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Enviado por Biblio on 27/3/2015 10:20:54 (11 Lecturas)

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Guest post by Dr Anna Middleton, Senior Social Scientist at the Wellcome Trust Sanger Institute, who spoke at the launch of the Council’s report on biological and health care data.
My career has explored, from multiple different perspectives, the impact of genomics on people. Genomics refers to the study of a person’s 20,000 or so genes. Given the almost infinite ways that people can be genetically different to each other, genomic research often needs to be done on a very large scale in order to be able to interpret the significance of findings, particularly a rare genetic change. So, Big Data and Genomics go hand in hand.
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Enviado por Biblio on 26/3/2015 9:37:27 (12 Lecturas)

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The European Critical Care Foundation is sufficiently concerned about this to have organised a one-day meeting on the subject, hosted by the Nuffield Council on Bioethics in London on 6th March. It was a fascinating meeting, with lots of unexpected conclusions.

Although medico-legal post-mortems for the coroner continue to be performed in large numbers, the number of post-mortem examinations carried out with the consent of relatives has shown a progressive decline across Europe. The UK is leading the way; less than 0.1% of deaths in the UK are now followed by a consented post-mortem.

Enviado por Biblio on 25/3/2015 9:15:32 (15 Lecturas)

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Bioethics Commission Releases Brief on Ebola and Ethics Preparedness for Public Health Emergencies

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 what lessons the U.S. response to the epidemic has for ethics preparedness for future public health emergencies, emphasizing the role of proactive democratic deliberation in developing responses that reflect public values in a pluralistic society and an increasingly interconnected world. The brief also considers two areas of particular controversy: 1) the ethical use of liberty-restricting public health measures, such as quarantine; and 2) the ethical conduct of research during public health emergencies.

Enviado por Biblio on 24/3/2015 9:51:26 (25 Lecturas)

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Guest post by Dr Tony Calland, Joint Vice-Chair of the Health Research Authority Confidentiality Advisory Group, who was invited to speak at the launch of the Council’s report on data in biomedical research and health care on 3 February 2015.

The UK is very fortunate to have a well constructed digital medical record system covering all of the 60 million citizens in these islands.
The computerised GP record holds many treasures, some yet undiscovered, recognising new associations between medical conditions or events which will enhance our understanding of disease and treatment. The Hospital Episodes Statistics (HES) database similarly holds a wealth of information. The power that can be generated by linking just these two is very considerable indeed, let alone linkage between many other databases, medical and non medical.
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Enviado por Biblio on 23/3/2015 13:06:46 (27 Lecturas)

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Estamos en periodo pre-electoral. Por ello os recuerdo este cuaderno de ética en clave cotidiana que escribimos el pasado año entre Rafael S. Hernández y yo mismo.

En ella damos pistas de por dónde creemos que deberían apuntar nuestros partidos para mejorar nuestra sociedad en una clave ética.

Enviado por Biblio on 20/3/2015 9:07:33 (37 Lecturas)

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A Call for Moral Leadership

“I am an invisible man. No I am not a spook like those who haunted Edgar Allen Poe: Nor am I one of your Hollywood movie ectoplasms. I am a man of substance, of flesh and bone, fiber and liquids- and I might even be said to possess a mind. I am invisible, simply because people refuse to see me.” - Ralph Ellison

Enviado por Biblio on 19/3/2015 11:22:50 (34 Lecturas)

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Written by Matthew Davis on February 5, 2015 — Leave a Comment
As part of its review of U.S. engagement in the global response to the current Ebola epidemic, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) sought insights from a panel of experts with decades of experience on the front lines of fighting infectious diseases.

Peter Hotez, M.D., Ph.D., Dean of the National School of Tropical Medicine at Baylor College of Medicine and President of the Sabin Vaccine Institute, said he hopes the Ebola epidemic will prompt health officials in the U.S. and around the world to get ready for what he believes could be even more disruptive and deadly encounters with infectious disease in the near future.

“It would be nice if for once the world could be proactive,” he said.

For example, Hotez said he has been advising the State Department and the White House that “the next shoe about to drop is in the Middle East and North Africa.”

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Enviado por Biblio on 18/3/2015 10:15:48 (45 Lecturas)

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The utilitarian argument of John Harris and the libertarian position of Ronald Green concerning genetic modifications of children omit a parental and ancestral perspective. John Rawls proposes that the negotiators of obligations to future generations be viewed as heads of families. Drawing upon Rawls, I defend four claims: first, in seeking to balance social stability, autonomy, and general welfare the negotiators would assign priority to social stability; secondly, the negotiators would preserve a distinction between therapeutic and non-therapeutic human genetic modifications; thirdly, they would rule out non-therapeutic genetic modifications of children; finally, the negotiators would endorse a right not to be discriminated against on the basis of genotype.

KEY WORDS: human genetic modification, future generations

Enviado por Biblio on 17/3/2015 10:36:04 (41 Lecturas)

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As the accountable care organization (ACO) model spreads in the United States, early experiences are being used to improve operations. One aspect of the model receiving substantial attention is the organization's influence on referrals. ACOs are accountable for all their patients' expenditures, whether incurred within or outside their organization, and many patients receive specialty care outside their ACOs.1 Influencing where patients receive care may be a mechanism for assuring quality and controlling cost by reducing duplicative, unnecessary, or high-priced care or by increasing the use of high-quality care — and may therefore be critical to achieving ACOs' cost and quality targets.

Enviado por Biblio on 16/3/2015 9:42:44 (56 Lecturas)

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This Review summarizes and draws connections between diverse streams of empirical research on privacy behavior. We use three themes to connect insights from social and behavioral sciences: people’s uncertainty about the consequences of privacy-related behaviors and their own preferences over those consequences; the context-dependence of people’s concern, or lack thereof, about privacy; and the degree to which privacy concerns are malleable—manipulable by commercial and governmental interests. Organizing our discussion by these themes, we offer observations concerning the role of public policy in the protection of privacy in the information age.

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