Scientific MOOCs follower. Author of Airpocalypse, a techno-medical thriller (Out Summer 2017)


Welcome to the digital era of biology (and to this modest blog I started in early 2005).

To cure many diseases, like cancer or cystic fibrosis, we will need to target genes (mutations, for ex.), not organs! I am convinced that the future of replacement medicine (organ transplant) is genomics (the science of the human genome). In 10 years we will be replacing (modifying) genes; not organs!


Anticipating the $100 genome era and the P4™ medicine revolution. P4 Medicine (Predictive, Personalized, Preventive, & Participatory): Catalyzing a Revolution from Reactive to Proactive Medicine.


I am an early adopter of scientific MOOCs. I've earned myself four MIT digital diplomas: 7.00x, 7.28x1, 7.28.x2 and 7QBWx. Instructor of 7.00x: Eric Lander PhD.

Upcoming books: Airpocalypse, a medical thriller (action taking place in Beijing) 2017; Jesus CRISPR Superstar, a sci-fi -- French title: La Passion du CRISPR (2018).

I love Genomics. Would you rather donate your data, or... your vital organs? Imagine all the people sharing their data...

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).


Regret consenting to donation: 2 testimonies (USA)

This testimony, by Bernice Jones, can be found at : "My little corner of the world". A morally devastated "donor mom" reveals her doubts about "brain death", feels like she has been deceived by the transplant medicine community, and, having agreed to the organ harvesting on her child, wonders if she did not let go of her child at a time when this child would have needed her protection more than ever.


Voici le témoignage d'une mère ayant accepté de donner les organes de son enfant en état de mort encéphalique. Elle se sent finalement trahie par le corps médical, persuadée de n'avoir pas pris la bonne décision, d'avoir été manipulée, d'avoir abandonné son enfant au pire moment. Le ton est émotionnel, polémique.


"The deception is horrible. Those that are in the state of shock and are completely trusting of the physician and staff to preserve, protect and prolong the life of their loved one is defiled. A physician - one who heals - does everything to protect and prolong the life of their patient - don't they? In the event of an emergency and trauma, when the life of a loved one hangs in the balance, what choice does the family of the injured loved one have?"

"I had no idea there were those that would put the honored title of 'Doctor' before their name and disgrace themselves and the medical profession in general with such vile acts of immorality! It is legal, of course, to pronounce one dead when in fact alive. It is legal to dissect one to death - excising even the beating heart! It is legal to treat a patient as a mere object of fresh vital organs in stead of a patient in need of medical treatment, care and compassion to preserve the injured person's life - not the preservation of his/her organs for harvesting for the life of another!

Legal? Yes! Medically acceptable? Socially acceptable? Yes! For as long as the truth remains withheld from the general public and every effort is made in a continuance to perpetuate the myth of one having all signs of life - VITAL FUNCTIONS - and be dead at the same time, people remain - out of shear ignorance and having been deceived - will continue to submit their bodies and those of their loved ones to this excruciatingly painful procedure as an 'organ donor' and dissected to death! This is a crime! It is a an atrocity!

When I first began researching 'brain death' I was appauled by the various definitions. Uniform redefinition of death? Apparently, since there are no laws or moral boundaries governing this coined term it remains solely the opinion of the attending physician. The definition of death continues to expand and expand to achieve death. Within the law there are no provisions for ones faith, rather, open-ended, loose guidlines that allow 'brain death' to be a prognosis as there is clearly not diagnosis! 'Brain death' was establised for the sake the convenience of a timed, planned death.

However, it also remains to be a controversy due to this as well! Thankfully there remain those in the medical field that regard human life as sacred and would do nothing to harm their patient. There remain true physicians that will 'do no harm' even when a patient is presumed to be near death. Killing is not an option - not in the name of 'mercy' or any other name. Truly, for the physician with integrity, based on sound moral principals, life is from conception until natural death! VITAL SIGNS remain to be just that - their patient's SIGNS OF LIFE!

I am very narrow minded. I refuse to compromise truth. 'Brain death' - the redefining of death - is the means in which to jusify the end results - organ transplantation. It is simply a utilitarian philosophy that has been well articulated and propogated. This has been exceedingly successful in promoting death as a cure. It seems to be the icon of our current 'culture of death' as it has been through this developed, established means to end the lives of those deemed to have 'died anyway,' those whose lives in which do not meet the current standard of worthiness or 'quality of life' and are tactfully dehumanized as they are labeled 'donor' and no longer considered a LIVING PERSON.

It is simply amazing. Through a maze of intellicual verbage and after more than forty years we have a distored, twisted and demoralized the view of human life. All of our institutions reflect this morbid concenses that has become readily adapted and has had fatal concequences. This was the intent was it not?

Had I not been in such a state of shock, had I been of 'sound mind,' had I the knowledge I now have of the history of organ transplantation and the invention of the coined term 'brain death,' I would not have been deceived. I most assuredly would not have the title of 'donor mom' - a title of disgrace, guilt, remorse and pain that I now have."
(...)
A testimony by Bernice Jones

Source:
http://forums.delphiforums.com/corner2/start

Another testimony, by the author of the website: "My little corner of the world":


Le témoignage suivant est de l'auteur du site "My little corner of the world". Parents d'un garçon de 18 ans, Kathy Oak et son mari regrettent après-coup leur décision d'avoir consenti à donner les organes de leur fils qui s'est retrouvé en état de mort encéphalique, suite à un accident de voiture. Ils estiment avoir été manipulés, pour eux les familles de donneurs sont maintenues dans le flou d'une communication qu'on peut difficilement qualifier d'honnête. Il s'agit pour le corps médical d'obtenir les organes à tout prix, non de présenter les très dures réalités que recouvre le terme de "don" d'organes, à savoir : les parents doivent abandonner leur enfant mourant et laisser les équipes chirurgicales prélever ses organes, ce qui bien entendu signera la mort de leur enfant. On est dans la violence et la transgression, voire le sacrifice, bien plus que dans le don, selon Kathy Oak, qui parle au nom de sa propre expérience. Aujourd'hui, elle veut s'assurer que les parents qui consentent au don d'organes de leur enfant soient informés de ces réalités, et non laissés dans l'ignorance, manipulés par un discours visant à tout banaliser, pourvu que les parents acceptent le prélèvement, quitte à le regretter après ...


"Nobody seems to want to hear about people like me who regret consenting to donate a loved one's organs and would, if only I could, take the decision back. In my case, the loved one was my 18-year-old son who was declared brain-dead after a car accident in October, 2001. My husband and I were told nothing at all about the special tests that are supposed to be done to confirm brain death, and there is nothing I can see in the 'required request' law that protects shocked and grieving families from being taken advantage of. After carrying the organ donor icon on our driver's licenses for many years, my husband and I no longer do, nor would we ever accept an organ transplant now that we know how poorly donor families can be treated. We would not wish this added grief on anyone anymore than we would wish for anyone to need an organ transplant. It's all about getting the organs, getting the organs, getting the organs. Now I feel like we were brain-washed by all the pro-organ-donation hype we were exposed to over the years. If those who work in organ procurement were honest, they would tell you that the hardest thing you will ever be asked to do is walk away from your child--leave the hospital--while your child is still on life support, still has a heartbeat. Brain death is controversial enough that everybody should know this upfront. It should not be up to a few select people to decide for all of humanity that organ donation is the only right thing to do. I also didn't know until after the fact that brain death accounts for only 1 percent of all deaths, which means that the overwhelming majority of people never have and never will experience the brain death of anyone they loved and will never understand how much less closure there is. The whole thing leaves me wondering if it's really altruism or ignorance that compels most organ donation, and more should be done to make sure it's not the latter."

DonorMom

Source:
http://www.kidney.org/

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