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03/12/2011 - 9:52pm

The New York Times reports that the the children of Rachel Nyirahabiyambere have challenged the decision of a court-appointed guardian to remove their mother's feeding tube.  An Alexandria, Virginia Circuit Court ordered her feeding tube reinstated while the legal issues were weighed.  

03/12/2011 - 1:25pm
An animated look at the many strange effects of placebos.

On February 28, 2011, at the Fourth Meeting of the Presidential Commission for the Study of Bioethical Issues, Susan Wolf, J.D. discussed  Returning Incidental Findings and Research Results in Genetic and Imaging Research*  * [video: 11.38-30:37, see also questions at the end]
Source: Publisher Web .pdf for
special issue:  Symposium:
 Incidental Findings in Human Subjects
Research From Imaging to Genomics.
Journal of Law, Medicine & Ethics,
 2008, v. 36, no. 2
Incidental findings (IF) and Individual Research Results (IRRs) are an important problem -- the public expects to hear about IFs, and yet up till now, research practice has been not to return them.
Internationally, more people are starting to speak of the subject's right and the researcher's duty to return IFs and IRRs.
Genetic family studies show IFs such as misattribution of paternity, undisclosed adoption, pleiotropy (one gene causing much variation), or an unanticipated genetic or chromosomal variant. In the case of misattributed paternity, preliminary results from genetic research suggest around 10% of the general research population may have this.
The increasing numbers of IFs and IRRs challenge the dichotomy once seen as fundamental,  between clinical and research practice.
Traditionally research has asked the narrow questions, while clinicians have had a broad duty of care for their patients.
New research technologies do address broad themes - GWAS (Genome-Wide Association Studies) for instance -- and generate many IFs and IRRs. So now researchers ought to triage these, into findings of which it is crucial to inform the research subject because of the danger of harm to them, those that are neutral, and those which are not important enough.
Biobanks, she added, were not designed for individuals to learn about their own genetic issues, with the current retrospective application of informed consent for results  becoming an increasing source of problems for the biobank operators.

03/10/2011 - 10:10pm

While it was taped last September and just aired a couple weeks ago, this 28-minute interview with Diane Meier is, as one would expect, an excellent primer and overview of what is going on in palliative care.

03/10/2011 - 12:02pm

The Maraachlis lost before the Consent and Capacity Board in January 2011.  They appealed that ruling to the Ontario Superior Court of Justice.  In March 2011, that court affirmed the ruling of the CCB.  

03/10/2011 - 9:54am

Most depictions of dementia describe the impact of behavior and cognitive deficits from the outside – the observations of clinicians, family members, co-workers, and neighbors. It is rare to find a perspective from the inside out – the experience of the person with advanced dementia. A mystery novel is an unlikely place to look for such a portrayal, yet Walter Mosley’s recent novel, The Last Days of Ptolemy Grey creates that perspective convincingly.

A prolific writer, Mosley is best known for his Easy Rawlins mysteries, set in Los Angeles in the 1940s, and for his lively and authentic portrayal of African-American urban life. This book has Mosley’s characteristic earthy dialogue, colorful people, and plot twists. But the main character-cum-detective, Ptolemy Usher Grey, is no Easy Rawlins. He is 91 years old, suffering from dementia, and living in squalor. That is, until an unlikely caregiver, 17-year-old Robyn Small, literally gets him to clean up his act. 

Mosley wrote this book after his 88-year-old mother Ella died of dementia. He was a long-distance caregiver for seven years. In an interview in the Wall Street Journal he said that one of the things he attempted to do in his book “is to show the narrative that exists inside [Ptolemy Grey’s] mind, to see those moments when someone is trying to tell you something and they still can’t do it . . .that struggle for articulation. That’s a very human struggle.”

As Mosley sees it, Ptolemy has a “place behind the door that kept many of his memories alive but mostly unavailable.” Shadows of the past keep intruding on the present, where he lives amid nonstop classical music and news on the radio, a dwindling supply of canned sardines, and fear of intruders. 

The complicated plot, which involves past injustices, buried treasure, failed relationships, and violence, turns on the drive-by shooting of Ptolemy’s grandnephew Reggie, the only one of his large but uninvolved family who had helped him do some shopping and banking. At Reggie’s funeral Robyn, who has no family but has been taken in by Ptolemy’s grandniece, takes special care of Ptolemy. The family then sends her to assume Reggie’s role.

Robyn does much more than Reggie ever did, and her kind but firm presence gives Ptolemy the human connection and stability – the love – that is missing in his life. It also gives him a mission: find out who killed Reggie and take care of unfinished business before he dies.  

In a Faustian twist, a physician offers Ptolemy a chance to recover his lost memory and lucidity. Dr. Ruben (henceforth called the Devil) is testing a new drug that he thinks will give Ptolemy a few months of clear-headedness but will kill him before he reaches 92. In a macabre version of informed consent, Dr. Ruben openly says the drug is dangerous and illegal in the United States but is being made in “a town in Southeast Asia where there are fewer laws governing research.” Over Robyn’s protests, Ptolemy chooses a few months of “getting his mind back” and signs a form giving his body to the doctor after he dies. No spoilers here: read the book to find out what happens.

The Last Days of Ptolemy Grey is a work that blends realism and fantasy. It is also a tribute to the powerful impact of a caregiver on the final chapter of a person’s life.

Carol Levine is director of the Families and Health Care Project of the United Hospital Fund and a Hastings Center Fellow.

03/09/2011 - 6:52pm
The IEET’s J. Hughes appeared on Stephen Euin Cobb’s podcast The Future and You. Topics include his doubts about the probability of the Singularity, technoprogressive transhumanism versus libertarian transhumanism, his new book Cyborg Buddah, the recent protests in the Middle East for more freedom and reform, the politics of science fiction, the personhood of clones, and much more.  Part 1  Part 2 
03/09/2011 - 12:48pm

Hacker group Anonymous takes down websites across the world for the greater good: peace, freedom of information and solidarity.

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03/09/2011 - 12:48pm

Hacker group Anonymous takes down websites across the world for the greater good: peace, freedom of information and solidarity.

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03/09/2011 - 8:31am

Placing a ban on cognitive-enhancing drugs won’t do anything positive, and neither will creating an attitude of disapproval.

Matt Lamkin argues here that universities shouldn’t ban cognitive-enhancing drugs like Ritalin and Adderall. Lamkin is a lawyer and, like myself, a master’s candidate in bioethics. He rightly believes that a ban would do little to promote fairness or safety among students. The rule followers would be at a disadvantage while the rule-breakers would be at a greater safety risk....