Tag: review

Bioethics News

Doctors Plan Bold Test of Gene Therapy on Boys with Muscular Dystrophy

August 17, 2017

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In 1990, a British muscular dystrophy researcher, Kay Davies, described the unusual case of a 61-year-old man who by rights should not have been alive, based on what was known of the disease at that time.

The muscle wasting disease is caused by mutations to the dystrophin gene. Even just one wrong genetic letter can mean early death. Remarkably, the man Davies described was missing 46 percent of the gene. Yet there he was, still walking with the aid of a stick in his seventh decade.

Now that 27-year-old discovery is leading to what could be the best chance to treat—and maybe stop—a serious form of the disease, Duchenne muscular dystrophy.

… Read More

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MIT Technology Review

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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

Quinlan at 40: Exploring the Right to Die in the U.S.

In November 2016, the Georgia State University College of Law hosted a symposium: “Quinlan at 40: Exploring the Right to Die in the U.S.”


Four published articles from this symposium are now available from the law review’s website.


Distinctive Factors Affecting the Legal Context of End-Of-Life Medical Care For Older Persons
Marshall B. Kapp


Ending-Life Decisions: Some Disability Perspectives
Mary Crossley


Unbefriended And Unrepresented: Better Medical Decision Making For Incapacitated Patients Without Healthcare Surrogates
Thaddeus Mason Pope


2016-2017 Georgia State University Law Review Symposium: Exploring the Right To Die In The U.S.
Margaret Pabst Battin

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

Unbefriended and Unrepresented: Better Medical Decision Making for Incapacitated Patients without Healthcare Surrogates

The Georgia State University Law Review has posted a PDF of my new 98-page article, “Unbefriended and Unrepresented: Better Medical Decision Making For Incapacitated Patients Without Healthcare Surrogates.”


The purpose of this Article is to help improve the quality of healthcare decision making for the unbefriended. I hope that this comprehensive and systematic explanation of both the problem and the available solutions will empower both public and clinical policymakers to develop more informed and more circumspect policies and procedures.

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 News

Review of countries where Euthanasia has been legalised. Increaing of involuntary euthanasia, without consent by patients

Euthanasia a Slippery slope that could end in involuntary euthanasia

Euthanasia was legalised in Belgium in 2002, where is defined as “the intentional termination of a patient’s life by a physician at the patient’s request”, so that only voluntary euthanasia may be legally carried out in Belgium (J Med Ethics 41; 625-629, 2015). However, this legal requirement of voluntarism is not always fulfilled.

Thus, a study conducted in Flanders in 1996 found that 3.3% of cases of euthanasia had occurred without the prior request of the patient. In other words, they were involuntary euthanasias. Another study (also in Flanders) found that there had been 1796 cases of involuntary euthanasias (3.2%). A more recent study from 2007 found that the percentage of involuntary euthanasia was 1.8%, while another in 2013 found 1.7%.

However — and we believe this is important — the percentage of involuntary euthanasia in patients who were 80-years-old or over rose to 52.7%, while in those with diseases other than cancer, this figure reached 67.5%. The decision was not discussed with the patient in 77.9% of cases (J Med Ethics 41; 625-629, 2015).

Canada experience

A Recent statement of Professor Somerville, who spent 40 years living and working in Canada,  has recently returned home to Australia to take up the position of Professor of Bioethics in the School of Medicine at The University of Notre Dame Australia, Sydney where she says claims by Australian pro-euthanasia advocates, including media personality Andrew Denton, that euthanasia and assisted suicide is working safely overseas don’t stand up to basic scrutiny.

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

Housing Equity Week in Review

Here is our weekly round-up of developments from the world of housing law and health. For the week of August 7-14, 2017: HUD released its “Worst Case Housing Needs” report to Congress providing national data and analysis of the problems … 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.

Bioethics News

Drugs that Go Through FDA’s Expedited Review Might Be Better Drugs

August 14, 2017

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A new paper in the latest issue of Health Affairs is worth a look. “Drugs Cleared Through The FDA’s Expedited Review Offer Greater Gains Than Drugs Approved By Conventional Process“:

We investigated whether drugs approved by the Food and Drug Administration (FDA) through expedited review have offered larger health gains, compared to drugs approved through conventional review processes. We identified published estimates of additional health gains (measured in quality-adjusted life-years, or QALYs) associated with drugs approved in the period 1999–2012 through expedited (seventy-six drugs) versus conventional (fifty-nine) review processes.

The FDA has a strict process for drug approval, requiring a number of phases of testing to establish safety and efficacy. It can, however, expedite this process when it thinks a drug may address an unmet clinical need. Of course, you want such a process to be fair and work. You want it to be focused on “better” and “more important” drugs. The 21st Century Cures Act moved even further. Some worry that loosening standards will lead to increased exposure to harm, especially if there isn’t proof that these drugs provide more benefits.

… Read More

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The Incidental Economist

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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

Call for Papers: Health and Food Ethics

August 14, 2017

October 2018

Health and Food Ethics

Hippocrates once said, “Let food be thy medicine and medicine be thy food.” Physicians in some U.S. cities have followed this advice by writing prescriptions for patients to obtain fresh produce through healthy food outreach programs. Clinical encounters, however, cannot fully reverse the negative health effects of low quality diets. Further, millions remain hungry as the quantity of the global food supply is at risk. Providing safe, nutritious, and environmentally- sustainable food to all is a great challenge, and if the global community cannot find solutions to feed the world, economic and social costs will be high. “Ending hunger, achieving food security, improving nutrition, and promoting sustainable agriculture” is one of the Sustainable Development Goals set forth by the United Nations. As such, a central question worth exploring in the October 2018 issue of the AMA Journal of Ethics is: What should be the roles of health professionals in promoting accountability by governments, non-governmental and civil society organizations, and the food and beverage industry in promoting strategies that can meet the nutrition and health needs of our global population? Other issues include: reducing and redistributing food loss and waste; incentivizing responsible food production and labeling practices; communicating about food practices and food access during clinical encounters; and strategies to promote food security as a goal of health professions.

Manuscripts submitted for peer review consideration and inclusion in this issue must follow all Instructions for Authors and be submitted by 12 February 2018.

Link for more information


Image: By Original: lyzadangerDerivative work: Diliff – http://www.flickr.com/photos/lyza/49545547, CC BY-SA 2.0, https://commons.wikimedia.org/w/index.php?curid=1405631

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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

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

Charlie Gard Post-Mortem: Could He Have Been Saved?

Charlie Gard would have turned one year old tomorrow.

Two days before the British infant died of a mitochondrial disease on July 28, a short article in MIT Technology Review teased that Shoukhrat Mtalipov and his team at Oregon Health & Science University and colleagues had used CRISPR-Cas9 to replace a mutation in human embryos, a titillating heads-up that didn’t actually name the gene or disease.

Yesterday Nature published the details of what the researchers call gene correction, not editing, because it uses natural DNA repair. I covered the news conference, with a bit of perspective, for Genetic Literacy Project.

Might gene editing enable Charlie’s parents, who might themselves develop mild symptoms as they age, to have another child free of the family’s disease? Could anything have saved the baby?

A TRAGIC CASE

The court hearing testimony on the case between Great Ormond Street Hospital (GOSH) and the family, published April 11, chronicles the sad story. The hospital had requested discontinuing life support based on the lack of tested treatment.

Charlie was born August 4, 2016, at full term and of a good weight, but by a few weeks of age, his parents noticed that he could no longer lift his head nor support any part of his body. By the October 2 pediatrician visit, Charlie hadn’t gained any weight, despite frequent breastfeeding. After an MRI and EEG, Charlie had a nasogastric tube inserted to introduce high-caloric nutrition.

By October 11, the baby was lethargic, his breathing shallow. So his parents, Connie Yates and Chris Gard, took him to GOSH.

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

Charlie Gard Post-Mortem: Could He Have Been Saved?

Charlie Gard would have turned one year old tomorrow.

Two days before the British infant died of a mitochondrial disease on July 28, a short article in MIT Technology Review teased that Shoukhrat Mtalipov and his team at Oregon Health & Science University and colleagues had used CRISPR-Cas9 to replace a mutation in human embryos, a titillating heads-up that didn’t actually name the gene or disease.

Yesterday Nature published the details of what the researchers call gene correction, not editing, because it uses natural DNA repair. I covered the news conference, with a bit of perspective, for Genetic Literacy Project.

Might gene editing enable Charlie’s parents, who might themselves develop mild symptoms as they age, to have another child free of the family’s disease? Could anything have saved the baby?

A TRAGIC CASE

The court hearing testimony on the case between Great Ormond Street Hospital (GOSH) and the family, published April 11, chronicles the sad story. The hospital had requested discontinuing life support based on the lack of tested treatment.

Charlie was born August 4, 2016, at full term and of a good weight, but by a few weeks of age, his parents noticed that he could no longer lift his head nor support any part of his body. By the October 2 pediatrician visit, Charlie hadn’t gained any weight, despite frequent breastfeeding. After an MRI and EEG, Charlie had a nasogastric tube inserted to introduce high-caloric nutrition.

By October 11, the baby was lethargic, his breathing shallow. So his parents, Connie Yates and Chris Gard, took him to GOSH.

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.