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02/27/2015

When Are You Dead?

I am re-posting this press release from Southern Illinois University on some talks I am doing there next week.

CARBONDALE, Ill. -- A lecture next week at Southern Illinois University Carbondale will examine the question of when a person is legally dead.
Thaddeus M. Pope, director of the Health Law Institute at Hamline University School of Law, will present the 2015 John & Marsha Ryan Bioethicist-in-Residence lecture at the Southern Illinois University School of Law Center for Health Law and Policy.
Pope will address “When Are You Dead? Expanding Objections to Brain Death and Recommended Responses” at 5 p.m., Wednesday, March 4, in the courtroom in the Hiram H. Lesar Law Building.  The lecture is free and the public is encouraged to attend.
Media Advisory
Reporters, photographer and camera crews are welcome to cover the lecture. To make arrangements for interviews or for more information on the lecture, contact Alicia Ruiz, the law school’s director of communications and outreach, at 618/453-8700.  For the lecture in Springfield, contact Karen Carlson at 217/545-2155.
W. Eugene Basanta, the law school’s Southern Illinois Healthcare professor emeritus and health law and policy center director emeritus, said Pope will examine how the law defines death and the associated implications.

For several decades, neurological brain death has been legally established in the United States and throughout the world. Yet laws in California, New York and New Jersey require hospitals to continue physiological support, such as a ventilator, and there is an increasing push for similar accommodations in other states. Defining death is, at least in part, a cultural issue. Furthermore, it can have practical consequences for care providers and policymakers, Basanta said.

For example, a clinician and hospital can deem a patient is dead and move to take them off a ventilator, but then be threatened with a lawsuit by the family if that occurs. “There can be real practical challenges. The more we can do from a health care standpoint; the more technology we have, the more challenges we face,” Basanta said.

Pope will meet with the ethics committee from the Southern Illinois Healthcare hospitals on Thursday, March 5.  At 8:30 a.m., Friday, March 6, Pope will discuss futile care and the role that physicians play in a presentation entitled “Medical Futility-Policy Implications,” at the SIU School of Medicine’s South Auditorium, 801 N. Rutledge St., Springfield.

Pope, an associate professor of law, is chair of the Association of American Law Schools Section on Law, Medicine and Health Care. He speaks throughout the world and has a blog on futile care and end-of-life treatment.

This is the 11th bioethicist-in-residence lecture, and the ninth since John G. and Marsha C. Ryan endowed the visiting lecture series.

Founded in 2006, The John & Marsha Ryan Bioethicist-in-Residence supports an annual residence and lecture by a law or medicine ethics scholar for the SIU schools of law and medicine. The selected presenter visits classes at both schools and organizes interdisciplinary educational activities for students, residents and faculty. The presenter also interacts with students and offers a public lecture on the scholarship as it relates to law and medicine.

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02/27/2015

Lessons from Ebola: Presidential Bioethics Commission Releases Recommendations on Preparedness for Public Health Emergencies

Elizabeth Fenton

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02/27/2015

Collating Some Resources about 3-Parent IVF

With the recent news that Great Britain will indeed forge ahead with the use of nuclear transfer techniques to create “3-parent babies,” in an effort to interdict maternally-inherited mitochondrial disease, and in light of Courtney Thiele’s February 9 post on this blog (with the associated discussion), I thought it might be useful to take a moment and pull together some links to past discussions on... // Read More »

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This entry was posted in Genetics, Health Care and tagged , , , , . Posted by Jon Holmlund. Bookmark the permalink.

02/26/2015

The Center for Practical Bioethics Weighs In on Proposed “Right to Try” Legislation in Kansas

A perspective from John G. Carney’s (President, Center for Practical Bioethics) based on testimony before the House Committee on Health and Human Services (HB 2004, Right to Try)


Most of us would agree that the “Right to Try” legislation proposed in the State of Kansas is appealing in the world of ideas and the realm of rhetoric where personal freedom and the pursuit of limitless aspirations are admirable ideals. But the world of reality bends its merits to questionable decisions that may disrupt the safe delivery of care to the most vulnerable population that healthcare professionals are called to serve.

In bioethics we recognize the deep-seated human impulse to rescue the imperiled, which is what this legislation seeks to do. However, we also grudgingly acknowledge that we could not run our businesses, public and private services or health care systems while indulging this impulse without limits. Furthermore, it is also widely accepted that “spectacle ethics” that turn individual cases into cause célèbre should not dictate public policy – no matter how heart-breaking they are. In the real world, there are good reasons to think that the “Right to Try” legislation should not be pursued despite our natural impulse to rescue.

While the popular framing of this issue characterizes interventions as miraculous and life-saving, there is little to no evidence that the interventions actually result in a good or “hoped for” outcome. We are not bound to provide a treatment that offers no benefit. In fact, it is a violation of our moral duty to do so.

Proponents may argue, if there is some evidence in the first phase of the clinical trial process that the patient may benefit from this treatment, then we should allow them access in the face of their impending death. Urgency is a given in these instances and experts argue that impending death is a criterion that allows for special consideration in these cases. But we are also obliged to consider the facts before arguing for new legislation to provide that consideration. 

Recent efforts within the FDA clearly demonstrate the agency’s attention to this issue. The FDA has updated and expanded its expedited processes for accommodating requests for access to drugs under development called Investigational New Drug (IND) Application. FDA Commissioner Dr. Margaret Hamburg has reported that in FY 2013, the most recent year for which data are available, nearly 100% of all applications submitted were approved (974/977) and many of those requests processed within hours of submission.

FDA has further pledged to continue to streamline its efforts despite its mandate to ensure safety and efficacy. For individual states to adopt legislation that circumvents the process of safety and efficacy places undue burdens on private business and manufacturers. Drug and medical device companies have repeatedly expressed concerns about their ability to handle and process the applications diverted from the FDA.

Furthermore, drug manufacturers are under no obligation to provide access to their products. The effects of unlimited access to drugs that have only been through Phase One clinical trials cannot be known and subverts the scientific process. In turn, accommodating appeals by individual patients ultimately diverts private business interests on the basis of questionable practices.

The substantive ethical and practical problems associated with this bill, coupled with the fact that these instances are exceedingly rare (estimated to be about 5 cases a year in Kansas), raise serious doubts about its merits. Significant and promising collaborative efforts are underway, such as the ALS Emergency Treatment Fund, that offer far more hope to patients than “Right to Try.”

The agencies that provide for our safety and ensure the efficacy of treatments operate in the real world, as does the legislature. Despite our natural need to rescue the imperiled, this committee and this body retain the responsibility to legislate with prudence and wisdom.

John G. Carney, President and CEO
Center for Practical Bioethics

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02/26/2015

Bioethics Commission Releases Brief on Ebola and Ethics Preparedness for Public Health Emergencies

Today, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) released a brief, Ethics and Ebola: Public Health Planning and Response, to the administration and the public on ethical preparedness for public health emergency response, with a focus on the U.S. response to the current Ebola epidemic in western Africa. The brief considers […]

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This entry was posted in Health Care and tagged , . Posted by Elizabeth Fenton. Bookmark the permalink.

02/26/2015

When Doctors Discriminate

by Sean Philpott-Jones, Director of the Center for Bioethics and Clinical Leadership Most of you have probably never heard of Jami and Krista Contreras, a Michigan couple and the proud parents of a six-month-old girl named Bay. Shortly after Bay was born, the Contrerases began interviewing pediatricians, looking for one who practiced holistic medicine. After […]

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This entry was posted in Health Care and tagged , , , , , . Posted by The Bioethics Program. Bookmark the permalink.

02/25/2015

Obama’s Precision Medicine Plan and the New American National Biobank

<p class="MsoNoSpacing" style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;"><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">In the past State of the Union address, Obama announced his precision medicine initiative involving the creation of a new, <a href="http://news.sciencemag.org/biology/2015/01/obama-precision-medicine-plan-would-create-huge-u-s-genetic-biobank">national level biobank</a>.</span></p> <p class="MsoNoSpacing" style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;"><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">Biobanks collect biological samples (e.g., DNA, cells, tissues, blood) and health and lifestyle information (e.g., disease information, smoking habits). By collecting it once, biobanks store biosamples and information such that they can be used as new biomarkers are discovered. As the samples are shared with others, biobanking research offers a novel research platform to perform large-scale, epidemiological studies in order to associate genotypic or biological information with healthand disease. Many nations have made significant investments into biobanking research creating national level biobanks such as the U.K. Biobank, which has half a million samples, and the Icelandic biobank called deCode Genetics.</span></p> <p class="MsoNoSpacing" style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;"><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">Obama’s goal is to have at least <a href="http://www.sciencemag.org/content/347/6224/817.summary">1 million American volunteers</a> enroll in the biobank which will aim to conduct longitudinal studies examining genes, health and the environment. Collecting these many samples may not be so straightforward concluded a panel of experts at a recent workshop at the <a href="http://www.sciencemag.org/content/347/6224/817.summary">National Institutes of Health</a>. Several scientific and logistical issues were discussed. What types of diseases will be studied? Who will have access to the data? Who will be recruited? Will samples from other biobanks be incorporated into the precision medicine initiative? Yet with the many scientific and logistical issues, there are numerous ethical issues including informed consent, commercialization, and the return of results that must be given due consideration.</span></p> <p><strong style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.0400009155273px;">The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our <a style="color: #000099; text-decoration: underline;" href="http://www.amc.edu/Academic/bioethics/index.cfm">website</a>.</strong><span style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.0400009155273px;"> </span></p>

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This entry was posted in Health Care and tagged , , . Posted by Hayley Dittus-Doria. Bookmark the permalink.

02/25/2015

How Medicine Has Fared Under ISIS

by Craig M. Klugman, Ph.D.

Like much of the world, I find myself reading daily news stories about the Islamic State of Iraq and Syria (ISIS)—also known as the Islamic State of Iraq and Levant (ISIL). This is a militant group that has conquered much of the territory of Syria and Iraq. They have created an Islamic state, or caliphate, run by sharia law. According to news reports, Western youth are heading to Syria to join ISIS attracted by the ideas, the adventure, belonging to a group, or generally feeling disillusioned. It’s not just young people, but also engineers and doctors.…

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This entry was posted in Cultural, Featured Posts, Health Care, Politics and tagged , . Posted by Craig Klugman. Bookmark the permalink.

02/25/2015

The Man Who Mistook His Life For A Hat

by Jacob Dahlke, Bioethics Program Alum (MSBioethics 2012) Our society tends to put on pedestals the celebrities among us, particular upon their deaths. For author Oliver Sacks, it is no different except that he is not yet dead. He did, however, recently announce in the New York Times that metastasized tumors were found in his body. […]

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02/25/2015

Patient Modesty: Volume 72

What has been written throughout all these now 72 Volumes of Patient Modesty has been descriptions after descriptions of the "bad", thoughtless behavior of the medical system with regard to the dignity of the patients under the system's care.  I h...

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This entry was posted in Health Care and tagged . Posted by Maurice Bernstein, M.D.. Bookmark the permalink.