Blog Posts (1609)
February 27, 2015
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.
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.
February 27, 2015
February 27, 2015
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 »
February 26, 2015
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.
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 CEOCenter for Practical Bioethics
February 26, 2015
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 […]
February 26, 2015
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 […]
February 25, 2015
<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>
February 25, 2015
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).…
February 25, 2015
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. […]
February 25, 2015
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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February 12, 2015 4:30 pm
Seniors admitted to the hospital intensive care unit (ICU) were more likely to die or sharply decline soon after their release depending on how well they functioned beforehand, according to a new study.
January 30, 2015 2:50 pm
The White House is committing $215 million to support efforts to develop personalized medicine, a priority the President touched on in his State of the Union earlier this month.
January 29, 2015 2:55 pm
President Obama will seek hundreds of millions of dollars for a new initiative to develop medical treatments tailored to genetic and other characteristics of individual patients, administration officials say.
January 26, 2015 2:49 pm
Aging research, as we knew it in the 1990s and 2000’s, is being abandoned in favor of something much more ambitious. The central features of longevity research include an embrace of big data, a pivot away from studies hoping to find aging genes, a recognition that aging is best thought of a collection of diseases, not just one disease.
January 20, 2015 7:16 pm
A contract dispute between health insurance provider Blue Shield of California and the Sutter Health network of doctors and hospitals is threatening to force nearly 280,000 consumers in Northern and Central California to find new doctors.
September 23, 2014 1:55 pm
Although doctors say many patients in hospitals could be wearing their own clothing below the waist, and most want to, a majority still don’t, according to a small Canadian study.
September 15, 2014 5:14 pm
Two of California’s largest health insurers are partnering to create a massive database of patient medical records. But the system faces significant technological challenges and privacy concerns.
September 11, 2014 2:54 pm
In this edition of Health Reform Watch: Harvard Asst. Professor Ben Sommers explains his widely-quoted study showing a measurable drop in adult deaths in Massachusetts in the wake of the state’s health reform program, the model for the Affordable Care Act.
September 8, 2014 6:47 pm
President Barack Obama’s top health adviser on Monday called for an end to partisan bickering over Obamacare, saying the public and businesses are sending a clear message to Washington that it is time to move on with implementing the law.
August 11, 2014 1:31 pm
In a development that raises a host of ethical issues, Spain announced it had obtained a scarce U.S.-made experimental Ebola drug to treat a Spanish missionary priest infected with the killer virus.
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