Tag: cancer

Bioethics News

Widowed Early, A Cancer Doctor Writes About The Harm Of Medical Debt

August 10, 2017

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How she got from there to here is a story about how health care and money are intertwined in ways that doctors and patients don’t like to talk about.

But Chino is determined to do so.

“I think of him every day,” Chino says of her late husband, Andrew Ladd. “It drives me to do the type of research that I do — that’s looking at the financial toxicity of cancer care.”

Chino is co-author of a research letter, published Thursday in JAMA Oncology, that shows that some cancer patients, even with insurance, spend about a third of their household income on out-of-pocket health care costs outside of insurance premiums.

It’s an issue Chino knows well.

… Read More

Image via Flickr AttributionNoncommercialShare Alike Some rights reserved by See-ming Lee 李思明 SML

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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

How Can You Take Part in Clinical Research? Looking Beyond “First in Human”

For a remarkable journey through the front lines of clinical research, I’d like to invite you to join me in viewing First in Human, which premieres tonight at 9 p.m. ET on the Discovery Channel. This three-part docuseries, to be aired August 10, 17, and 24, provides an unprecedented look inside the NIH Clinical Center here in Bethesda, MD, following four of the many brave patients who’ve volunteered to take part in the clinical trials that are so essential to medical breakthroughs.

You’ll learn about what it’s like to take part in an experimental trial of a new treatment, when all standard options have failed. You’ll see that the NIH Clinical Center and its staff are simply amazing. But keep in mind that you don’t have to travel all the way to Bethesda to be part of outstanding, NIH-funded clinical research. In fact, we support clinical trials all across the country, and it’s often possible to find one at a medical institution near your home. To search for a clinical trial that might be right for you or a loved one with a serious medical problem, try going to ClinicalTrials.gov, a web site run by NIH.

According to a national survey conducted a few years ago, 16 percent of respondents reported that they or a family member had participated in a clinical trial [1]. But among adults with cancer, participation in clinical trials is estimated to be only about 3 percent [2].

These numbers need to go up! Not only do clinical trials offer sick people who have no other options a chance to receive experimental treatments that may extend or save their lives, such work is essential for advancing scientific knowledge in ways that will benefit the health of future generations.

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

Right to Try: Why Logic and Facts Won’t Win This One

by Craig Klugman, Ph.D.

Last week the U.S. Senate passed bill S. 204, the Trickett Wendler Right to Try Act of 2017. Trickett Wendler was a woman with ALS. The ALS association and her family lobbied Congress to support this bill to give all patients living with a terminal illness the “right” to purchase experimental drugs from pharmaceutical companies. Essentially, this bypasses the FDA’s compassionate use program. Instead of filing an application for FDA compassionate use (which the FDA approves 99% of the time), the patient asks the drug manufacturer directly. As I have written in this space before, such laws threaten public health efforts through the FDA to ensure safe and efficacious pharmaceuticals.

Currently, 37 states have such right-to-try laws and more have considered them. The push for these laws begins with the Barry Goldwater Institute, a libertarian think-tank, funded in part by the Koch brothers. Last month I had the surreal experience of debating two right-to-try supporters (one from a business school and one from the Goldwater Institute) about these laws which they base in a “right to self-medicate.” There were two of us against self-medication and two in favor of it.  You can read the commentaries and responses of the debaters here.

In this essay, I do not plan to restate my arguments against right-to-try. You can read my thoughts on this policy here and here. Instead, this post will examine the tools of argumentation that my opponents employed in the debate. It is important to show their debate techniques so that we all have a better understanding of how to analyze claims to support right-to-try and to realize why better facts and better arguments are falling on deaf ears.

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 Opioid Epidemic is an Epidemic of Stigma

Kristie Serota and Daniel Z. Buchman argue that eradicating the stigma associated with opioid use is an ethical necessity and is critical for population health.

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The Government of Canada reports that over 2458 Canadians died of apparent opioid-related deaths in 2016 (excluding Quebec). Last November, an average of 4 people died from overdoses every day in British Columbia. Recent U.S. estimates project opioid-related deaths at over half-a-million people over the next decade. Interventions have been implemented in many jurisdictions to minimize opioid-related mortality, but each year the death toll continues to rise and shows no signs of relenting.

While people dying from opioids in large numbers is not new, the present epidemic arose due to several complex factors. For example, OxyContin was aggressively marketed and prescribed for chronic non-cancer pain. Doctors and the public were misled about OxyContin’s addiction risks. In addition, health professionals receive limited training on pain and addiction. There are also inequities due to the social determinants of health and the harmful effects of substance use-related stigmas.

Stigma, operating at individual, institutional, and social levels, has led to punitive legal, policy, and clinical responses toward people who use drugs. Stigma has also led to chronic underfunding of addiction research and treatment services relative to the burden of disease. Although the current epidemic does not discriminate across the social gradient, stigma disproportionately burdens people from less privileged social groups more frequently and harmfully than others. People with no history of a substance use disorder risk the pejorative label of ‘addicts’ when they are prescribed opioids for pain management.

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: The Entire History of You

By Somnath Das
Somnath Das recently graduated from Emory University where he majored in Neuroscience and Chemistry. He will be attending medical school at Thomas Jefferson University starting in the Fall of 2017. The son of two Indian immigrants, he developed an interest in healthcare after observing how his extended family sought help from India’s healthcare system to seek relief from chronic illnesses. Somnath’s interest in medicine currently focuses on understanding the social construction of health and healthcare delivery. Studying Neuroethics has allowed him to combine his love for neuroscience, his interest in medicine, and his wish to help others into a multidisciplinary, rewarding practice of scholarship which to this day enriches how he views both developing neurotechnologies and the world around him. 
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 may be lurking behind our 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 will 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.

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

American CRISPR Experiments and the Future of Regulation

By Michael S. Dauber, MA, GBI Visiting Scholar

According to a report in The MIT Technology Review, researchers in a lab based in Portland, Oregon have successfully created genetically modified human embryos for the first time in U.S. history, using a technique called CRISPR. The project, directed by Shoukhrat Mitalipov, a researcher at Oregon Health and Science University, was published in Nature, and consisted of modifying the genes of human embryos to prevent a severe, genetically inherited heart condition. The embryos were destroyed several days after the experiments.

CRISPR stands for “clustered, regularly interspaced, short palindromic repeats.” It is a genetic editing technique that allows scientists to cut out pieces of DNA and replace them with other pieces. CRISPR originated as a naturally occurring cellular defense system in certain bacterial that allows a cell to defend itself from foreign genetic material injected into cells by viruses. RNA strands that match the problematic genes bind with the piece of DNA to be removed, and enzymes work to remove the defective material. When CRISPR is used to edit the human genome, scientists apply CRISPR RNA strands and the corresponding enzymes that match the genes they wish to edit in order to extract the problematic genes.

Mitalipov is not the first scientist to use CRISPR to edit the human genome. Scientists in China have been using the technique in research using human embryos dating back to 2015. One notable study consisted of attempts to make cells resistant to HIV. Another controversial study involved the injection of CRISPR-modified cells into a patient with advanced lung cancer.

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

You’ll Want to See This! “First in Human” Debuts August 10

For over 60 years, the NIH Clinical Center—the world’s largest hospital dedicated to clinical research—has been at the forefront of developing treatments for our most deadly and damaging diseases. It’s here at our “House of Hope” in Bethesda, MD, where, among many other medical firsts, chemotherapy was first used to treat cancerous tumors, gene therapy underwent its first human tests, surgeons first successfully replaced the heart’s mitral valve, and the first anti-viral drug for HIV/AIDS met with early success.

Now, in a Discovery Channel documentary called First in Human, millions of people all around the globe will get a chance to see the doctors, nurses, and other staff of NIH’s remarkable research hospital in action. Narrated by Big Bang Theory star Jim Parsons, the three-part series debuts at 9 p.m.-11 p.m., ET, Thursday, August 10. The second and third segments will air at the same time on August 17 and 24. For a sneak peak, check out the video clip above!

Filmed in the Clinical Center between September 2015 and June 2016, First in Human follows four seriously ill patients—two with cancer and two with rare, inherited diseases—as they take part in clinical trials of experimental therapies. By volunteering for such research with no guarantee that they themselves would benefit, these four brave individuals helped to build the foundation for tomorrow’s breakthroughs. When you consider all of the medical “firsts” made possible by clinical research, it’s clear that we owe an enormous debt of gratitude not only to these patients, but to everyone who participates in clinical studies at the Clinical Center and across the nation.

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: Diane Baker

Caption: My wife Diane inspired me and my staff to volunteer to make dinner for patients and their families at The Children’s Inn at NIH.
Credit: NIH Record

My blog usually celebrates biomedical advances made possible by NIH-supported research. But every August, I like to try something different and highlight an aspect of the scientific world that might not make headlines. This year, I’d like to take a moment to pay tribute to just a few of the many NIH family members around the country who, without pay or fanfare, freely give of themselves to make a difference in their communities.

I’d like to start by recognizing my wife Diane Baker, a genetic counselor who has always found time during her busy career to volunteer. When I was first being considered as NIH director, we had lots of kitchen table discussions about what it might mean for us as a couple. We decided to approach the position as a partnership. Diane immediately embraced the NIH community and, true to her giving spirit, now contributes to some wonderful charities that lend a welcome hand to patients and their loved ones who come to the NIH Clinical Center here in Bethesda, MD.

As a genetic counselor, Diane spent many years working with pediatric patients and their families at the University of Michigan, Ann Arbor. Now she puts this real-world experience to great use as a board member for the Friends of Patients at the NIH. This dedicated group provides a support system for patients participating in an NIH clinical trial and their families.

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 Scariest Part of Genetic Testing?

July 31, 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.”

Thousands of people have had their BRCA genes tested for increased genetic susceptibility to breast, ovarian, prostate and other cancers. About 5% have learned that they carry a VUS. That number is even higher for other genes: in one study, almost 20% of genetic tests returned a VUS result.

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 tissues and organs produced using 3D techniques

In recent years, many efforts have been made by scientists and biomedical engineers to develop ex-vivo models of human tissues and organs using 3D printing techniques (see our report HERE) for various purposes. In particular, the potential organoids using 3D techniques can be used to assess the functions of different human organs, deepen our understanding of various diseases, and also serve as a substrate for experimentation with new drugs. Now, a webinar in Nature (nature.com webcasts) has evaluated the possibility of detecting specific drugs for the treatment of malignant tumors, especially colorectal tumors. Using this technique, they evaluated more than 3000 molecular compounds that have been identified and validated to prevent the recurrence of colorectal cancer, which, from a medical and bioethical point of view, is very positive.

La entrada Human tissues and organs produced using 3D techniques aparece primero en Bioethics Observatory.

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.