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07/29/2014

AIN’T JUST THE MEAT IT IS ALSO THE MOTION: CONSENT MATTERS!

“But look, you found the notice, didn’t you?”

“Yes,” said Arthur. “yes I did. It was on display in the bottom of a locked filing cabinet stuck in a disused lavatory with a sign on the door saying ‘Beware of the Leopard.’”

                           –Douglas Adams, The Hitchhiker’s Guide to the Galaxy

Any apologia for Facebook’s recent behavioral study has to address one issue head on: that of informed consent. Informed consent is the bedrock upon which the ethics of all biomedical and behavioral research on humans rests. And it is where Facebook’s experiment went so wrong. Even the spirited defense by Meyer et al.

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This entry was posted in Featured Posts, Human Subjects Research & IRBs, Informed Consent, Media. Posted by Arthur Caplan. Bookmark the permalink.

07/29/2014

The D.O. Is in Now

[The New York Times] The old Blumstein’s department store sits across 125th Street from the legendary Apollo Theater. It’s something of a Harlem landmark, where “don’t buy where you can’t work” protests led to the hiring of African-Americans as the first salesclerks in 1934 and where the Rev. Dr. Martin Luther King Jr. was stabbed […]

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07/29/2014

New Educational Module on Informed Consent in Safeguarding Children

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has just posted to Bioethics.gov a new educational module on informed consent in the context of pediatric medical countermeasure research. The module integrates material from the Bioethics Commission’s March 2013 report Safeguarding Children: Pediatric Medical Countermeasure Research. The aim of this module is to […]

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07/29/2014

New Educational Module on Informed Consent in Safeguarding Children

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has just posted to Bioethics.gov a new educational module on informed consent in the context of pediatric medical countermeasure research. The module integrates material from the Bioethics Commission’s March 2013 report Safeguarding Children: Pediatric Medical Countermeasure Research. The aim of this module is to […]

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07/28/2014

Remote Control Birth Control

<p>The goal of the <a href="http://www.gatesfoundation.org/What-We-Do/Global-Development/Family-Planning">Bill &amp; Miranda Gates Foundation Family Planning program</a> is “to bring access to high-quality contraceptive information, services, and supplies to an additional 120 million women and girls in the poorest countries by 2020 without coercion or discrimination, with the longer-term goal of universal access to voluntary family planning.”  This is an extremely important endeavor and I’m glad that this program is devoting so many resources to achieving its goal. </p>
<p>MicroCHIPS, a company based in Lexington Massachusetts, is one of the companies/organizations working with the Bill &amp; Melinda Gates Foundation Family Planning program. They are <a href="http://www.cnet.com/news/remote-controlled-chip-implant-could-be-the-future-of-contraceptives/">developing a contraceptive chip</a> that can be implanted under a women’s skin. The chip, just 20 x 20 x 7 millimetres, would deliver daily dose hormones and could last up to 16 years. The chip will be controlled by remote control so that if a woman decides she wants to become pregnant, she can deactivate the chip. When she wants to resume contraceptive use, she can reactivate the chip.</p>
<p><strong style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 20px;">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></p>

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

07/28/2014

EVERYTHING COMES FROM THE STREETS: Chicano Low Riders and Bioethics.

Last fall at the San Francisco Latino Film Festival there was a preview of the spectacular documentary, Everything Comes from the Streets. This film is an example of excellent programming on the part of that festival. This year the SF Latino Film Festival runs from September 12 – 22, 2014.

Everything Comes from the Streets is a documentary directed by Alberto Lopez Pulido and co-produced by Mr. Pulido, Kelly Whalen and Rigo Reyes.  It is a story about the significance of Low Riders in Chicano culture. A beautifully shot film, it carefully handles the struggle for identity and civil rights, particularly in the Chicano community. My interest in Low Rider Culture was re-ignited when it was used in the San Francisco based film La Mission (Bratt, 2009), which was the first film blogged on this website.

A Low Rider is both a car and the person who drives it. Low Riders, the cars, are rigged by the expertise of community developed mechanical physicists, operating under the cloak of local driveways and garages. Materials for the work historically come from salvage yards, not only deriving from cars, but the hydraulics of discarded airplanes. The rigging results in the rear of the car riding lower to the ground than the original factory specifications.  This aesthetic preference is also the restructuring that makes the car float, slowly down the roads, cruising on parade. This film illustrates why these vehicles need to be on parade. They are extraordinary pieces of artwork, expressing creative, cultural and engineering pride. There is more to this particular cultural icon than the cars themselves. 

Everything Comes from the Streets traces Low Riders from their roots in East Los Angeles and Espanola, New Mexico. The visual home of the film is San Diego County.  After the first Low Riders hit the streets in the 1950′s, organizations began to spring up in support of them; the cars, the people who drove and their admirers.  These social “Car Clubs” developed structures that were also able to support community based social change. Additionally, the Low Rider movement had a specific contribution to Chicana feminism. By the 1970s, women, as well as men, were frequently involved in the same mechanics, redesign of their own vehicles for display, expression of creativity, pride, and organized community responsibilities. 

In the late 1970′s, Chicano pride became a threat to the USA status quo. The film illustrated this reality in the San Diego area.  There, city ordinances were selectively enforced to prohibit Low Riders from Cruising and gathering audiences. This abuse of law violated the constitutional right of the Chicano community to peacefully assemble.  Collateral congestion and random legal offenses were inaccurately attributed to organized Car Club cruising. Low Rider Culture was misrepresented as synonymous with gang culture, particularly in the 1979 film, Boulevard Nights.  This representation fueled an even more skewed perception of Low Riders.

Disruption of under-resourced ethnic communities of color, under the guise of “urban renewal,” was the norm in the 1960′s and 1970′s. Being organized, Car Clubs were logically part of community leadership that struggled, and still do struggle, against attempts to dilute Chicano identity and deny the community a geographic venue. With surprising good humor, Everything Comes from the Streets speaks to resisting oppression based on race and class. 

Why should Bioethicist care about Everything Comes from the Streets? The empirical Two Tiered Assessment of Shared Decisional Capacity reviews, Disclosure andBarriers to Disclosure during the process of informed consent, in medicine and clinical research. Clinicians should be aware of common barriers to shared decisional capacity. Examples of those barriers are: physical states including pain; psychological distress like grief, post-traumatic stress syndrome, depression/anxiety; educational differences (language and literacy) and patients’ perception of institutional chauvinisms. Institutional chauvinisms include the major “-isms.”  Examples are ageism, sexism, genderism, classism, colonialism, professionalism and racism.  People tend to shut down communication and understanding when they recognize chauvinisms are being applied to them, with or without intention. 

Barriers to shared decisional capacity are barriers to good clinical medical ethical care of patients — That’s why Everything Comes from the Streets is important to Bioethicists. Once barriers are identified, clinicians can work to counter the negative effects.  In the case of institutional chauvinisms, clinicians demonstrating a commitment to learn about a person’s family, spiritual needs, struggles and icons of culture, (FaSSI), may help to remove barriers to shared decisional capacity.   Born from the Chicano community, the film Everything Comes from the Streets is about family, spirit, struggle and cultural icons and can help improve goals of more ethical medical care.  

references:

Everything Comes from the Street directed by Alberto Lopez Pulido (2014) http://everythingcomesfromthestreets.vhx.tv/watch (USA) 56min  


LA MISSION. 35 mm. Directed by Peter Bratt. USA. Screen Media Ventures. 2010 (117 min)


September Williams’  Bioethics Screen Reflections: LA MISSION : Prototype for the Peace Genre http://www.bioethicsscreenreflections.com/2010/05/la-mission-prototype-for-peace-genre.html?spref=tw


Regarding Shared Decisional Capacity, FaSSI and institutional chauvanisms see online: Williams, September.  Pain Disparity: Assessment and Traditional Medicine in THE AMERICAN ACADEMY OF PAIN MEDICINE Textbook on Patient Management. 2012 Deer, T.R.; Leong, M.S.; Buvanendran, A.; Gordin, V.; Kim, P.S.; Panchal, S.J.; Ray, A.L. (Eds.) Springer SBN 978-1-4614-1559-6

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This entry was posted in Health Care and tagged . Posted by September Williams, MD. Bookmark the permalink.

07/28/2014

The End of End-of-Life Law

Check out this new article by UVA professor Lois Shepherd “The End of End-of-Life Law.”


As the title suggests, Shepherd’s article argues that questions about medical care at the end of life should be approached like other important questions about medical care—with consideration to patients’ wishes, values, interests, and relationships, and without special laws, special burdens of proof, or unique requirements for documentation. She contends that reducing legal distinctions between end-of-life decisions and other health care decisions can bring efficacious changes to both sorts of decision making processes.


The heart of the article is a “blueprint for reform” through the following eight general principles that should guide the law relating to all health care decisions, including those we now think of as end-of-life decisions.

  • Principle 1: Respect and Care for the Patient Require Balancing Rather Than Rigidly Prioritizing Among Patient Instructions, Wishes, Values, and Interests
  • Principle 2: All Patients Should Have a Surrogate Decision Maker, and the Same Standards of Decision Making Should Apply to All Surrogate Decision Makers
  • Principle 3: Requirements for Advance Documentation by Patients Should Be Minimal
  • Principle 4: Binding Pre-Commitments Should Be Allowed Only Sparingly and for Compelling Reasons; They Should Not Be Required or Encouraged
  • Principle 5: Rushed Decisions That People Do Not or Should Not Want to “Live Like That” Should Be Avoided
  • Principle 6: Communication About Health Care Decisions Should Be Encouraged but Not Scripted by Law
  • Principle 7: Appropriate Safeguards to Protect Patients with Diminished Capacity Are Needed
  • Principle 8: Relief of Pain and Suffering Should Always Be Permitted and Considered an Important Goal of Care


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This entry was posted in Health Care and tagged , . Posted by Thaddeus Mason Pope. Bookmark the permalink.

07/27/2014

New NINR Video Focuses on Preparing for the End of Life

A new video, co-produced by the National Institute of Nursing Research seeks to help people by answering one of life’s most sensitive questions: how can a person best prepare for the end of life? 





Developed to highlight content from NINR’s recently released End of Life module, the video stresses the importance of learning about end of life care options, which focus on comfort and quality of life.


NINR Director Dr. Patricia A. Grady, the featured speaker in the video, explains “A person can best prepare for the end of life by becoming informed. So many of us have questions about death and dying but hesitate to ask them. Our module provides comprehensive information about the many issues that can arise at the end, from the physical, emotional, and mental symptoms associated with dying to more practical concerns, such as where to find end-of-life care.”   

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This entry was posted in Health Care and tagged , . Posted by Thaddeus Mason Pope. Bookmark the permalink.

07/26/2014

Following in the Errant Footsteps of the VA

The recent revelation of the crisis—and failure–of caregiving in the VA health system raises grave concerns for American health care in general and should motivate physician leaders to re-evaluate their approach to ethical health care. Until recently, the VA health system was a recognized leader in health care quality, patient safety and ethics, outperforming most American hospitals in these areas. It had also established an… // Read More »

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

07/25/2014

Even after Tracey Decision, Unilateral & Covert DNR Orders Continue

Last month, the UK Court of Appeal confirmed that while clinicians do not need family consent to write a DNR order, they must at least consult with families before writing a DNR order on an incapacitated patient.  

But a court decision does not c…

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This entry was posted in Health Care and tagged , . Posted by Thaddeus Mason Pope. Bookmark the permalink.