vanderwarker, CC BY

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The Conversation

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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.”

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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

With Cancer Screening, Better Safe Than Sorry?

Few may realize that ill-advised screening tests come at a price, and not just a monetary one that adds many billions to the nation’s health care bill. Every screening test has a rate of false positive results – misleading indications of a possible cancer that requires additional, usually invasive, testing with its own rate of complications

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

Walk In or Get Out: Overcoming Distrust of Medicine to Improve Outcomes

by Jennifer Cohen                                         

“Get Out” Universal 2017    

“Get Out” Universal 2017    

“Get Out” Universal 2017    

“Frankenstein” Universal 1931

“Frankenstein” Universal 1931

“Frankenstein” Universal 1931

Popular culture has long provided an outlet for feelings of powerlessness toward medicine. 19th century novels Frankenstein and The Island of Dr. Moreau tapped into fears that medicine would cruelly pursue scientific knowledge at the expense of human life. Two recent films, The Immortal Life of Henrietta Lacks and Get Out, examine the anxieties and mistrust that African Americans, in particular, experience toward the medical community in the modern era.  

Henrietta Lacks depicts a historical breach of ethics by researchers at Johns Hopkins University, whose work obscured the identity of Ms. Lacks’ “immortal” cell line and withheld attribution both to Ms. Lacks and her family for decades. In the film, this wrong exacerbates over time as the family struggles emotionally to understand the uses of their mother’s cells and to accept their mother’s consent was never considered necessary. Indeed, the family believed that members of their community were routinely used for experimentation without their consent: they tell journalist Rebecaa Skloot that, as children, they were warned by their parents to get off the streets at night or “Hopkins people” would snatch them up.

In Get Out, a nightmarish surgical practice occurs in which a neurosurgeon and psychiatrist lure African Americans to their home for use as receptacles for white brains in a bid for white immortality. Both of these films explore the premise that African-Americans should be afraid medicine will treat them differently from white individuals.

The ugly history of abuse toward African Americans in the name of medical research was extensively documented in 2006 by the bioethicist Harriet A.

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.