Tag: drugs

Bioethics Blogs

Happy 15th Birthday, Neuroethics!

[This post first appeared in the Neuroethics Blog on May 13, 2017: http://www.theneuroethicsblog.com/2017/05/happy-15th-birthday-neuroethics.html]

Fifteen years ago, on May 13, 2002, a two-day conference called “Neuroethics: Mapping the Field” began at the Presidio in San Francisco. And modern neuroethics was born. That conference was the first meeting to bring together a wide range of people who were, or would soon be, writing in “neuroethics;” it gave the new field substantial publicity; and, perhaps most importantly, it gave it a catchy name.

That birthdate could, of course, be debated. In his introduction to the proceedings of that conference, William Safire, a long-time columnist for the NEW YORK TIMES (among other things), gave neuroethics a longer history:

The first conference or meeting on this general subject was held back in the summer of 1816 in a cottage on Lake Geneva. Present were a couple of world-class poets, their mistresses, and their doctor. (Marcus)

Safire referred to the summer holiday of Lord Byron and Percy Bysshe Shelley; Byron’s sometime mistress, Claire Clairmont; and Shelley’s then-mistress, later wife, known at the time as Mary Godwin and now remembered as Mary Wollstonecraft Shelley. The historically cold and wet summer of 1816 (“the year without a summer”) led them to try writing ghost stories. Godwin succeeded brilliantly; her story eventually was published in 1818 as FRANKENSTEIN: OR, THE NEW PROMETHEUS.

Camillo Golgi, image courtesy of
Wikipedia.

Safire’s arresting opening gives neuroethics either too little history or too much. If, like Safire, one allows neuroethics to predate an understanding of the importance of the brain, early human literature – both religious and secular – show a keen interest in human desires and motivations.

Bioethics News

Berman Institute Bioethics Bulletin

Berman Institute Bioethics BulletinBerman Institute Bioethics BulletinVirus Hunters Map Zika’s Spread with DNAHow to End a LifeUsers’ Guide to Integrating Patient-Reported Outcomes in Electronic Health RecordsWhen the Patient Is a Gold Mine: The Trouble With Rare-Disease DrugsGraduation 2017The Messy Relationship Between Food Stamps and HealthPutting A Lid On WasteCuts to AIDS Treatment Programs Could Cost a Million LivesMedicine Is Going Digital. The FDA Is Racing to Catch UpWorld Health Organization Elects a New Director General from Ethiopia

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Bioethics News

When the Patient Is a Gold Mine: The Trouble With Rare-Disease Drugs

With a flagship treatment that helps fewer than 11,000 people, how is Alexion making so much money?

Source: Bioethics Bulletin by the Berman Institute of Bioethics.

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Bioethics Blogs

Snapshots of Life: Fighting Urinary Tract Infections

Source: Valerie O’Brien, Matthew Joens, Scott J. Hultgren, James A.J. Fitzpatrick, Washington University, St. Louis

For patients who’ve succeeded in knocking out a bad urinary tract infection (UTI) with antibiotic treatment, it’s frustrating to have that uncomfortable burning sensation flare back up. Researchers are hopeful that this striking work of science and art can help them better understand why severe UTIs leave people at greater risk of subsequent infection, as well as find ways to stop the vicious cycle.

Here you see the bladder (blue) of a laboratory mouse that was re-infected 24 hours earlier with the bacterium Escherichia coli (pink), a common cause of UTIs. White blood cells (yellow) reach out with what appear to be stringy extracellular traps to immobilize and kill the bacteria.

Valerie O’Brien, a graduate student in Scott Hultgren’s lab at Washington University, St. Louis, snapped this battle of microbes and white blood cells using a scanning electron microscope and then colorized it to draw out the striking details. It was one of the winners in the Federation of American Societies for Experimental Biology’s 2016 BioArt competition.

As reported last year in Nature Microbiology, O’Brien and her colleagues have evidence that severe UTIs leave a lasting imprint on bladder tissue [1]. That includes structural changes to the bladder wall and modifications in the gene activity of the cells that line its surface. The researchers suspect that a recurrent infection “hotwires” the bladder to rev up production of the enzyme Cox2 and enter an inflammatory state that makes living conditions even more hospitable for bacteria to grow and flourish.

Bioethics Blogs

Interview with Arthur Caplan

by Kaitlynd Hiller and Rachel F. Bloom

It is a difficult task to succinctly describe the professional accomplishments of Arthur Caplan, PhD. For the uninitiated, Dr. Caplan is perhaps the most prominent voice in the conversation between bioethicists and the general public, as well as being a prolific writer and academic. He is currently the Drs. William F. and Virginia Connolly Mitty Professor of Bioethics at NYU Langone Medical Center and NYU School of Medicine, having founded the Division of Bioethics there in 2012. Additionally, he co-founded the NYU Sports and Society Program, where he currently serves as Dean, and heads the ethics program for NYU’s Global Institute for Public Health. Prior to joining NYU, he created the Center for Bioethics and Department of Medical Ethics at the University of Pennsylvania Perelman School of Medicine, serving as the Sidney D. Caplan Professor of Bioethics. Dr. Caplan is a Hastings Center fellow, also holding fellowships at The New York Academy of Medicine, the College of Physicians of Philadelphia, the American Association for the Advancement of Science, and the American College of Legal Medicine. He received the lifetime achievement award of the American Society of Bioethics and Humanities in 2016.

Dr. Caplan’s experience is not at all limited to the academic realm: he has served on numerous advisory counsels at the national and international level, and is an ethics advisor for organizations tackling issues from synthetic biology to world health to compassionate care. Dr. Caplan has been awarded the McGovern Medal of the American Medical Writers Association, the Franklin Award from the City of Philadelphia, the Patricia Price Browne Prize in Biomedical Ethics, the Public Service Award from the National Science Foundation, and the Rare Impact Award from the National Organization for Rare Disorders; he also holds seven honorary degrees.

Bioethics Blogs

How you’ll grow up, and how you’ll grow old

By Nathan Ahlgrim

Nathan Ahlgrim is a third year Ph.D. candidate in the Neuroscience Program at Emory. In his research, he studies how different brain regions interact to make certain memories stronger than others. In his own life, he strengthens his own brain power by hiking through the north Georgia mountains and reading highly technical science…fiction.

An ounce of prevention can only be worth a pound of cure if you know what to prevent in the first place. The solution to modifying disease onset can be fairly straightforward if the prevention techniques are rooted in lifestyle, such as maintaining a healthy diet and weight to prevent hypertension and type-II diabetes. However, disorders of the brain are more complicated – both to treat and to predict. The emerging science of preclinical detection of brain disorders was on display at Emory University during the April 28th symposium entitled, “The Use of Preclinical Biomarkers for Brain Diseases: A Neuroethical Dilemma.” Perspectives from ethicists, researchers conducting preclinical research, and participants or family members of those involved in clinical research were brought together over the course of the symposium. The diversity of panelists provided a holistic view of where preclinical research stands, and what must be considered as the field progresses.

Throughout the day, panelists discussed different ethical challenges of preclinical detection in the lens of three diseases: preclinical research and communicating risk in the context of Autism Spectrum Disorder (ASD), interventions and treatment of preclinical patients in the context of schizophrenia, and the delivery of a preclinical diagnosis and stigma in the context of Alzheimer’s disease.

Bioethics News

‘I Knew They Were Sugar Pills But I Felt Fantastic’

IBS patient Linda Buonanno knew the pills she was given contained no active drugs, yet they had an immediate effect on her condition. So can placebos play a useful medical role?

Source: Bioethics Bulletin by the Berman Institute of Bioethics.

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Bioethics Blogs

Agreement and disagreement about experimental treatment. The Charlie Gard Appeal

by Dominic Wilkinson and Julian Savulescu

@Neonatalethics

@juliansavulescu

Tomorrow, the UK Court of Appeal will review the controversial case of a British infant, Charlie Gard. Charlie’s parents are appealing a recent High Court decision that gave doctors permission to withdraw his life support. They have raised money for Charlie to travel to the US for an experimental medical treatment.

Best Interests

The legal decision for Charlie will be based upon an assessment of his best interests. He has a rare genetic disorder affecting his muscles and his brain. He has been on life support since last October and has been progressively deteriorating. A neurologist in the USA has suggested that experimental nucleoside treatment might, in theory, offer some benefit, though it has never previously been tried in this situation.

The central ethical question is whether it would be best to provide the experimental treatment and continue intensive care for Charlie for several months more, or to withdraw treatment and allow him to die. How should we weigh up the risks and benefits of those two alternatives?

We have previously written about this difficult question. In a pair of editorials in the Lancet medical journal, we expressed different points of view. Dominic Wilkinson argued that the proposed course of treatment would do more harm than good. In his view, it is likely that Charlie would experience pain and discomfort from continued treatment; it is also unlikely, given what is known about it, that Charlie would benefit from nucleoside treatment. In contrast, Julian Savulescu argued that it is not clear that continued mechanical ventilation in intensive care is so terrible a life that it would not be worth living.

Bioethics Blogs

Mailbag

Brief comments on four short articles from this week, on disparate topics:

James Capretta of the American Enterprise Institute (meaning he is politically right of center) pleads in the Journal of the American Medical Association (JAMA) for compromise between Republicans and Democrats on further healthcare policy reform. Arguing that the House-passed American Health Care Act (AHCA) may never pass, he believes that a better result politically and for public policy would be if legislators could, in essence, split the difference between the AHCA and current law, the Affordable Care Act (ACA, aka “Obamacare”) on some points where he sees some agreements in principle. He proposes: 1) a hybrid approach between the ACA’s income-based tax credits for health insurance purchase and the AHCA’s age-based approach; 2) ensuring continuous insurance coverage for people with pre-existing conditions by modifying the ACA’s penalties for not being insured to fall more heavily on higher-income people; 3) setting limits on the favorable tax treatment of employer-paid health insurance premiums; 4) automatically enrolling uninsured people into a bare-bones, no-premium plan from which they could opt out in favor of re-enrollment in a different plan (a proposal that sounds to me a lot like the Democrats’ “public option” with a guaranteed fight over scope of coverage); and 5) limiting Medicaid expansion to tie it to reform of the program (something that sounds to me a lot like what I understand is currently in the AHCA). Mr. Capretta knows a lot more about health policy than I, and has been at it a lot longer. His ideas seem reasonable. But he admits that bipartisan compromise “may be wishful thinking,” and I must confess that my reaction to his article is, “when pigs fly.”

The editors of Nature smile on Pope Francis’s meeting with Huntington’s disease researchers and patients. Many of the latter group, they note, are poor Venezuelan (who there is not poor—and oppressed—these days?) Catholics who greatly aided research with tissue donations “with little tangible reward.” The editors further cite the Pope’s encyclical Laudato si, with its acceptance of the existence of anthropogenic climate change, as a hopeful sign that the Catholic Church will one day use its considerable influence to compromise on “sensitive issues” such as sanctity of human life from conception, and embryo selection. Still, “there is a chasm between religion and science that cannot be bridged. For all its apparent science-friendliness, Laudato si sticks to the traditional Vatican philosophy that the scientific method cannot deliver the full truth about the world.” The editors call for “fresh dialogue” between science and religion—by which they mean capitulation of the latter to the flawed-on-its-face epistemology of the naturalist. I’m not buying.

Bioethics News

Clinical Trial Participants Should Have a Say in New Drug Pricing

Spencer Phillips Hey: People who volunteer to participate in clinical trials of new drugs provide a valuable service to pharmaceutical companies and to the rest of us. In return, I think that they should have a say in how much these drugs will cost when they hit the market. Not only would that honor their service, but it would also provide a patient-centered mechanism to lower the price of new drugs

Source: Bioethics Bulletin by the Berman Institute of Bioethics.

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