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My Genes Damit!Lately there has been a flurry of activity in the news due to a new technique that is spreading like wildfire. It is called CRISPR-Cas9 or "Clustered Regularly Interspaced Short Palindromic Repeats associated protein" and it allows the precise modification of individual genes. This is an enormous breakthrough because up to now genetic modification was more akin to a hit-and-miss process. You inserted your desired genetic material into viral DNA or RNA (as the case may be) and then you had to wait until the virus infected the host, injected its payload and hope really, really strongly that the payload would insert itself in the right position. Maybe. Probably. Perhaps. If nothing else happens.

This process is one of the two major reasons why so far precise genetic modifications were mostly done in the realm of science fiction. The other reason is simply because we don't know enough about genomes in order to understand what they do and how they do it. So far we were stumbling in the dark with an incomplete map over a mined field during full moon hopping we won't step on something rather nasty.

But no longer. Thanks to CRISPR-Cas9 we now have a big, big lantern. Sure, we still don't have a map, but at least we now know exactly where we are stepping on. Furthermore, we now have the technology to make permanent and inheritable changes to our genetic makeup.

And what has this to do with anything?

Plenty!

It so happens that this technology can be used for "good" or "evil". Cue ominous music with plenty of undertones.

WHAT IS GOOD FOR YOU

But neveryoumind buecause the governments and "ethics" committees are here to tell you what's good for you! Neveryoumind that a great deal of what's going on is being paid for through…you got it…taxes!!!

Over time… and until this story dies… you will hear a great deal of imbecilic politicians stating that we must use this technology "responsibly" and "for the greater good" in order to "benefit humanity". Aha… Uhu… not a chance in hell!

A few days back there was sort of a "recommendation" (i.e. "recommendation" being code for "order") from the bombastically named "International Summit On Human Gene Editing" sponsored by "The National Academies of Sciences, Engineering and Medicine" (and yes, in US). This "recommendation" -which in reality is equivalent to an edict- decreed what happens to be OK and what is not. Let's take a look:

Basic and Preclinical Research seems to be OK, as long as it is held by the leash of "appropriate legal and ethical rules and oversight". Of course, they don't specify who will determine the "appropriate" laws or even if such laws will be "appropriate"; nor do they specify which "ethical rules" apply and who will be in charge of "oversight". If you believe that they ware winging it and flying by the seat of their pants, you wouldn't be the only one.

Clinical Use is OK only if it is used to treat "somatic" cells. This is, cells that won't propagate to the next generation. Of course, this is OK only if these uses can be "appropriately and rigorously evaluated"…scientifically?... no!, "within evolving regulatory frameworks"…No, they are not kidding. These people are literally saying that the determination whether or not this new wonder technology may be used to help people will be determined by political idiots and apparatchiks! Un-frigging-believable, but absolutely true!

Clinical Use is not OK if it is used to treat "germline" cells. This is, cells that will propagate to the next generation. They caution (with reason) that many technical and scientific issues may arise from an imperfect technology, such as harmful effects, unexpected interactions with the environment, and others. This is most certainly correct and proper. There are risks in any technology and those risks are real and must be properly evaluated. But then this collection of "wise" people gets off the rail stating that there is an "obligation to consider implications …. and the future generations", that "permanent genetic 'enhancements' to subset of the population could exacerbate social inequalities or used coercively" and… drumroll please… the inevitable "moral and ethical considerations in purposefully altering human evolution". This type of use should not be permitted until "relevant safety and efficacy issues have been resolved", "there is broad societal consensus" and "any clinical use should proceed only under appropriate regulatory oversight". And… here we go again… "appropriate", "oversight", "consensus", "regulatory"… sounds familiar?
And lastly these luminaries of brain power (or was it dimming… we can never get it straight) came up with the notion that there is a need for an "Ongoing Forum" because the "international community should strive to establish norms concerning acceptable uses…" blah…blah…blah…blah…

BECAUSE OUR ORGANIZATION SAID SO

And who sponsored this summit? National academies from UK, US and China which…coincidentally… are either paid for by their respective states or they are heavily subsidized (directly or indirectly) by them. And yes, some of them do not receive "direct" subsidies, but they do receive "payments" for services to the state. So let's be clear.

BECAUSE WE SAY SO

And who are the people who said so? You can find the usual suspects by Googling the name of the summit, but allow us to list some of the degrees that they sport:

  • Professor of Biology
  • Chair in Bioethics and Philosophy
  • Director of a Molecular and Genetic Medicine centre
  • Chair in Hematology/Oncology
  • Founding Director
  • Group Leader and Head
  • Professor of Law and Bioethics
  • And so on.

Have you noticed who is missing? You! There are no "representatives" from the people. You, us, and everybody else wasn't invited. And why was that? We don’t know but if you would ask the street, it would probably tell you that we, the people, don't matter.

NO, NOT REALLY

And now it is our turn. So a bunch of scientists took it upon themselves to declare what is good for us. Not only that, but they relied heavily on morality, ethics, the law, regulations and social consensus. Does this sound like something reasonable? Workable? Even practical? Of course not!

But not happy with that, they declared that we need more of the same, or, to be precise, they need more of the same which is to say that they want more power to tell us what is "good" for us, but now on an ongoing and international level… paid by you, of course.

And what is most interesting is that to a large degree one way or another, their jobs, positions and salaries are dependent upon money coming from the state in terms of subsidies either direct or indirect.

In other words, people that are not you, who are paid or owe their positions (to a large degree) to your taxes gets to decide what is "good" for you. Not only that, but have you noticed how in their entire declaration they mentioned you only once and in the broadest term? Yes, they refered to a "broad societal consensus"… which they promptly proceed to dismiss with the demand that an Ongoing Forum be instituted where the "international community" would establish "norms concerning acceptable uses"…Which is code for "government apparatchiks" who get to decide, again, how your money is spent and/or may not be spent.

This is totally and utterly ridiculous!

THINGS ARE CLEAR

We are sick and tired of people muddling the waters with issues that are totally, completely, utterly and incontrovertible outside of their rights. This is simple. People paying for these technologies get to decide what to do with them and in which direction to take them. If you are sick and wish to use your money to hire a researcher to cure you, that is your absolute right. It is your body and your money and therefore it is your absolute right (yes, as in absolute).

Tossing ethics and morality and regulations and all other kinds or subjective opinions into the mix (because after all, they are only opinions) is irrelevant. It is their opinion and as such they have no right (literally) to impose it on you. Even if they have consensus, because by definition a consensus of opinion is… well... an opinion! If they wish to be ethical and moral and be regulated and legislated out of existence, that is their choice. But they have no right to determine what is good for us because we, the people, one by one, one at the time are the only ones capable of determining what is good for us.

It is for this reason that these kinds of summits and declarations drive us crazy. Here we have a bunch of people that are eminently qualified to issue scientific opinions which could be very useful in helping us to make informed decisions. And what do they do? They issue subjective recommendations which only feed the hunger for power and control that apparatchiks and politicians have.

Let's be clear.

Our bodies are our bodies. Our money is our money. They have no right, none whatsoever, to tell us what to do with them. Period.

However, we are also responsible to ensure that we do not interact with other peoples' properties without their voluntary agreement. Which in this case translates into making sure that if we pay for those technologies and the cures they may bring, any side effect they may inflict on other people (for whatever reason) makes us liable.

With great freedom comes great responsibility.

It so happens that it is in our best interest not to screw-around with this technology because it can backfire very badly onto us. And strange as it may seem, this is all that it is required to keep these technologies at a minimum risk level. We don't need imposed and arbitrary and subjective and unassailable ethics or morality or laws or regulations or oversight. All we need is to be responsible simply because it is in our best interest to be so.

But perhaps your opinion differs from ours. Perhaps you believe that the ethics and morality of legislators who create laws and regulations and define oversight organizations are the way to go… we are sorry but if you are soooo gullible we would like to remind you of legislative gems such as "ethnical cleansings", "sub-humans", "heavy labour or death for homosexuals", "summary judgements and executions" and many others. There you go. Hope you like the company.

Note: please see the Glossary if you are unfamiliar with certain words.

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