Overselling Science, Halting Progress, Killing Opportunities: Gene Therapy, Cloning, Stem Cell Medicine & Synthetic Biology

Here's a note, slightly provoked by a pretty ridiculous piece posted at the webpage of the Institute for Ethics and Emerging Technologies. In this piece, a self-proclaimed, so-called "positive futurist" named Dick Pelletier delivers a sales-pitch for the program of synthetic biology much as envisioned by Craig Venter when holding his regular presentations aimed at potential funders, investors and customers in order to raise the value of his services, products and patents. Right off the bat, I want to underscore that what I mean to be saying here is not against Venter's scientific aims or, for that matter, his visions of what his science might eventually be good for. Not at all. What I want to point to, however, is the sort of overselling of scientific areas which are, frankly, in rather early stages of development that is going on in Pelletier's piece and that Venter himself is a bit guilty of as well, but that does not in any way limit itself to this particular field. Rather, I will here use similar patterns from the areas of human genome and associated gene therapy research, research on cloning and stem cell medicine to illustrate what this sort of overselling actually achieves, and why people and organisations (such as the IEET) seriously committed to using science and technology for the good should be wary of of this type of rhetoric.

So, what is it that Pelletier says? Well, a lot of unsubstantiated stuff, mostly, besides a lot about what synthetic biology "might" or "may" lead to, such as all of that which Craig Venter said when presenting his institute's breakthrough a while back. Very nice. I can see why Venter wants to attract investors and raise the share price of the company holding his patents, as well as the prices of the latter, and I suppose that Pelletier has some personal reasons, unknown to me, to help him doing that. What boggles my mind, however is the lack of complications, risks and the pretty optimistic (or is it infantile?) time-scale applied:

...they will produce a complete cellular system by 2015. Once this happens [...] Darwinian evolution will take over. This knowledge will help scientists understand how humans evolved in the past, and provide guidance towards a future human evolution driven, not by nature, but by tomorrow’s synthetic life technologies. We will see tiny self-reproducing factories, disease-killing machines, and exotic creations performing many useful functions.

 Nice. Getting help from something that certifiably works to understand nature better with the help of some technological innovation. Sound scientific strategy, right? But, who would have thought that....

....by 2020, synthetic life creations could eliminate, or make manageable, nearly all human sicknesses, including most of today’s dreaded age-related diseases.
 

Hmmm? And that is not the end, for in fact....

...by 2030 or before, human-made life forms could provide everyone with an affordable, ageless and forever healthy body fashioned from newly-created ‘designer genes.’

Right. Fantastic. Here's my life savings, then - no questions asked.

Not a word about risk, failure, misuse, limitations or the wicked ways of the world that most likely will see to it that this, just as any other piece of technology, no matter how well it works, will certainly not provide "everyone" with anything worth having. In particular if guys like Pelletier (as well as Venter) continues to cry wolf long, long before there is anything even close to worth having in those areas where imminent delivery is ambitiously promised. Perhaps this is what it means to be a positive futurist? Well, in that case we don't really need them do we? We already have them, just they are known under other names (take your pick) when calling us up at the least suitable hours, or filling our email inboxes, with one senseless business scam after another.

Ok, ok, so calm down. So far, this is just another of these naïve grown-up school boys and useful idiots letting some steam off. Admittedly, there is also a wider organisation with academic ambitions that for some reason is publishing the rant, which is perhaps a bit more of a reason to get worked up. But, hey, that's nothing new, is it? So what is the problem? To get to that, I need to widen the lens a bit, in order to describe how this is just one of many examples of how – indeed! – exciting and promising scientific and technology areas are ridiculously oversold, to the possible financial gain of a few of the involved experts, but to the detriment of those people that could in fact have reaped substantial benefits from the field, had it not been for the fact that once that stage is near, everyone with a buck to spare to make it happen has lost interest and, frankly, faith. So here's my cases:

1. Gene therapy. This baby has in fact been pitched as being right around the corner since the 1950's (and through the 60's and 70's), believe it or not (just pick up some of the scientific articles in the field and look for the little motivator sentence at the end). It is a wonder that James Watson was able to reuse it to attract funding for the HUGO project (although he had to switch to the wider concept of genomics half-way, when the prospect revealed itself to be much less practical than what had been thought at the outset). However, now when at last some of the first really promising clinical applications are indeed surfacing, investors have lost interest and so would I, had I been in their midst. The example of a fully developed, initially tested and very promising gene therapy for cancer sitting in the freezer due to lack of funding to do the larger sort of trials needed to have good evidence for safety and effectiveness is telling. I mean, who would believe anyone claiming to have a "promising" gene therapy that just needs some testing when that song and dance has been performed a million times before with the same depressing aftermath?

2. Cloning. Well, this story is in fact a part of that of gene therapy, as well as the next one of stem cell medicine. Here, the overselling has been mainly in the form apparent mavericks claiming to be planing very shortly or to actually have done human cloning, as well as to claim human cloning to be a help for a large number of problems that may engage people. I won't supply any link here, since this is fraud and tinfoil-hat territory, but if you're curious, just google "human cloning" and surf away. In any case, human cloning comes in two basic varieties. One is what is also known as "therapeutic cloning" or, better, somatic cell nuclear transfer, as used in a process to produce pluripotent embryonic stem cells. Another one is what is sometimes referred to as "reproductive cloning", meaning that SCNT is used to produce a human embryo, which is then transferred into a woman's uterus and allowed to be carried to term. This latter technique is interesting mostly as the most realistic prospect for having a gene therapy procedure that could in fact work for some of the major and most serious genetic diseases. However, the prospect of having anyone allow that to happen, even less to provide funding for it has been substantially crippled by the actions of the mentioned mavericks. In effect, while gene therapy for mitochondrial genetic disease might slip through the net raised in response to the proof of the apparently obvious irresponsibility of scientists provided by said mavericks, the dream of of this sort of powerful gene therapy has otherwise been effectively bumped off.  

 3. Stem cell medicine. This is a very much alive area, and in recent years there has been a stream of news about fraudulent or highly questionable operations (other examples are here and here, and these are just a few, among the ones popping up through a simple search). Hurrying to promise this or that on the basis of a scientific basis that is still pretty frail and full of gaps, and clinical experience is effectively nil. All of these operations, of course, grossly oversell the potential of whatever stem-cell based service they are offering and, of course, they do that to attract paying customers and investors. A step away from that regarding fraudulent behaviour, but still related when it comes to vested interests playing a part, we have the recent European case of the failed attempt to have embryonic stem cell lines patented. While the reasoning of the court may be discussed, it is clear to me that the case for a patent at this early stage will have to contain pretty obvious misleading parts, lest the condition of usefulness present in all patent laws would be difficult to meet. Furthermore, said sort of overselling would have had to continue when making use of the patent. Stem cell scientists and supporters enraged over the ruling were all pretty open about that the idea of the patent was to sell it to big pharma in order to have them fund clinical development, research, large trials, and so on. Well, that's fine, but would at this early stage seem to imply promising said corporate actors enough to have them open the purse. So, one may justifiably wonder what was indeed happening in the case of professor Brüstle, who was denied a patent by the European Court of Justice – was it just a loss of clinical prospect or was it his personal financial exit strategy that disappeared in a cloud of mist, or was it a bit of both? Probably the last, so we may be certain that he would have just as good a reason to oversell as in the other cases I have mentioned, had he instead been allowed his patent. And I'm pretty sure that this would have backfired, just as the other examples I have been given above, all while the rights of the patents would have blocked the scientific progress that might one day have made the sales-pitch honest and fair. Or, it that would have proven to be overly pessimistic, to discourage any potential funder or investor, just as in the case of gene therapy.

And backfire it will also in the synthetic biology case if people like Pelletier continue to rant and do Craig Venter's marketting work for him, albeit the latter – I'm sure – will laugh all the way to the bank.