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Enviado por Biblio on 24/4/2014 16:03:08 (5 Lecturas)

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As part of its ongoing effort to support bioethics education, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has developed and posted to a new primer to inform institutional review boards (IRBs) and their members on the ethical management of incidental and secondary findings. The Bioethics Commission designed the IRB Primer to aid IRB members as they review research protocols, grapple with the issues related to incidental findings, and help researchers implement the Bioethics Commission’s recommendations in Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts.

Enviado por Biblio on 23/4/2014 11:47:37 (14 Lecturas)

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The parents of a young woman named Vickie Harvey, who tragically died at the age of 24 from acute myeloid leukaemia, have launched a campaign to give patients the right not to know that they are terminally ill. Eric and Lyn Harvey claim that their daughter lost the will to live when, after her leukaemia returned following a period of remission, doctors told her ‘in graphic detail’ how she would now succumb to her disease. Eric Harvey told the Daily Mail:

After [Vickie was about her prognosis] she changed – and never really got out of bed again. We knew she was dying, but we feel that, if she hadn’t been told that day, she would have lasted longer’.

Mr Harvey claims that prior to this consultation, Vickie had expressed a wish to not hear anything negative about her illness, since she didn’t want to lose hope. However, he also describes how one of Vickie’s doctors had argued that Vickie ought to be given information about her prognosis so that Vickie could prepare herself, despite Mr and Mrs Harvey’s views to the contrary. Following Vickie’s death, Mr and Mrs Harvey are campaigning for the introduction of a waiver that would allow patients to opt out of being given bad news; the online petition for ‘Vickie’s wish’ has over 6’000 signatories.

Enviado por Biblio on 22/4/2014 12:55:54 (52 Lecturas)

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Today brings the online publication in JAMA (free access) of an essay, “Pediatric Euthanasia in Belgium: Disturbing Developments,” by Andrew Siegel (U. Penn), Dominic Sisti (U. Penn) and Arthur Caplan (now at NYU).

In specific view is Belgium’s February 2014 amendment to its 2002 law legalizing euthanasia. The amendment, which is now fully enacted in Belguim, extends lawful euthanasia to children with “constant and unbearable suffering.” What is contemplated really is physician-assisted suicide (PAS), at least for the moment, as opposed to the active, involuntary killing of neonates authorized by the Groningen protocol in the Netherlands. Presumably, the child requests that the doctor help him or her die.

Enviado por Biblio on 16/4/2014 9:05:37 (111 Lecturas)

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Douglas Diekema will be in town on Friday, April 11, 2014. He will be speaking at the University of Minnesota from 12:15-1:30 pm in Room 3-100 Mayo (East Bank Campus of the University of Minnesota). His topic: "Ashley X Revisited: Growth Attenuation and Children with Severe Developmental Disabilities."

Recall that one of the outcomes of the investigation after the Ashley X case was that the ethics committee would include a disability representative.

Enviado por Biblio on 11/4/2014 10:18:01 (110 Lecturas)

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Rock Ethics Institute Research Ethics Lecture on Postwar NIH Research Ethos and the Guatemala STD Experiments
Written by Kayte Spector-Bagdady on April 7, 2014 — Leave a Comment
“Ethically Impossible” STD Research in Guatemala from 1946 to 1948 details the federally-supported U.S. Public Health Service (PHS) experiments in Guatemala supporting STD prevention in the U.S. Armed Forces after World War II. By the time PHS researchers left in 1948, over 1,300 vulnerable Guatemalan subjects had been intentionally exposed to syphilis, gonorrhea, and/or chancroid through invasive and painful procedures. Over half of these subjects never received any treatment for their potential infections. The research was never published.

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) found that this research violated both contemporaneous and contemporary scientific and ethical research norms; the experiments have been uniformly repudiated by scientists and ethics scholars alike. But public health research is not an individual activity, and the Guatemala STD research is not the product of an individual’s mistakes. The Guatemala STD experiments were recommended for approval by the first National Institutes of Health study section at its first meeting. “Something of an Adventure”: Postwar NIH Research Ethos and the Guatemala STD Experiments takes a closer look at the structured grant system and defined research environment that supported and enabled these experiments over a two-year period.

Enviado por Biblio on 10/4/2014 13:34:03 (149 Lecturas)

Proceso de Consentimiento Informado en pacientes diabéticos con amputación de extremidad inferior en un hospital público.

Pablo Ruiz R.*, Constanza Oyarzún G.*, Alejandro Dueñas R.**,
Lorna Luco C.***, María Inés Gómez B.***
Universidad del Desarrollo
Contacto: Pablo Ruiz Riquelme
Celular: +56993278772
Dirección postal: Cerro El Plomo 6671 depto. 42, Las Condes, Santiago, RM. (cod.7561006)

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Enviado por Biblio on 9/4/2014 10:23:50 (98 Lecturas)

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The New Yorker this week Laura Parker reports on a new internet start-up that has a technological solution to a vexing old problem: mortality. has the tagline in huge font on its site, “Simply Become Immortal.” The CEO, Marius Ursache, says he is trying to solve the “incredibly challenging problem of humanity.”

Transhumanists like Ray Kurzweil have been arguing for a while now that it is our unique arrangement of information that makes us human—not anything to do with flesh, or emotions, or spirit, per se. Therefore if you capture those data sets and upload them, then “you” could “live” forever. The Transhumanists are more hopeful that artificial intelligence would allow the sine qua non of sentience to emerge from the machines into which our data becomes hard-wired.

Enviado por Biblio on 8/4/2014 16:43:36 (103 Lecturas)

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Is it ever good to stigmatize? This question has received significant attention of late in many bioethical and medical journals.

Indeed, the International Journal of Obstetrics and Gynaecology recently published an editorial by two University of Tornoto bioethicists discussing stigmatization in healthcare. The article, entitled Reducing Stigma in Reproductive Health, criticises the continuing stigmatization of both users and providers of reproductive healthcare. The article focuses particularly on the ongoing shaming of individuals involved in abortions, be they doctors or patients:

Enviado por Biblio on 7/4/2014 10:31:22 (96 Lecturas)

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What Will It Take to Revolutionize Informed Consent?

Look. We’ve had a legal duty of informed consent for, what, 40 years? But it’s really been more illusion than reality. There are three big problems: It happens poorly. It happens late. Or it doesn’t happen at all.

Today, you could be seeing Doctor A and I could be seeing Doctor B in an office right next door, 15 feet away, and we might be getting completely different informed consent experiences — both in the amount of time our doctors talk with us, what kinds of information they give us, how much they give us, even how they frame the procedure itself. That’s not new. We’ve known for decades that there’s been a gap (maybe even a chasm) between the ethical and legal principles of informed consent and what actually happens in hospitals and doctors’ offices across the country.

Shared decision making and patient decision aids really promise to close that gap. Whether it’s a video that graphically illustrates the benefits and alternatives associated with a proposed intervention, or a simple pie chart or graph that explains the procedure’s risks, these aids turn out to make a huge difference.

Enviado por Biblio on 4/4/2014 12:48:21 (144 Lecturas)

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Abstract / Informació
Joan Cornet i Prat, director del Centre de Competència mHealth, MWC Barcelona, reflexiona sobre els reptes de la tecnologia per empoderar els pacients i millorar la qualitat de vida i la salut dels ciutadans. Però afirma que els nous processos no estan exempts de dilemes ètics encara a resoldre i alerta del perill de fracturació de la societat en relació als recursos de cada ciutadà.

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