Steve, when the Dengue Fever looked to get out of control in downtown Tokyo last fall they became very interested indeed. West Nile outbreaks occur in the US every year. What do people do? They do what is widely perceived to be the right thing: they spray. A lot. It may not be the best solution (it may not actually work very well at all, depending on the situation, but even "astute" folks seize on what they think is logical and will work when it hits the fan ).

I'm not quite sure that there will turn out to be a clean line between germline and non-germline gene therapy. Many genes (most?) are regulatory, they make new capabilities (a gene is something you can do with your genome) by turning other genes and/or gene products on and off depending on situations encountered. Some combinations will turn out to be useful or deleterious depending on, well, what happens to the environment or other genes sometime in the future. So, I don't think it will be possible to judge safe or non-safe outcomes based solely on observed effects. Yet we have to get better at regulation (the cat has left the bag, if not the building), which doesn't mean abjuring that activity because we currently believe we suck at it.

Victoria, I have boxes of Analogs that are looking for some possibly fortunate young adult to infect. Any ideas?

All, where do musicians fall on the Faber, Sapiens, Ludens continua? Do we need to redefine any of the 3 to accommodate them?

C.

On 2/15/15 5:35 PM, Steve Smith wrote:

This also could be considered another salvo *in* the politics of fear. "/If you *don't* approve on my schedule, the unregulated use of any given promising technology to relieve my specific life-threatening condition, you are harming me/".
What I would hope is that regulators would stick to their testing. If the safety protocols are met, then approve the treatments (like any other treatment). But don't slow the scheduling of the testing because people conflate germline and non-germline gene therapy, or just object because it offends them in some way.
I would hope the same, I have no idea what the current practice is. I have an instinctual distrust of bureaucrats to actually become familiar enough with that which they administer to develop and practice good policy. This could be a mostly unfounded bias.

At the same time, I don't trust us, the unwashed masses, to be informed and astute enough to make the kinds of distinctions required to have a properly informed opinion (when we sign petitions, carry signs, write our congresspeople, or vote). We constantly exercise /the tyranny of the masses/ when allowed. But I also defer to Winston Churchill's famous "Democracy is the worst form of government, except for all of the rest".

I know the difference between germline and non and appreciate generally the acute difference and understand that the latter has significantly less (obvious) intrinsic risks. On the other hand, like so many of us, I can admit to a bias *against* rapid technology deployment (not necessarily against rapid scientific development. ) I believe that a lot of "conflation errors" are based more in a "camel's nose" or "slippery slope" concern more than anything. I tend to forgive others' their own "conflation errors" based on these kinds of worries, even while I might try to disabuse them of their misunderstandings. I suspect your own concerns have an overtone of this nature as well, that you recognize that one semi-righteous win for the opposition will fuel them on to a dozen un-righteous wins. I feel the same way on every topic under public scrutiny/opinion... I don't want "them" to start a landslide in favor of "their" particular brand of ignorance, whether it be sheepish or wolfish.

My daughter is researching West Nile and Dingue Fever mechanisms, she is more worried that her work will languish on a shelf at the NIH or megaPharmaCorp, waiting until the threat of these diseases is on the first world economy before the therapies implied by her work will be implemented and made available those already under extreme threat (third world equatorial population) by these diseases than that one of "us" will be exposed to same, contract it, and not have a quick, easy, affordable remedy. I think I fully appreciate the economics and politics that drive these things, but that doesn't stop me from being sympathetic with her frustration. She ditched becoming a third world doctor to do this work, her heart still seeks to help those whose circumstances are not as fortunate as our own (or perhaps are deliberately suppressed to elevate our own?). She has much stronger opinions about this than I do, but hers may be informed by my own and then in recursion, mine informed by my loyalty to her.

I'm not personally terribly worried about advanced medical development because for the most part, I prefer to avoid traditional medicine... but the same logic that demands obligatory vaccination of babies for a wide spectrum of "public health threats" and criminalizes assisted suicide makes me uncomfortable about empowering the medical bureaucracy any more than it already is? More of my "slippery slope down the camel's nose" fears I guess.


- Steve

Marcus




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