Airpocalypse, thriller techno-médical, à paraître cet été

Découvrez Airpocalypse, thriller techno-médical, à paraître cet été (version française). Editeur: Hachette/Iggy Book, support Kindle.

Découvrez #Airpocalypse thriller techno-médical, à paraître cet été (VF) Editeur Hachette/Iggy Book, support Kindle https://t.co/lT04pBJA8N pic.twitter.com/qUZhNlzbuJ

— CATHERINE COSTE (@cathcoste) 26 juin 2017

Welcome

cath.coste@gmail.com

My LinkedIn
Twitter: @cathcoste and @DnaCowgirl
My Facebook
My Facebook as DNA cowgirl

Freelance writer. All things genomics (fiction and non-fiction)

MITx 7.00x, 7.QBWx, 7.28x (part 1 & 2) certified (2013-2016)
Currently interested in bioinformatics (genomics & python)
Post-graduate teacher training (German literature & civilisation, 2008)

My 80 bioethics chronicles (French) 
Mes 80 chroniques bioéthiques sur Agoravox

If I had a singing clone, it would be Pi Ja Ma (radio girl)



My motivation, as explained to Chinese sci-fi rockstar writer Liu Cixin -- Three Body Trilogy (books and movie)...

Following MIT #MOOCs in the hope to find a job in #genomics is like climbing a mountain in the hope to discover a fish pond at the summit ;) pic.twitter.com/Mcm4y0W1r5

— CATHERINE COSTE (@cathcoste) June 4, 2017

Airpocalypse, a techno-medical thriller

From Red Khmers to Green Khmers? Will ecological utopia take over the communist utopia in China? Airpocalypse, my techno-medical thriller, will be out this summer (French version)

After physician assistant Mia's change of heart in Paris (her boss is harvesting hearts from Chinese prisoners), she will be the heart of change in Beijing, where scientists are reengineering the genome of humans to treat diseases, and algae's DNA to treat pollution.  Algae biofuels could be the low-emission fuel of the future. CRISPR, that cool genome editing tool, can also re-write geopolitics. Biology and I.T. have merged, but what will save Mia’s life in Xinjiang, a Muslim Chinese province? Yin, or Yang, or their reunion? Cutting or restriction enzymes in a democrature (mix of democracy and dictatorship) like China are not only cutting through DNA molecules. Lenoir, Mia’s ex-boss, is also in Beijing. After his bloody harvest in China, he will need to use CRISPR as a minimally invasive surgical tool to save the life of his ex-assistant. Maybe the perfect Yin Yang is when the irony of death is meeting with the irony of life?

Follow me on twitter: @cathcoste

https://twitter.com/cathcoste

Vers une démonétisation et dématérialisation du diagnostic médical ?

Ce matin, sur mon mur Facebook

Et vous, vous en pensez quoi ? N'hésitez pas à venir commenter sur ma page Facebook, ou sur mon compte twitter: @cathcoste

I'm The Real Girl Behind @cathcoste On Twitter

For those who would like to know who i am (what i do) and what motivates me, i wrote this little article on my antiquated blog:

https://youtu.be/OPa2eVH934g

Doing #karaoke in #Asia on a regular basis. Here, this was a pun (i'm a 🐒) for my Chinese family ❤️ 900 views of this video 😂 😂  https://t.co/sosr2hbHtt

— CATHERINE COSTE (@cathcoste) June 11, 2017

First of all, i only take selfies when trying to wake-up (this is yesterday's selfie), and i'm quite obsessed with my nose which i don't like (had nose surgery when i was too young, would need another surgery now. Dunno about that though)

I used to be a teacher in middle and high school (foreign languages), and an executive assistant (or marketing), i'm almost fifty, and now working in real estate in Southern France (Pau). In my free time, i enjoy learning stuff, so i earned myself several MITx MOOCs certificates in biology and genomics. Also, i love writing fiction. Nobody can understand why i write science-fiction (my culture in sci-fi is almost non-existant), but i just finished writing a techno-medical thriller, action taking place in China ("Airpocalypse") and would like to write "made-in-China" sci-fi. My co-writer Isa and myself are trying to finish another sci-fi, Jesus CRISPR Superstar, French title: La Passion du CRISPR.

I have a great family, scattered around the world (France, NY, Malaysia), spending a lot of time interacting with those folks.

My husband keeps motivating me, he is my learn-new-things coach, so i'm now getting ready for third part of MITx Molecular Biology MOOC: Translation. After that, i'd like to learn more about bioinformatics and precision medicine...

I live in Pau (Southern France) and since i love Asia, getting ready for a 3-months-stay in Japan (spent a lot of time in China last year)... Since i'm interested in science people, twitter is a great way to build a virtual network allowing me to get updates about stuff i enjoy learning and writing about. When i was a teenager, i wanted to become a dancer, a choreographer, a surgeon or a writer. Nine fictional pieces in progress; some of them i write alone, some with the help of a co-writer...

I'm afraid there's nothing else to say (probably too busy retweeting scientific stuff).

De nos jours, tout semble en marche, même la campagne pour le don d'organes

Don de rein post-mortem, don de rein de son vivant. Vers un changement de paradigme ? Le rein est l'organe le plus demandé au monde. Pourtant, le don de rein de son vivant peine à décoller en France. Aux manettes de ce changement d'ère, un acteur français connu, et sa soeur. Petit décryptage ...

Après les campagnes ADOT ayant la finesse de Game of Thrones (c'est drôle dans la fiction, mais quand le drame vous touche dans la vie, peut-être nettement moins), voici poindre une campagne d'un genre nouveau, orchestrée par les anti-donneurs de leçon Richard Berry et sa soeur Marie Berry, tout en finesse. Je n'ai qu'un mot à dire : bravo. Jugez par vous-mêmes.

Mur FB de Marie Berry, 21 juin 2017

J'ai eu l'occasion de croiser Marie Berry à plusieurs reprises, elle m'a toujours impressionnée. Dans le bon sens. Tandis que les conquistadors de France Adot, héros malgré eux de la "wacky science" ... euh, c'est quoi, la mort encéphalique ? Je vous offre quelques cours sur ce sujet, faits par la Harvard Medical School ? La science de la mort encéphalique est tout sauf bordée, dommage, tout le don d'organes dit "post mortem" repose dessus ... Les toubibs institutionnels n'aiment pas trop qu'on les chatouille sur ces sujets. Et Big Pharma paie pour les campagnes d'"information" sur le don d'organes (les vendeurs d'immunosuppresseurs) ...

Bref, le monde tournait un peu en rond tout en faisant son beurre, comme d'habitude, avec quelques zélotes du "Don" ... Science et religion mis en baratte, t'inquiète pas, j'fais mon beurre ...

Et puis, mort du pionnier de la greffe cardiaque Christian Cabrol, dont les "insiders" savent qu'il n'était pas très favorable au don d'organe de son vivant. Or le rein est l'organe le plus demandé au monde. Il peut se donner de son vivant, la preuve ... Pour le vieux Cabrol (grand homme par ailleurs), point de salut hors du don d'organes dit "post-mortem" (euh, les organes d'un mort ne sauvent personne, mais ceux d'un mourant, cela se pourrait) ... vous voyez un peu la ligne grise qui se profile à l'horizon ? Cabrol (RIP) et consorts n'aimaient point que l'on parle de cette ligne grise, pourtant évoquée dans les cénacles de chirurgiens transplanteurs débattant entre eux ... Eh oui, ce modeste blog n'a rien inventé, il ne fait que recycler ...

Bravo le frère et la soeur, beau tandem tout en finesse, vous redonnez de l'espoir et du sens à ce genre d'initiative : la campagne pour le don d'organes. Ce qui, pour moi qui ai démarré ce modeste blog en 2005 afin de donner l'alerte sur les campagnes d'"information" biaisées, n'est pas un vain mot ...

Pouvait-on imaginer plus bel hommage à Cabrol, le pionnier de la greffe en Europe, que cette salutaire mise en marche de la campagne du don d'organes par le tandem Berry ? Ainsi que je le disais, jugez par vous-mêmes.

An open letter to my Regina Holliday jacket

A few years ago, Regina Holliday, yes the famous US health care activist, painted this jacket for me. Dying Steve Jobs: "IT and biology have merged. Time to learn about it." I was a middle and high school German teacher, and an executive assistant in "big corporate". Trying to learn the lesson, i earned myself 4 biology MIT MOOC certificates (working on a fifth one)

Dear jacket,

Who would go attending health care congresses, boasting around, wearing you, saying something like "I represent dying Steve Jobs and I learned biology at MIT" (and i'm full of shit)? Thanks, but no thanks. Miss me with the bloody hype. Those MITx MOOC courses on EdX are providing a great hype filter, by the way, you were right, dear jacket.

The reason i met with this famous transplant patient, a cancer patient, had nothing to do with mHealth hype. It had to do with intelligence regarding brain death science and organ trafficking in China. It encompassed geopolitical stuff, surgical stuff, and human rights. We are talking about China, aren't we, dear jacket? Not wanting to be manipulated, i (wearing you) went to see my former professor of Geopolitics, Jean-Christophe Victor. Discussed with him what i had told the patient who is painted on your back, dear jacket, seeking advice. Wanting to stay under the radar, i thought studying biology and genomics with you and earning ourselves MITx MOOC certificates would compensate for Regina's painting efforts and generosity. And you too, dear jacket, thought this was a great idea. Oh, we got on so well together, didn't we? We had so much fun learning about digitised biology. It wasn't always easy, though. There were days i wasn't quite sure if you were a congress uniform (business smart dress code) or a zip-up sweatshirt.

Turns out me and my jacket, we didn't get "touched" by airpocalypse in Beijing a couple of years ago; i'm afraid it's the opposite. Both of us could "touch" that thick, polluted air with our fingers instead, when travelling to Beijing (that human rights activist thing, remember?). 

The whole thing must have been brewing inside me, a modest blogger and MOOC student, for some time, though, I guess. Flashback of people being slaughtered for their organs (yes, i had witnessed such things in China, having worked for surgeons), air pollution killing people, the arrogance of power (some establishment doctors: transplant surgeons, and other VIPs) showing too little concern about human rights in China (great source of transplantable organs, worldwide)... Both of us, as you know only too well, dear jacket, started writing (we had just completed MITx MOOC 7.28.x part 2 and we were exhausted, but never mind that) and refused to move from that Beijing airport (leaving China) without first talking to Beijing authorities. It was in winter 2015, do you remember? Neither of us was fluent in Mandarin Chinese, far from that, but after three or four days spent at Beijing airport (which we now know like the back of our hands: showers, restrooms, water dispensers for Instant Noodles, etc), we finally managed to speak to someone. In a mix of broken Mandarin Chinese and English, we both did our best to explain we were MITx students and had things to tell regarding geopolitics in China. All you remember from this period is me as a nervous wreck, refusing to admit i would be blocked from going to China because i had worked with Canadian human right activists who had accused the government of crime against humanity (human organ trafficking with the complicity of Chinese army). At this point i must thank you for your help. You successfully conveyed the message to Beijing authorities that we were both scientists (MITx students) willing to help Chinese people get excited about science, synthetic biology, CRISPR, genomic precision medicine and the potential of this new science to battle air pollution and cancer. I (fashion-) showed you to Chinese politicians, and little by little the craziness of the situation settled down. Police told us they wanted to hear what we had to say because they thought we both were very sick (true, duh, that pollution thing). The incident was "settled" (no money involved, only good will from all parties), and somehow (i will never pretend i understand what is going on in China and how networking kind of works there), we managed to build a small network, explaining we wanted to write "made-in-China" science-fiction. Even more determined than when learning for those MITx MOOCs, we settled to work and imagined the story we would both write. Yup. My jacket is my dear co-writer. Thank you for that, jacket. You were a great co-writer. We have come up with a 300-page-fiction (PDF), getting ready to be published as a book (French, Chinese, English). Congratulations, trilingual jacket! You made it ;-) What helped us through the ordeal is our Chinese network (businessmen, students, scientists from academia, all of them great fan of yours, dear jacket), and our passion for made-in-China science-fiction. 

When you find yourself not being able to breathe, and see others suffer around you, you come to think that there must be more to a bloody congress uniform painted by Regina than just hype, mHealth yada yada yada. Wouldn't you agree, dear jacket?

I am fully aware, dear Jacket, that writing this techno-medical thriller, "Airpocalypse", is certainly not the task that was assigned to us by Regina. We both had to agree very early on one strategy: head off the beaten path. Speaking of which, dear jacket: wouldn't you agree? This maybe was the hardest part.

"Airpocalypse", our first techno-medical thriller, will be out this summer, French version. English and Chinese versions will follow...
"Find out what it is that touches you most deeply. Pursue it, learn about it, explore it, expand on it. Live with it and nurture it."
Surviving this accident (famous Nimoy quote hit us like a train, i'm afraid), we just know one thing: we've been through hard things in China, saw traumatic stuff, have been to dark (and dirty) places, so please, let us learn and write in peace. Dear jacket, thanks for proving to me that we ain't no circus animal and that the agenda is ours.

Mon projet de chroniques bioéthiques bilingues

Ce que je pourrais faire en complément des tweets coups de poing et du polar "Airpocalypse", fini à présent (on en est à des trucs de relecture et de mise en page) : ce serait d'occuper le terrain des chroniques bioéthiques, comme j'ai fait sur Agoravox (81 articles publiés en français par le passé) ; cette fois-ci plutôt sur Medium, et en deux langues (français et anglais). Je n'ai pas commencé du tout. Mais un article par semaine, ce serait bien.

https://medium.com/@cathcoste

Sur Medium, entre autres, parler de l'hyper-compétitivité qui est la tare héréditaire du milieu scientifique (microbiologistes et chirurgiens et autres chercheurs) et qui bloque encore et toujours l'initiative visant à amener le patient en charge de ses données (le biz plan "Portable Genomics") comme acteur au centre du parcours de santé. Et analyser les autre blocages. Bref, être plus dans le fond documenté, et les amorces de solution : participer à la création de solutions nouvelles, pas qu'à la destruction des anciennes.

Donc, s'organiser pour faire un article par semaine. Ce sera moins concentré et documenté que les chroniques e-santé de Jean-Michel Billaut, ne rêvez pas ;-) ;-)

Aussi, écrire une comédie "French Tech", mettant en scène un startupeur biologiste français dont le biz plan est de rester en Californie, et une étudiante de MOOCs en biologie, qui veut écrire de la science-fiction et est passionnée d'Asie. Tandem improbable que ces deux-là ; mais une passion commune : l'avenir de la médecine.

Voilà ce que je voudrais faire à l'avenir, et continuer à apprendre le Chinois, car ai l'intuition que la "genomic precision medicine" va aussi s'écrire en chinois et que ce sera passionnant ...

DNA cowgirl

R.I.P. Christian Cabrol

Décès du Professeur Christian Cabrol, pionnier de la greffe cardiaque https://t.co/5ypn9cqsqF pic.twitter.com/hqDsYDXwED

— Sciences et Avenir (@Sciences_Avenir) June 16, 2017

http://www.lavoixdunord.fr/178938/article/2017-06-16/deces-du-professeur-christian-cabrol-pionnier-de-la-greffe-cardiaque

Genetics and Law in France - Loi et Génétique en France

Sur une idée de P. Merel, Portable Genomics

Que dit la loi ? What does the law say?

"Le Parlement français a également introduit une nouvelle disposition pénale, punissant toute tentative de solliciter un examen des caractéristiques génétiques pour soi-même ou pour une personne pour qui l'un est légalement responsable en l'absence d'une prescription médicale avec une amende de 3 750 euros. En interdisant cette pratique, le parlement français cherche à protéger les personnes contre le développement de tests génétiques disponibles sur Internet, dont la fiabilité et la qualité sont contestées par tous les professionnels."

"Effectuer un examen des caractéristiques génétiques d'une personne à des fins autres que la recherche médicale ou scientifique, sans avoir obtenu le consentement préalable de la personne, ou utiliser des informations recueillies à propos d'une personne à des fins autres que la recherche médicale ou scientifique, constituent des infractions pénales."

"The French parliament has also introduced a new criminal disposition, punishing any attempt to solicit an examination of genetic characteristics for oneself or for a person for whom one is legally responsible in the absence of a medical prescription with a €3,750 fine. By banning this practice, the French parliament is seeking to protect people against the development of genetic tests available on the Internet, the reliability and quality of which are contested by all professionals."

"Carrying out an examination of the genetic characteristics of a person for purposes other than medical or scientific research, without having obtained the person’s prior consent, or making use of information collected about a person for purposes other than medical or scientific research, are criminal offences."

La loi si je comprends bien dit donc en gros deux choses : pas le droit de faire séquencer mon génome de ma propre initiative, et toute personne détournant mes données génétiques est un criminel.

Ce n'est pas possible de se faire sequencer en France (de sa propre initiative). Mais si on commande à l’étranger ?

La loi ne dit pas grand chose la-dessus, mais c’est pourquoi aucun fournisseur n’a tenté de s’installer en France.

Imaginez une app (App) qui vous permette de naviguer dans vos données génétiques sur iTunes et vous permette de partager vos données médico-génétiques avec qui vous voulez, même de les monétiser et de participer à des études "pharma". Donc notre App pourrait se connecter chez n’importe quel fournisseur dans le monde et rapatrier les données chez les patients eux-mêmes.

La loi ne fait pas trop de distinction entre consentement et contrat.

Quand on commande un séquençage génétique à 23andMe, c’est un contrat, on n’est pas obligé de signer leur consentement à partager nos données. Donc du coup, sans consentement, il y a ces 15.000 € d’amende qui planent, mais sur qui ? le patient ? le fournisseur ? pas clair.

The law, if I understand it correctly, basically says two things: I am not allowed to order a sequencing of my genome on my own initiative, and anyone taking advantage of my genetic data (without my consent) is a criminal.

It is not possible to be sequenced in France (on our own initiative). But what if we order a DNA test abroad?

The law does not say too much about it, but that is why no supplier has tried to settle in France.

Imagine an App that allows you to browse your genetic data on iTunes and allows you to share your medico-genetic data with whomever you want, even monetize them and participate in "pharma" studies. So this App could connect to any provider in the world and repatriate the data to the patients (App clients) themselves.

The law does not make a clear distinction between consent and contract.

When ordering a genetic sequencing at 23andMe, it is a contract, we do not have to sign their consent to share our data. So suddenly, without consent, there are those 15,000 € fine looming over us, but, wait a minute, who is that "us"? the patient ? the supplier ? not clear.

Les textes de loi :
Law texts:

version intiale 2004:
Initial version 2004:

https://www.legifrance.gouv.fr/affichTexte.do?cidTexte=JORFTEXT000000441469&categorieLien=id

version actuelle 2017:

Current Law (2017):

https://www.legifrance.gouv.fr/affichTexte.do?cidTexte=JORFTEXT000000441469&dateTexte=20170605

TITRE II : DROITS DE LA PERSONNE ET CARACTÉRISTIQUES GÉNÉTIQUES.

exemple:

2° L’article 226-25 est ainsi rédigé :

« Art. 226-25. - Le fait de procéder à l’examen des caractéristiques génétiques d’une personne à des fins autres que médicales ou de recherche scientifique, ou à des fins médicales ou de recherche scientifique, sans avoir recueilli préalablement son consentement dans les conditions prévues par l’article 16-10 du code civil, est puni d’un an d’emprisonnement et de 15 000 EUR d’amende. » 

TITLE II: RIGHTS OF THE PERSON AND GENETIC CHARACTERISTICS.

example:

(2) Article 226-25 shall be worded as follows:

"Art. 226-25. - The examination of the genetic characteristics of a person for purposes other than medical or scientific research, or for medical or scientific research purposes, without the prior consent of the person concerned, Article 16-10 of the Civil Code, is punishable by one year's imprisonment and a fine of 15,000 EUR. "

My two cents (sorry, i spent too much time in Asia and too little in Europe):