New Chinese Research - modification of human germ-line genes

And before anyone asks me anymore questions about the ethics or the potential dangers, look it up yourself. I for one, cannot understand how anyone can be so damn blind as those who have commented here. There are people who need actual help and I am not going to waste my time on this. The international consensus was established long before CAF or I made any comment supporting it, so take your ignorance and anger and go find out for yourselves. CAF mentioned U.S. regulatory guidelines because CAF is a US org, not because this consensus was created by the US, alone. This is a true international consensus that the Chinese have violated. You're free to disagree with the consensus but at least do the world a favor and find out why this consensus exists, before you so callously dismiss it.
This is one of the most selfish statements I have ever read. The lack of empathy for future generations is as callous as it comes.

How far we should restrict the current generation in the interest of future generations would be an interesting topic to debate. For me personally, it's tough to decide when I have to weigh something like the 'future of humanity' against the suffering of people who are alive or born during my own life time, because the latter is something that is actually able to affect me in an emotional way while the former is not.

Screw the future if it might and I mean a very strong might, help someone alive today. I find that attitude to be beyond selfish. A lack of empathy for future generations is also found in those willingly destroying our planet for today's profits.

If I seem angry, I am. I find the immense selfishness exhibited by some to be plain disgusting. I would suggest fully researching this topic before making anymore comments on it. I have already had one member of our Facebook group let me know they were leaving because of this issue. That is that person's choice and if others here choose to follow, that is their choice.

If one of you is willing to volunteer your own child to be the first human test subject, let the Chinese know.

Andy for gods sake have mercy on me and let me explain my side. There has been huge misunderstanding and I can not explain now I do not have time for few days. My job is on stake and I need to hospitalize Jay as well. I will never write on any other threads on thalpal unless it is asked by some one particularly and I made last comment addressing direct to the member because comments made by him/her were completely twisting and putting words in my mouth and yes the comments were deeply patronizing.

Jay, your comments about CAF were completely off base. They know far more about this research than the members of this group, and considering that all they have done is agree with the international consensus about this research, the criticism coming from you and others about CAF is totally wrong.

The first gene therapy attempt resulted in cancer. Did they rush full speed ahead, disregarding the potential for disaster? No, Dr Sadelain's group invented a new method of delivery for the gene. But why do trials? Why not just throw it at the public untested? Because there is not a single person on earth who can yet tell you the long term consequences of gene therapy. And until the long term consequences of DNA splicing are known, it is a fool's errand to proceed. It will take testing on generations of animals and long term observation of these generations before we know if even the most simple DNA splicing techniques are safe. These knee jerk reactions by some are completely misplaced. The safety concerns are very real, as we are talking about making changes to DNA which are then passed onto future generations. We better make damn sure we know what we're doing before taking that step and the world must come to agreement about what the limits will be before and not after.

If one of you is willing to volunteer your own child to be the first human test subject, let the Chinese know.

Dr Huang and his colleagues tried this on HBB with 86 zygotes they had obtained from local fertility clinics. These zygotes were unviable because each had been fertilised by two sperm. They were, nevertheless, suitable for experiment.

I don't see how the usage of unviable zygotes could be compared to conducting those experiments on a future human being. What we are talking about are basically just a bunch of cells that do not feel anything. They have no consciousness. They are not a human being. Anything else is, in my opinion, simply a projection that either originates from a specific education or happens on an emotional level. I would refuse to support experiments with the goal to give birth to a child with those genetic modifications and I fully agree that the concerns in this area are justified, but the article in the first post never mentioned this.

Andy my internet browser has setting which gives me popups when any new comments is made and discussions i follow and it keeps me always logged in and it pains me when i see my comments has been misunderstood when i did not had my full say and also ridiculed. I am tangling between four Indian languages two European and English and my English is not best. I have already logged off facebook group to restrain myself and I have made it clear that I will never write on other threads unless someone asks particularly because I also want to have life beyond thalassemia and I respect the most who have made it their life. At this moment I submit to only you to impeach me from this forum before I extend it to other full thalassemia senior member. But I want to have full say on this thread and my comment about CAF. CAF should be the roll model for every other organization and somehow fill the vacuum of its need. If we talk about the global consensus then lets talk but for sake of thalassemia do not exclude us. No sane person will have germ-line modification at this moment in its current form, but please do not call us insane to support the idea. It will be also good if we do not question our education. Whom you are referring as jerk and reckless are most respected university of that country. I was disturbed by the speed at which CAF has asked for the global consensus (yes we need some kind of consensus) but we also need urgent global consensus strongly in fever of preconceive diagnosis and clinical guidelines, we also need global consensus on visa policy not to discriminate aspiring thalassemics. If medical community is not ready to accept any mandatory obligation then we need to indulge in direct to customers detection. Like US and Europe we also want to have fruits of 'the genome project' and early detection in which entire world was involved. I do my best what i can do as in personal capacity like supporting a local guy from red cross who takes his van to places to places checks hemoglobin level and give advice. I tried to involve myself with TIF and when failed frustration came out. I made one comment on you because i have tried the particular product for two years now it is not perfect but it is absolutely correct with all my tests and every concern about privacy has been addressed have faith in US, EU privacy law (no commercial product i have done it only for informative purpose), It is my frustration that i see they are proactive and other disorder organization are also proactive with them and thalassemia lagging behind. It is my frustration despite having capacity CAF or TIF not been able to involve with finding out genetic markers related to thalassemia drugs. Yes i do not care about American or European thalassemics because i can clear see difference between privilege thalassemic and non privilege and i am experiencing it. If CAF knows something very dangerous about it then we also want to know the danger not just the decision. Whether want or not CAF has became global and i would like to see explanation to global audience as well specially when global views are what asked for. Became a big brother not only in decision but also in information. I do not see them as a germ-line editors and i will never go to them for that, how i see them as a if not better a strong contender to blue bird so that i don't die earning 'millions' to save my life and look at western privileged thalassemics living their lives in best possible extent. I have worked 12 hrs today before writing this and unable to go further. I agree with sofear mostly i agree partly with your last comment. and today i stop by saying i made the comments about CAF as an organization and if there is any personal address then i apologize.

The only ethical way is preconceive prevention the rest is fallout !

If you say i am attacking CAF then it is wrong. CAF can not handle one single criticism from outside. When it comes to ethics, prevention is the only ethical for me (it horryfies me to think of another child and PGD as well) and the maths behind the cost of prevention: 0.4 million births in USA every year cost of detection before having baby for both the parrents 200 dollars 0.8 billion for country. I have no desire to poke in other countries matters. I was just shown the picture on country level. I thought all thalassemics as one. I supported this study because like gene therapy it will take another 40 years to come to existence.
Sharmin sorry i did not done it in sophisticated way from beginning. Andy i should't have this episode.
Introspecting me i realise i can not go like this on and on i better serve my own peoples.

Poirot is there any way i can connect to you on ground.

CAF was quick to agree with this consensus because they already agreed with it, as do almost all scientific organizations. This is not a new issue. What is new is that the Chinese have thumbed their noses at the world and proceeded with these trials even though no international guidelines and regulations are in place.

What I see this week is hysteria from those unfamiliar with this technology and apparently even unaware of the ethical issues which date back at least as far as when A Brave New World was written. Please do not bash me or CAF for knowing what we are talking about. If you want to bash anyone, bash the Chinese for this disgraceful flaunting of the international consensus on a matter that could alter the course of the earth's future. Both here and on Facebook, I have seen these attacks from those who are half informed at best and this is by no means fair or reasonable.

It is one thing to discuss the technology. It is quite another to criticize those who fully understand the involved issues. To read snarky "screw the future" and even xenophobic comments made by those who have no comprehension of the vastly important ethical issues is quite upsetting, and in the end, all it has accomplished is to distract me from addressing issues raised by people who have problems that need attention. Here we spend so much time on things we in no way will ever affect, while ignoring what we can.

I have no doubt that the world will eventually see this technology used in very controlled ways and always following ethical guidelines. What no one wants is a rogue nation, operating with no moral center, using this technology to out-compete everyone else, and the Chinese are already suspected of having this as a long term goal. If you don't see the big picture, then learn more about it before commenting.

Perhaps this knee jerk reaction from uniformed people is what the internet has become and social media has lost much value because of this type of behavior, but this isn't social media and I suggest people become informed before declaring themselves experts on such a serious topic. And if nothing else, go back and read Brave New World again and ask if this should be the course of humanity. We're not just talking about thalassemia in this discussion and that is where the narrow focus serves no value. Open your eyes to the wide implications of this technology and you should understand why it should never proceed until international guidelines are in place and respected.

This topic is now locked.