» Informed Consent Where the World Finds Bioethics Fri, 27 Mar 2015 14:54:00 +0000 en-US hourly 1 Research 2.0: Rise of the Citizen-Scientist and the Death of Privacy Thu, 26 Mar 2015 07:34:05 +0000 by Craig Klugman, Ph.D.

On Monday I attended a symposium on inter-professional education. During a session on new technologies in medicine (telemedicine, wearables, and mobile devices) I brought up the question of preserving privacy. The foundation sponsoring the event replied to me, “There is no such thing as privacy. It’s dead.” For someone who works in bioethics, serves on an IRB, and was formerly a journalist, this notion is scary. Perhaps, I have simply been in denial. After all, I use a mobile phone that tracks my position, synchs with the cloud, and provides much convenience.…

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Seeing medical records might ease hospital patients’ confusion Mon, 09 Mar 2015 22:28:29 +0000 0 Of Course 23andMe’s Plan Has Been to Sell Your Genetic Data All Along Tue, 13 Jan 2015 15:29:40 +0000 0 Sophie’s Choice: Can Machines Do Any Better? Wed, 24 Sep 2014 21:34:03 +0000 by Craig Klugman, Ph.D.

In the 1979 novel Sophie’s Choice by William Styron, the reader meets a Holocaust survivor who was forced in the camps to choose which of her two children would die immediately. Making the choice led to a life of alcoholism, depression, and self-destructive behavior. One interpretation of this novel, later made into an Academy Award winning film (1982), is that having choose whether a loved one lives or dies is a spirit-wrenching decision.

And yet, everyday, health care providers and bioethicists ask legally appointed health care power of attorneys and other designated surrogates to decide whether an incapacitated patient has surgery, receives a feeding tube, is resuscitated, or is intubated.…

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Big Data Peeps At Your Medical Records To Find Drug Problems Tue, 02 Sep 2014 23:57:34 +0000 0 California lawmakers pass bill banning inmate sterilizations Wed, 20 Aug 2014 20:21:30 +0000 0 Do OkCupid and Facebook experiment on vulnerable populations? Mon, 04 Aug 2014 18:25:10 +0000 by Keisha Ray, Ph.D.

A few months ago Facebook announced that some Facebook users were a part of a 2012 experiment. In the experiment Facebook altered the number of negative and positive posts and photos that appeared in users’ newsfeed. In a paper documenting the results of the study, authors noted that by changing what users saw in their feed, Facebook was able to alter moods, emotions, and the kind of posts that people posted. The study was meant to be an experiment in online social interactions and emotional connections.…

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AIN’T JUST THE MEAT IT IS ALSO THE MOTION: CONSENT MATTERS! Tue, 29 Jul 2014 17:18:43 +0000 “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.…

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Enter the Corporate Congress: SCOTUS & FACEBOOK Wed, 02 Jul 2014 03:01:44 +0000 by Craig Klugman, Ph.D.

One of the facts that hiring managers are taught is that you can never ask a potential employee about their religion (among other protected areas) unless the candidate brings it up. But after this week, any job candidate would be wise to ask their potential employer about his/her/its (in the case of corporations) religious beliefs.

Who one works for is increasingly determining not only what health care coverage you have but also what laws you have to follow and what legal protections you have.…

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Community Consultation Should Include Social Media Thu, 19 Jun 2014 06:41:24 +0000 by Nuriel Moghavem

A New York Times article published this week describes a clinical trial in Pittsburgh where incapacitated and rapidly exsanguinating gunshot victims have their blood replaced by cold saline for up to an hour in an effort to preserve neurological function and life. This trial has raised many ethical concerns, one of which is whether the community consultation conducted before and during the trial (which is required by federal guidelines) was adequate enough to inform the community about the opt-out trial and to collect extensive feedback from it.…

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MEDICAL FUTILITY, THEN AND NOW Mon, 16 Jun 2014 17:22:16 +0000 by Barron H. Lerner, M.D., Ph.D.

When an article promoting the idea of medical futility appeared in the Annals of Internal Medicine in 1990, my father was thrilled.  He believed the term was an apt description of the end-stage cases he too often saw as an infectious diseases consultant, in which he was expected to prescribe progressively more complicated antibiotic regimens to severely ill patients with no hope of recovery.

The concept of medical futility has achieved mixed success.  Advocates have promoted it as a way to discourage aggressive treatment of medical conditions that are not reversible. …

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Tragedy in Research History: The Children of Ireland Tue, 10 Jun 2014 19:14:40 +0000 by Craig Klugman, Ph.D.

For many people, the film Philomena was an introduction to a history of Irish babies being taken from their unwed mothers and adopted to “good” Catholic families in other countries. I put “good” in quotes because often what qualified a couple was the ability to pay. In the last week, news has come out of Ireland of a mass grave holding the remains of 796 infants buried in a septic tank on the grounds of a former “mother and baby” home in Galway.…

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Chip and Fish: Inadvertent Spies Sun, 08 Jun 2014 07:46:43 +0000 by Arthur Caplan, Ph.D.

There has been a great deal of fingerpointing, second-guessing and recrimination over the decision by the President to exchange five former Taliban leaders for the American soldier, Bowe Bergdahl.  “You’ve just released five extremely dangerous people, who in my opinion … will rejoin the battlefield,” Senator Marco Rubio, R-Fla., and likely Presidential candidate told Fox News.  Senator John McCain, R-AZ, told ABC news and many other outlets that he would never have supported the swap if he’d known exactly which prisoners would be exchanged given their former high roles in battling the U.S.…

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Revitalizing Informed Consent Law Wed, 04 Jun 2014 21:40:53 +0000 by Thaddeus Mason Post, JD, PhD

In a few days, the Journal of Clinical Ethics will publish my seventeenth “Legal Briefing” column.  Each column reviews recent legal developments involving a particular issue in clinical bioethics.  I have covered topics from organ donation and medical futility, to home birth and conscience clauses.  This one, in 25(2):152-174, is titled “Informed Consent in the Clinical Context.”

I covered this topic in two previous “Legal Briefings”: an overview in 2010 and another in 2013 that was focused on shared decision making and patient decision aids. …

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Artistic Inquiry: Informed Consent on Stage Fri, 16 May 2014 06:00:49 +0000 0 Bioethics Commission Staff Holds Multidisciplinary Educational Materials Webinar Mon, 28 Apr 2014 15:06:57 +0000 0 Would you share your DNA info to advance medicine? Wed, 23 Apr 2014 17:46:06 +0000 0 The Ethics of Advertising for Health Care Services Wed, 19 Mar 2014 19:26:00 +0000 0 The Supreme Court’s terrible—and dangerous—ruling this week on the Fifth Amendment. Fri, 20 Dec 2013 18:58:30 +0000 0 The Use of Deception in Public Health Behavioral Intervention Trials: A Case Study of Three Online Alcohol Trials Tue, 05 Nov 2013 21:09:43 +0000 0 Pennsylvania law gives patients the right to ask doctors about care Fri, 27 Sep 2013 18:22:28 +0000 0 Stop Therapeutic Obstinacy: Penalties for Administering Futile ICU Interventions Wed, 18 Sep 2013 17:36:45 +0000 by Thaddeus Pope JD Ph.D.

Intensive care clinicians and clinical ethicists have long known that the provision of interventions perceived to be “futile” is a major problem in U.S. hospitals.  Medical futility is frequently reported to be a leading reason for ethics consultations.  Last week, a new study in JAMA Internal Medicine further quantified the prevalence and cost of interventions perceived to be “futile.”

In the study, a “futile” intervention was defined as treatment administered in situations satisfying one or more of five conditions:

  1. The burdens grossly outweigh the benefits.
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Patient Informed Consent For The Teaching Hospital “Trainee” Care: Informing Realistic Scenarios Mon, 16 Sep 2013 20:00:48 +0000 by Maurice Bernstein MD

Informed consent is the ethical and legal hallmark for the support of patient decision-making in medicine.  Though the ethics of patient communication of facts without deceit has been part of medical consideration for generations, it wasn’t until the landmark decision Schloendorff v The Society of the New York Hospital in 1914 that informed consent became United States law.  Informed consent has been also been emphasized from the aspect of medical ethics, in recent decades, as decision making has moved from physician paternalism to patient autonomy. …

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UC Davis surgeons resign after bacteria-in-brain dispute Tue, 27 Aug 2013 17:03:26 +0000 0 Electronic Informed Consent: Will it Increase Patient Knowledge on Trials? Wed, 14 Aug 2013 22:32:29 +0000 0 Stop Worrying About Privacy, Start Caring About Identity Tue, 02 Jul 2013 17:41:49 +0000 0 The Ethics of “Gawking ” in Medicine Thu, 20 Jun 2013 16:42:17 +0000 Maurice Bernstein, MD

Gawking, defined in Merriam-Webster dictionary  as “to gape or stare stupidly.” It is the “stupidly” which I think sets the ethics of the behavior.  The “stupidly” can represent more than some ignorance of what is being observed but also a lack of true purpose at the time of the observation for either understanding or even participation.  Gawking is directed primarily for self-interest of the gawker and for no other purpose.  A general example of gawking can be given as motorists stopping briefly at an automobile accident simply to observe the trauma but not with an intent to provide assistance. …

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The OHRP and SUPPORT Wed, 05 Jun 2013 21:16:00 +0000 0 Nudging and Informed Consent Tue, 04 Jun 2013 21:16:52 +0000 0 India: Audio-visual consent to become mandatory for clinical trials soon Tue, 21 May 2013 18:37:11 +0000 0 Do Hospitalized Patients in a Nigerian Community Consider Informed Consent Necessary? Fri, 19 Apr 2013 17:17:21 +0000 0 Does Consent Bias Research? Wed, 03 Apr 2013 19:46:31 +0000 0 Failing to Follow Best Practices – Ovarian Cancer Tue, 19 Mar 2013 06:24:58 +0000 0 Furor over horsemeat reveals need for strict food labeling Thu, 28 Feb 2013 18:49:43 +0000 0 U.S. Injected Gitmo Detainees With ‘Mind Altering’ Drugs Thu, 12 Jul 2012 17:29:13 +0000 0 Hospitals ‘letting patients die to save money’ Tue, 10 Jul 2012 02:08:22 +0000 0 Informed consent: A broken contract Thu, 21 Jun 2012 18:19:36 +0000 0 Grady urges reform in human research Mon, 02 Apr 2012 14:21:31 +0000 0 To Tell the Truth, the Whole Truth, May Do Patients Harm: The Problem of the Nocebo Effect for Informed Consent Thu, 15 Mar 2012 11:55:40 +0000 0