The Low-Coste Innovation Blog welcomes YOU


Welcome to this modest blog I started in early 2005! I'm a Semantic Web Geek and a Web Science Evangelist.

To cure diseases like cancer and cystic fibrosis, we will need to target gene mutations, not organs! I am convinced that the future of replacement medicine (organ transplant) is genomics (the science of the human genome).
Anticipating the $100 genome era and the P4™ medicine revolution. P4 Medicine (Predictive, Personalized, Preventive, & Participatory): Catalyzing a Revolution from Reactive to Proactive Medicine.


After low-cost airlines (Ryanair, Easyjet ...) comes "low-cost" participatory medicine. Some of my readers have recently christened this long-lasting, clumsy attempt at e-writing of mine "THE LOW-COSTE INNOVATION BLOG".

Jean-Michel Billaut, famous French @nthropologist and Net economy geek : "
There are times when I think there are basically two kinds of people in my country ... A '1.0' Top-Management, frantically clinging to and stuck in the past and in (bio)conservatism... and a '2.0' startup ecosystem... building... building slowly... towards the future..."

Catherine Coste,
MIT certificate in Genomics, a Tim Burton fan (whose films are dealing with death, like this modest Blog -- and sometimes we just hate it!), a Wellywood fan (the new Hollywood)... I come from France (hopefully from that "2.0" part thing) and travel a lot: New-Zealand, Asia (Malaysia, Singapore), UK...

A death and health geek and travel buff of some kind, I love meeting new faces
. My motto:
Go Where You Are Celebrated, Not Where You Are Tolerated.

I love Genomics. Would you rather donate your data, or... your vital organs?

Audio files on this blog are Windows files ; if you have a Mac, you might want to use VLC (http://www.videolan.org) to read them.

Concernant les fichiers son ou audio (audio files) sur ce blog : ce sont des fichiers Windows ; pour les lire sur Mac, il faut les ouvrir avec VLC (http://www.videolan.org).


Appel à témoignage - Please share your experience - Teilen Sie Ihre Erfahrungen mit ! Don d'organes - Organ Donation - Organspende :


Appel à témoignage : lettre ouverte aux proches confrontés à la question du don d'organes (lire)

Please share your experience : letter to the attention of next-of-kin of donor-eligible individuals (read)

Im Krankenhaus oder in der Klinik wurden Sie nach dem mutmasslichen Willen Ihres Verwandten gefragt : ob er oder sie sich für Organspende ausgesprochen habe. Bitte teilen Sie Ihre Erfahrung mit ! (lesen)

Avertissement :

Merci de ne PAS poster de messages concernant la vente d'un organe et comportant des coordonnées téléphoniques, e-mail, etc. La loi française interdit la vente d'organes.

ICI LONDRES. LES CHIRURGIENS PARLENT AUX CHIRURGIENS. VIDEO DE JUIN 2013 SUR YOUTUBE : http://youtu.be/peHJg4taa1I

La souffrance, enjeu de la médecine et de la "prise en charge"

Directeur du département Sciences Humaines et Economie du cancer, à l'Institut National du Cancer (INCa) Antoine Spire revient sur le colloque qu'il a animé le 29 mai 2006 et dessine quelques pistes pour l'avenir.


Certes, le thème abordé était la place des sciences humaines en cancérologie, non en ce qui concerne les transplantations d'organes. Mais la réflexion d'Antoine Spire, pour peu qu'on l'applique au domaine des transplantations (et plus particulièrement aux problèmes de "prise en charge" de la souffrance des familles de patients atteints de mort encéphalique, de patients en attente de greffe, du personnel soignant, etc.), peut s'avérer très utile. Qu'on en juge :

"Question : Avant ce colloque, vous vous interrogiez sur la place des Sciences Humaines en cancérologie. Etes-vous satisfait de ce qui s'est dit pendant cette journée ?"

"Antoine Spire : Les participants venaient du monde du soin et de la recherche en sciences humaines et il faut souligner que personne n'a contesté l'idée que nous avons à nous occuper des malades et pas d'une maladie, en l'occurrence le cancer. Ce consensus n'allait pas de lui-même. Cela signifie que si la technique est importante, si les protocoles, les procédures sont importantes, la personne du malade est fondamentale.

Il y a eu en France une dérive techniciste, un positivisme médical qui nous a fait privilégier un aspect au détriment d'un autre. Il y a eu aussi une tendance à occulter le sujet qui souffre. Une page doit se tourner. Les Sciences Humaines, avec leurs concepts, doivent permettre de penser le soin autrement. Antoine Lazarus, directeur du département de santé publique à l'hôpital Avicenne a bien résumé l'enjeu quand il a dit qu''une fois que les techniques médicales sont épuisées la médecine commence. Encore faut-il assumer la finitude et l'impuissance de l'acte médical'. Tout est dit et tout commence. La question est : comment la science peut-elle fonctionner dans un métissage adroit avec une réflexion sur l'homme. Ce n'est pas facile, on touche à la pratique des équipes soignantes, mais aussi à la capacité des équipes de recherche en Sciences humaines à apporter leur pertinence et aux malades et aux équipes soignantes. Une chose est sûre : on y arrive tous ensemble. Là aussi, il y a eu un consensus entre les participants.

Question : Il y avait un rêve, au début de cette journée, vous vouliez que la cancérologie devienne 'le lieu géométrique de l'articulation entre médecine et sciences humaines '. Mission accomplie ?

Antoine Spire : Une journée de colloque, même si les échanges ont été francs et directs, ne peut suffire pour un tel objectif. Je retiens que ce lieu, c'est l'INCa. Il est clair qu'il ne sera pas simple de faire changer les mentalités, faire tourner les institutions, je pense aux problèmes liés à la formation des médecins... mais la création de l'INCa permet d'envisager les choses autrement. Il y a un endroit pour penser autrement la vie des patients, penser les souffrances des soignés et des soignants. Nous avons fait un petit pas. Disons que cette journée a permis d'apercevoir le vide qui existe aujourd'hui dans ce que l'on appelle la prise en charge, les problèmes liés au travail, la perte du travail, la reprise de l'emploi mais aussi la famille, l'intimité du malade et du malade guéri mais aussi tout ce qui touche aux conditions d'exercice de la clinique aujourd'hui. Il y a beaucoup à faire. L'INCa, avec les équipes soignantes, avec les chercheurs, doit contribuer à remplir ce vide. Au cours du colloque, Pierre Corvol qui est professeur au collège de France, occupant la chaire de médecine expérimentale, a appelé de ses vœux, une 'médecine personnalisée'. Je crois que l'on ne peut que partager ce souhait et considérer que la route est longue encore."

Source :
www.e-cancer.fr

The Nasty Side of Organ Transplanting : The Cannibalistic Nature of Transplant Medicine

The website http://www.geocities.com/organdonate/index.html shows various "nasty" sides of organ transplant - called "nasty", since they reveal the cannibalistic nature of transplant. A nature we don't want to be reminded of. We'd rather just look at the bright side of transplants: don't they just save people's life? So why show this nasty side ? The medicine transplant community sure cannot be charged with cannibalism. But organ retreaval does mean an intrusion in someone's dying process. This intrusion is necessarily having some consequences for the dying person. Are we so sure the dying patient won't be harmed by this intrusion? Up to date, the international medicine community has not been able to reach an agreement on this question. We cannot reasonably assume we can answer this question for certain. So, if we cut it short: uncertainty regarding the dying patient; however: certainty regarding the patient waiting for a new organ: the transplant could save his life! Why not keep both aspects in mind (uncertainty and certainty), since a transplant means both. Why ?! Well, if we take into account all the people involved, we will have to think also about the dying patient, whose body is trying to die, but who's being kept alive artificially. As puts it an experienced nurse in her testimony (see "The Nurse's tale" below): "After all, he [the dying patient] has been kept alive artificially, and his body has been trying to shut down naturally". Thinking "only" about the patient waiting for a new organ would not be fair, would it?

This website "only" shows the nasty side of organ transplantation (=organ retrieval and grafting), fair enough, but you'd better take a closer look at it all the same, if you want to gain a deeper insight into this whole transplant thing. That's why you'll find below a recap of this web site. You can also download a copy of the book "The Nasty Side of Organ Transplanting" (second edition) as a PDF Doc.

The aim is to make you aware of both sides of organ transplantation: the brighter and (unfortunately) the darker one.

"THE NASTY SIDE OF ORGAN TRANSPLANTING": website recap:

==> "Kidney Donation and Harm to the Donor" (13 May 2006)

Article by Michael Potts, Associate Professor of Philosophy, Methodist College, Fayetteville, NC USA 28311. Published in : http://bmj.bmjjournals.com/

"No one can deny the tragedy of those who die prematurely from kidney failure or live debilitated lives due to complications from dialysis. Although kidney transplantation offers a more effective form of treatment than dialysis, medical personnel must take care not to harm the donor. A recent BMJ editorial (1) calls for more transplant organs (to be better allocated) from two sources: the 'brain dead' and 'non-heart beating donors'."

"Removal of organs for transplant from the 'brain dead' is morally problematic, for it is not at all clear that individuals diagnosed as 'brain dead,' especially under the UK 'brainstem death' criterion, are really dead. These individuals still function as organic wholes at the physiological level, retaining circulatory and respiratory functions (the ventilatory function is taken over by a machine but oxygen and carbon dioxide exchange continue at the cellular and tissue level in just the same way as before) (2). In addition, as Evans (3) and Hill (4) have both noted, it is not clear that the brainstem, much less the rest of the brain, is dead. If such donors are not dead, removing vital organs harms them, violating nonmaleficence.

Removal of organs from 'non-heart beating' donors is morally problematic for other reasons, as Renée Fox (5) notes. 'Treatment' is not oriented toward the patient but toward the goal of preserving organs. Proper comfort care for the dying patient may be omitted because the donor is considered as a repository for organs rather than as a person. The patient may be pronounced 'dead' prematurely after circulatory cessation and the place and timing of its certification may be orchestrated in the interests of the organs to be removed. This is a form of technological death befitting 'things' and not 'persons' in which dying individuals are 'treated' solely on the basis of their utility for others.

Non-heart beating donation may be morally acceptable if the patient receives standard care (as for any other patient dying of the same condition) beforehand, there being no non-therapeutic interventions for the sole purpose of protecting the wanted organs, and if the patient is pronounced dead according to the same circulatory-respiratory criteria applied to other patients in similar situations (and in general use). Then, if warm ischemic time has not been too long for the kidneys to be of use, they may be removed without harming the patient — even then, care must be taken to avoid even a remote potential for the patient to experience distress. Only when no harm is done can the removal of organs from donors be considered morally justifiable."

(1) Geddes CC and Roger RSC. Kidneys for transplant: more of them, better allocated (editorial). BMJ, doi:10.1136/bmj.38833.785984.47 (published 27 April 2006; accessed 11 May 2006).

(2) Potts M. A requiem for whole brain death: a response to D. Alan Shewmon’s ‘The brain and somatic integration.’ J. Med. Phil. 2001;26:479- 91.

(3) Evans DW. The demise of ‘brain death’ in Britain" In Beyond Brain Death: The Case Against Brain Based Criteria for Human Death, ed. M Potts, PA Byrne, and RG Nilges, pp. 139-58. Dordrecht, The Netherlands: Kluwer Academic Publishers, 2000.

(4) Hill DJ. Brain stem death: a United Kingdom anaesthetist’s view. In Beyond Brain Death: The Case Against Brain Based Criteria for Human Death, ed. M Potts, PA Byrne, and RG Nilges, pp. 159-69. Dordrecht, The Netherlands: Kluwer Academic Publishers, 2000.

(5) Fox RC. An ignoble form of cannibalism’: Reflections on the Pittsburgh Protocol for procuring organs from non-heart-beating cadavers," Kennedy Inst of Ethics J 1993;3: 231-39.
Competing interests: None declared

Source :
http://bmj.bmjjournals.com/cgi/eletters?lookup=by_date&days=14#132141

==> Here is a testimony from an experienced nurse, highly polemic as well :

"The Nurse’s Tale"

"Transplant coordinators and donation agencies never tire of emphasising that the donor family’s loved ones will be treated with dignity and respect. It is a comfort to think unaffected people with a higher cause dismantle the bodies. But an American nurse who has worked thirteen years in the transplant field in the United States says :"

"The families are led to believe they are doing such a noble and wonderful thing by donating their loved ones organs. I tend to believe, in their moment of grief, they are not thinking clearly. This is what happens.

A patient is declared brain dead. The family gives consent to remove organs/tissue/etc. This body is trying to 'die', but we keep it alive artificially till suitable donors can be found. Sometimes this can take many hours, as precise tissue matches are not always at the ready. Meanwhile, the body is deteriorating.

My role in all this was waiting in the operating room. 'Are they ready to start this retrieval yet? No, they can't find anybody to take the heart (just an example).' So when they finally do find a recipient, teams come in from various parts of the country to harvest the various organs. The patient is brought to the operating room, and the procedure is begun. The heart is removed first, followed by the other organs. Sometimes an organ is not taken because there was no recipient, or it is taken just for research. Occasionally an organ is deemed unusable due to a disease process. Immediately after the organs are removed, the various doctors whisk them away in coolers, never giving a thought to the person who just died or the grieving family. They have no idea of even the person's name. So one by one, these ghouls leave the operating room till all that is left is the body, laying WIDE open, quiet, and cold, and the nurses.

Usually some underling of a resident is left to sew the body shut. It is a hideous sight. And the smell of death is starting to permeate the room. Nauseating! So the body is closed, and that doctor leaves and all we have is the body and the nurses. It's left up to the nurses to clean up one holy hell of a mess, and take care of this body that has been defiled and forgotten. We must pull all the various tubes and lines out of the body to make it presentable for the family. As the tubes are pulled out, this horrible stench exudes from the depths of this former person. After all, he has been kept alive artificially, and his body has been trying to shut down naturally. (...). Sorry to sound so glum, but I can't help but think if families could see how their loved ones were treated, they would never consent to the taking of organs."

Source:
http://www.geocities.com/organdonate/AAACh7TheNursesTale.html

==> "Does it matter that organ donors are not dead? Ethical and policy implications."

Article by Potts M (1), Evans DW (2). (1)Philosophy and Religion Department, Methodist College, Fayetteville, NC 28311-1498, USA ; (2) Dr. David Wainwright Evans, Cardiologist, Queens College, Cambridge, United Kingdom (retired physician):


"The 'standard position' on organ donation is that the donor must be dead in order for vital organs to be removed, a position with which we agree. Recently, Robert Truog and Walter Robinson have argued that (1) brain death is not death, and (2) even though "brain dead" patients are not dead, it is morally acceptable to remove vital organs from those patients. We accept and defend their claim that brain death is not death, and we argue against both the US 'whole brain' criterion and the UK 'brain stem' criterion. Then we answer their arguments in favour of removing vital organs from 'brain dead' and other classes of comatose patients. We dispute their claim that the removal of vital organs is morally equivalent to 'letting nature take its course', arguing that, unlike 'allowing to die', it is the removal of vital organs that kills the patient, not his or her disease or injury. Then, we argue that removing vital organs from living patients is immoral and contrary to the nature of medical practice. Finally, we offer practical suggestions for changing public policy on organ transplantation."

Source:
http://www.ncbi.nlm.nih.gov/

==> "Brain death is a recent invention":

Article by Dr. David Wainwright Evans, Cardiologist, Queens College, Cambridge, United Kingdom (retired physician): BMJ 2002;325:598 ( 14 September ) : click here.

==> Download full book (PDF Version) : click here.

Organtransplantation in Deutschland und in Europa. Das Herztod-Kriterium

Website von Joachim Felix Hornung (Freie Universität Berlin): "Organtransplantation in Deutschland und in Europa. Das Herztod-Kriterium".

"Auf dieser Seite sind verschiedene Materialien zusammengestellt, die die unterschiedlichen Regelungen zur Organtransplantation in den europäischen Ländern betreffen. Dabei geht es um die folgenden Fragen :

a) Welche Gesetze treffen für mich zu, wenn ich mich im europäischen Ausland aufhalte?

b) In welchen Ländern haben die Angehörigen ein Entscheidungsrecht und in welchen nicht?

c) In welchen Ländern gilt neben dem Hirntod-Kriterium auch das (äusserst problematische) Herztod-Kriterium? Und was bedeutet dieses?"

Website Organtransplantation in Deutschland und in Europa. Das Herztod-Kriterium : bitte klicken Sie hier.

Quelle / Source:
http://www.infolanz.com

Approches de la fin de vie et de la mort en réanimation

L' espace éthique de l'AP-HP propose des dossiers d'actualité.

"Approches de la fin de vie et de la mort en réanimation" :

Ce dossier thématique a été réalisé par l'Espace Ethique de l'AP-HP :

http://www.espace-ethique.org/fr/accueil.php

Télécharger le dossier sur le site de l'Espace Ethique de l'AP-HP :
==> cliquer ici.

Télécharger directement ce dossier sous forme de document PDF:
==> cliquer ici.

Lire les pages 17-20 de ce dossier, concernant la prise en charge des proches de patients décédés ou en état de mort imminente, par le psychanalyste Guy Benamozig, psychanalyste-anthropologue, unité de neuroanesthésie-réanimation, groupe hospitalier de la Pitié-Salpêtrière, AP-HP.

Source :
http://www.espace-ethique.org/fr/accueil.php

Organ “Harvesting” Policy in Canada to Allow Terminal Patients to be Killed for Parts?

TORONTO, September 16, 2005 (LifeSiteNews.com) - "Before the practice of organ donation and transplants began, the definition of death was not very difficult. If a person had no signs of life, if his brain, heart and other organs had ceased to show any activity, he was dead. But in the age of transplants and 'miraculous' resuscitation, what constitutes death has become a controversial issue. Increasingly, the need to wait until the patient is no longer using his organs, is being overlooked in the rush to get fresh organs to transplant patients. The longer a donor has been dead, the less likely a donated organ will be to 'take' in a recipient’s body."

"Coupled with the erosion of the value of life from abortion and the rise of euthanasia, assisted suicide and related 'end of life' issues, medical ethics is moving more and more into a dangerous grey area. From less-developed countries, it is becoming more common to hear news reports, horror stories, of patients having their organs 'harvested' without permission and of poor and marginalized persons being killed for their organs.

Now Canada, always keeping in the forefront of such 'developments' in post-modern medical ethics, is considering changing the rules for organ donation to allow organs to be removed after cardiac arrest after life support has been withdrawn. This has some concerned that terminal patients and non-terminal disabled will be prematurely 'unhooked' in order to procure organs for transplant. Walter Glannon, a clinical ethicist at the Children’s and Women’s Health Centre in Vancouver said, 'The concern is that the removal of organs for transplant will take precedence over the (donor) patient.'

'Life support,' he said, 'may be removed prematurely, without going through the medical and ethical protocol.'

The recommendation, by the Canadian Council for Donation and Transplantation, would have Canada join other countries that are expanding the limits of 'ethics' in organ transplants. Dr. Michael DeVita, a critical care physician at UPMC Presbyterian Hospital in Pittsburgh, quoted in today’s National Post, says, 'It gets worse when you’re going to withdraw life support and then procure organs. People get more and more concerned that you’re going to be caring for people who are dying inappropriately just to get at their organs.'

The problem is compounded when the definition of 'life support' includes food and water, as was the case with Terri Schiavo. In Canada, the medical community considers nutrition and hydration taken by some means other than by mouth, through an abdominal tube for example, to be 'extraordinary' means of life support. The practice of passive euthanasia by starvation and dehydration is not uncommon in Canada and the US but it is nearly impossible to obtain reliable statistics."

HEART TRANSPLANTS: IS BRAIN DEATH REAL DEATH?
http://www.lifesite.net/ldn/1999/mar/99030301.html

Commentary on the address by Pope John Paul II to the participants in the International Congress on "Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas" (March 20, 2004)
http://www.lifesite.net/ldn/2004/apr/040420b.html

GOV'T MAY PRESSURE CANADIANS TO DONATE THEIR ORGANS
http://www.lifesite.net/ldn/1999/april/99042301.html

Source :
LifeSiteNews.com
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