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Ethics in Treatment With Telomerase
Brian Hanley   Oct 12, 2015   Ethical Technology  

Much is being made recently about telomerase as the cure for what ails you. Activating telomerase is touted by Bioviva as a supposed cure for Alzheimer’s disease. (In fact, the article referenced advances an hypothesis.) A PR announcement that appears related has appeared.

Others have advanced telomeres as the key to aging for many years. Mice treated with telomerase gene therapy reversed many aspects of age related degeneration. Mice with telomerase expression that also had over-expression of cancer resistance genes lived 25% longer lives. Telomerase deficient mice also had a similar result when telomerase was restored. This appears to be a robust result in mouse model.

Telomerase gene therapy is very different from the drugs that have been pursued by Sierra Sciences and others. If you have a problem with a drug, you can stop taking it. It’s difficult or impossible to do that with gene therapy.

Some of the results for TERT gene expression appear quite desirable. “The beneficial effects of telomerase are particularly notable in epithelial tissues, which show an improved fitness and a more efficient epithelial barrier function at old ages, resulting in decreased aging-associated inflammatory processes.

However, not all evidence on telomerase is good and some claims don’t stand up to examination. Telomerase is activated in most cancers (over 90%) which is critical to allow those cells to become immortal. That is why, to get unusual longevity, researchers also enhanced cancer resistance. “Tert expression can significantly delay aging in mice, although this requires counteracting the protumorigenic effects of telomerase by increasing tumor suppression.

Evolution works with tradeoffs. Large, long-lived mammals are extremely conservative with the activation of telomerase in somatic cells. Some very long-lived species like elephants, over-express anti-tumor genes naturally, which helps them avoid cancer. But mouse somatic fibroblasts do have active telomerase. Mice live a couple of years, and to a great degree, cancer in animals is a function of probability. The number of cells in a mouse is less than the number of cells in a human hand. The more cells there are, the higher the odds should be of changes leading to cancer in one of those cells. And the longer an animal’s life span, the more time it has for something to go wrong. 

We know, for instance, that radiation late in human life has little chance of triggering cancer – even very large doses. When we look for effects of small radiation doses, we look for them appearing after irradiation in childhood, and even then, those effects are extremely weak. A small, short-lived animal has less reason to minimize telomerase to control cancer.

In human skin, approximately 25% of adult cells exposed to sunlight show pre-cancerous changes. Adding a gene critical to transforming those cells into cancer isn’t wise. I have read the opinion on a blog that telomerase expression will defeat cancer, but there is no evidence I am aware of this is true. If there is evidence for it in science, I would like to know about it.

In Alzheimer’s disease, a mouse model showed improvement when telomerase is down regulated. “...telomere shortening, despite impairing adult neurogenesis and maintenance of post-mitotic neurons, can slow down the progression of amyloid plaque pathology in Alzheimer’s disease…” This is the opposite of the idea that Dr. Fossel wrote suggesting telomerase activation could treat Alzheimer’s. This study is a mouse model of Alzheimer’s, and there may be differences from human, but it should not be dismissed without evidence.

How could it be that Alzheimer’s could be made worse? Well, in this mouse model of Alzheimer’s, whatever triggers the amyloid plaque is pretty clearly independent of telomerase. So turning telomerase on once plaques develop only makes those cells better at making plaques. Telomerase is only one clock in the genome. There are many of them and we are just beginning to catalog those clocks and how they work.

The mice in the second telomerase restoration study did not live longer than normal mice. And while the first telomerase study above claimed no increase in cancer rate, that study’s numbers (23 TERT treated mice) were not remotely high enough to make that claim. If cancer had been seen with such small numbers, it would mean that this therapy was astoundingly dangerous. In human populations, a cancer increase from 15 in 100,000 to 20 in 100,000 is meaningful.

In this first study, the increase in life span was 20% for mice 1 year old at injection, and 13% for mice 2 years old at injection. That’s a significant increase in life span, but equaled by quite a few other therapies as we can see in the chart. When you look at this chart you can see several things. First, there are a number of drugs that extend life-span. And second, that in different studies of the same drug at the same dose there is wide range of results. What this tells us is that there are many variables that affect life-span, and those other variables are changing the drug results. For instance, rapamycin can extend life by 7.5% or 22%.

Given this context, marketing unofficial, tiny, clinical trials to the public with overblown unsupported claims is not ethical. Biology is very complex, and amateurs picking up blog posts or speculations off the internet are not helpful to the field. I understand the impatience. I had a career in software, and worked for multiple startups prior to my grad school work on gene therapy and vaccines. Investors in the Silicon Valley who are used to software startups want the impossible, and seem to prefer it. 

Biopharma is very different from software. Biology is slow because one frequently finds apparently paradoxical results, and the systems are slow to tell you. Usually, when you affect one thing, you affect quite a few others as well. When you do find out that you have made a mistake, it’s a very big deal when it’s a human involved.

So far, there are 7 patients killed by gene therapy clinical trials.

Brian Hanley is the founder of Butterfly Sciences, a company developing gene therapies for aging. He has a range of papers in biosciences, economics, policy and terrorism, in addition to a recent text on radiation treatment. He obtained his PhD in microbiology with honors from UC Davis, has a bachelors degree in computer science, is a multiple entrepreneur and guest lectured for years to the MBA program at Santa Clara University.


I am always very skeptical of self-fashioned “ethicists” preaching their moral judgements.  This goes double for “medical ethicists” who seem to forget that the maxim “do no harm” doesn’t mean not to give CPR to a dying person because you might break a rib.

Same goes the gene therapy being offered by BioViva.  First, we ought to get our fact straight: I’ve never seen BioViva “marking unofficial, tiny, clinical trials to the public with overblown unsupported claims.”  This is slanderous.

“BioViva USA, Inc. has become the first company to treat a person with gene therapy to reverse biological aging, using a combination of two therapies developed and applied outside the United States of America. Testing and research on these therapies is continuing in BioViva’s affiliated labs worldwide.”

Secondly, the gene treatment that BioViva is offering is hTERT and a proprietary myostatin inhibitor, and has already been tested by its developer Dr Williams on himself.  He currently at age 40 has NO plaque in his arteries.

“BioViva is a new company offering experimental medical services outside US borders.  Their team includes

a lab that provides genetically modified viruses with a gene payload, made to order.  (This has now become a reliable and predictable technology.)
A doctor who has experience with experimental gene therapy, and who had the courage to experiment on himself five years ago, with good outcome thus far.
Sites in Colombia and Mexico where doctors will administer therapies for which there is not yet FDA approval.
Most important, a Scientific Advisory Board that includes two of the most prominent, senior biochemists who developed the science of telomerase in the 1990s and before.  They are Bill Andrews and Michael Fossel.
What they offer is gene therapy with hTERT and a proprietary myostatin inhibitor “in the same family with GDF-11,” according to CEO Elizabeth Parrish.”

Also, a clue that this article is biased: “Ronald Crystal of the New York Hospital-Cornell Medical Center in Manhattan and Jeffrey Isner of Tufts University in Boston told The Washington Post in Wednesday’s editions that they believe the six patients died from underlying illnesses and not from the gene therapy.” -

Frankly, I think that some people are not fit to make ethical judgements for everyone because their underlying prejudices prevent them from making reasonable evaluations - I am basing this upon the slanted way this article was written.

Let me close by citing this article by Maria Konovalenko, which cites gene therapy as the best way to defeat aging.  I am 54, and am under a death sentence because my genes are flawed and am inevitably dying of senescence.  Frankly, what is the harm if I take an informed risk with my life to cure this fatal disease?

“Gene engineering is the most powerful existing tool for life extension. Mutations in certain genes result in up to 10-fold increase in nematode lifespan and in up to 2-fold increase in a mouse life expectancy. Gene therapy represents a unique tool to transfer achievements of gene engineering into medicine. This approach has already been proven successful for treatment of numerous diseases, in particular those of genetic and multigenic nature. More than 2000 clinical trials have been launched to date.

We propose developing a gene therapy that will radically extend lifespan.”

This article is very one sided, sure it lists some of the key studies eg, Blasco and Dephino but simply ignores all the other excellent studies and tests carried out on human cell lines in-vivo that induce telomerase. In fact telomerase induction in-vivo is a very common procdure in stem cell work to create more stem cells for implantation, the author is either blissfully unaware of the literally dozens of papers demonstrating this and no increase in cancer.

Where are all the papers from Geron, Cal Harley, Wright and Shay, Dephino and Blau to name a few as well as other papers by Blasco which directly identify the relationship between telomerase/telomeres and Cancer? Please consider doing more research and presenting all the facts not just cherry picking if you wish to be taken seriously!

Can the Author also confirm he is an authority on telomerase Biology of a similar calibre to Dr Andrews, Dr Fossel, Dr Blasco, Dr Dephino and Dr Blau? As it stands the piece is a basic overview of mouse tests but fails to address the many human cell lines it has been tested on, without this fundamental information the article seems very weighted towards being pro cancer instead of being objective.

I would also like to know how the above author can possibly remain objective towards the subject company (Bioviva) when said author in fact employed Liz Parrish who then moved on from Butterfly Sciences and founded her own company? Such a fundamental question should be addressed in order to assure the author is being fair and objective in his assessment of telomerase biology.

There is absolutely nothing unethical here. 

What you are witnessing is the evolution of a parallel system of healthcare.

The only thing unethical is that in the year 2015, where global spending on healthcare is closing in on $7 trillion, $1 trillion spent on pharmaceutical products alone, with $200 billion of new R&D annually, that millions of patients still become “no option” annually

And the cures are where? Not to be found via traditional channels

On top of that, the “safety argument” has been obliterated by the healthcare system’s own actions - 7 gene therapy deaths - please…

Today there are literally hundreds of FDA approved products that can prolong QT and/or Cause Torsades De Pointes resulting in sudden cardiac death; which are IARC Group 1 and 2 carcinogens; which have significant ”black boxed” SAE warnings; not to mention the 2+ million ADEs (100K+ fatalities annually in U.S. alone) which come from products that have gone through decades of human testing.

Animal models remain poorly predictive for humans, yet remain a mandatory cornerstone behind years and millions of dollars of early drug development activities. Penicillin kills guinea pigs and produces birth defects in rats, aspirin is poisonous to cats, cancer has been “cured in mice” thousands of times, and dozens of drugs found safe in animals are later withdrawn from market due to adverse drug events in humans.

Additionally, we continue to spend billions of dollars on traditional “gold standard”, population level clinical studies, despite the fact that they use definitions of disease that are excessively inclusive (based upon disease characterizations from literally decades ago), while at the same time are excessively exclusive of major segments of the patient populace.

What people have begun to understand is that it is pretty much all a big gamble, any way you slice it – so why not become an “n-of-1”?

One only needs to survey the landscape where such dynamics exist in “stealth mode” in current society to see where these concepts are already permeating our lives.

From a therapeutic perspective, current FDA initiatives regarding expanded access, off-label use, “animal rule only” development, and botanical drugs, as well as their public written position on personal importation, all highlight examples of various degrees of clinical, “let the patient beware” freedom that the agency is quietly willing to grant subjects today who seek out such products or who engage in related studies.

Further afield from pharmaceuticals, markets such as dietary supplements, cosmetics, processed ingredient foods/beverages, tobacco, legalized marijuana, and pesticide/herbicide usage, all technically represent large, uncontrolled clinical experiments on the general public, that we all are quite willing to accept today as personal choices.

It is a new era - good job Liz!

Response to “dobermanmac” from the author of the article.

1. If the trial was official, it would be registered, correct? It would have an IRB, not so? Calling the claims made overblown is being overly kind. The claim that telomerase can cure Alzheimer’s has zero evidence for it, and significant evidence against it. That isn’t, properly speaking, “overblown,” that is malarkey until proven otherwise.
Liz Parrish says things about telomerase that are just not true. For instance
“Animals studies point to no and even reduced risk of cancer.” Statements like this aren’t even sophomoric, they are just wrong.

So, it is not slanderous, rather it is accurate. I’ll accept a correction that overblown could be more correctly termed nonsense if you prefer that. Why people are so willing to listen to what Liz Parrish, a former hair stylist, has to say about a quite esoteric medical subject is beyond me. She has no college education I am aware of in biology. Making mistakes here is deadly. 

2. Are you suggesting that this PR blitz is not a marketing campaign? It certainly appears to have you pulled in. “I am 54, and am under a death sentence because my genes are flawed and am inevitably dying of senescence.”
You want to believe something. Someone says they have your elixir you want. It’s an old story going back millenia. You think telomerase sounds like the ticket. I guarantee you it is not what you think.
What else is it when a company puts a notice on PRNEWSWIRE and then conducts sessions on Reddit and has people involved with the company posting onto Facebook?

3. I am aware of Jason Williams (@jasonwilliamsmd) treating himself with follistatin. I am unaware of Jason using telomerase gene therapy. This treatment of Jason’s is not a proprietary myostatin inhibitor. I have some gene therapy vials for follistatin in my refrigerator. These natural genes can’t be patented. So it’s not likely to be proprietary. Follistatin will build muscle, however, myostatin is not just a negative regulator of myosin. Myostatin is also a positive regulator of tendons.

We don’t know if there could be a problem with follistatin supplementation or not. Bodybuilders abusing steroids have experienced tendons snapping. Steroids do signal to the myostatin system.

However, I have not argued with follistatin. There is no evidence nor rationale for believing follistatin expression is related to cancer. The animal models of follistatin don’t show harm to tendons except at extremes. Humans are not mice, but I don’t have any major problem with follistatin.

4. Only one if Jeffrey Isner’s patients is on my list of gene therapy deaths. There is another cancer patient who it could be argued might have survived better without VEGF. However, I don’t include that one in my totals. Dr. Isner’s trial had some significant issues and here is the warning letter.

This is my list of gene therapy deaths:
4.1 - A patient of Dr. Isner died after a cardiac injection. Dr. Isner appeared to try to hide this death. (See letter above.)
4.2 - Jesse Gelsinger died from an immune response to the AAV.  I examined this case in detail. I am pretty sure that Jesse would have walked out if he had an injection of Enbrel and/or corticosteroids, and/or IL-10.
4.3 - Jolee Mohr died from apparent over-suppression of TNF-alpha by a gene therapy that produced Enbrel. She was also not properly monitored, and the clinicians ignored her until she was dying of a massive fungal infection. Another multiple failure.
4.4-4.7 - There were 11 SCID children treated with a gene therapy and 4 of them developed leukemias. I think there was a fifth who got a lymphoma from the gene therapy. I remember reading there were 5. However, I can’t confirm that, so it isn’t part of my total.

Protocols get screwed up in the best of trials. However, someone engaging a clinical therapy in a foreign country that is not a registered trial may not be treated by someone with even that much on the ball. Jason Williams, is I think, quite good and I respect most of what he has done. But I can’t confirm what he knows right now. Jason stopped communicating with me right after Liz Parrish visited him.

5. “Frankly, what is the harm if I take an informed risk with my life to cure this fatal disease?”  I have no problem with that. The issue here is “informed risk”. Amateurs who don’t know what they are talking about are saying things that there is no evidence for. That is not “informed risk”.

6. Maria Konovalenko has a proposal. I have been working on gene therapy for aging for 7 years after grad school. There are many interventions that have shown they are better than the best drugs can do. That is one big reason I am interested in gene therapies over most drugs. Does that mean that Maria’s project proposal will work as she defines it? No. In fact, that would be better said, “Hell no.” Projects in medicine rarely work as expected. Bodies are extremely complex.

Biology is not like physics. You can’t make a bunch of calculations based on first principles and know what will happen. You can guess. But you always have to do the experiments. And even then, humans are not mice. The AAV dose that killed Jesse Gelsinger did not kill non-human primates of smaller size. I know exactly why, and this illustrates that humans have very significant differences. Very, very few parts of biology work more or less like clockwork. Vaccines are an example of that, but even there, things happen sometimes.

7. Let me be clear. I have tested a gene therapy for aging on myself. I did it in July of this year. I was extremely careful about what I did, and took a lot of time and care with it. I have refined my protocol from that.

I’m not an amateur slinging newspaper articles and blog posts from other amateurs at the public. I try to be very careful about what I say, because screwing up can kill. If Liz Parrish wants to inject herself with something I am not going to interfere. I had that conversation with her and I told her I thought what she did was dangerous. 

I am going to speak up if I see the public being conned into thinking that something is perfectly safe when it isn’t, or that something will work when there is no reason to think it will except hopefulness.

If anyone today tells you that they can reverse aging, that is nonsense. Nobody can do that now. Reversing aging is not what this telomerase and follistatin trial is.

Response to NKVD1975 (AKA Steve Hill, who works with BioViva doing PR)

1. Cell line studies mean little or nothing for the organism as a whole. Bluntly put, Mr. Hill, you don’t have the foggiest clue what you are talking about at the most rudimentary level of biology! You speak of cell lines in the same sentence as cancer, which is an organism disease. From the point of view of the cancer cells, they are being very successful. You also seem to be unaware that almost all cell lines are immortal. Most of them come from cancers. If they don’t, then they are induced. Do you know why nobody is supposed to work with their own cells on the bench in a lab? It’s because, if cells that are immortalized for study get into your body somehow, you have cancer.

2. You throw Dr’s Blasco, DePinho, and Blau’s names at me as if:
A. You had any idea what those scientists have to say about TERT.
B.  Those scientits are aligned with your telomerase gene therapy project. That is total garbage. Those scientists say no such thing. Bill Andrews and Dr. Fossel I discussed in my article. Apparently you missed that.

3. Here are some papers directly identifying the relationship between TERT expression and cancer. Note that Blasco and DePinho are authors.

3.1 - Increased epidermal tumors and increased skin wound healing in transgenic mice overexpressing the catalytic subunit of telomerase, mTERT, in basal keratinocytes. González-Suárez, et al, Blasco.
“the epidermis of these mice is highly responsive to the mitogenic effects of phorbol esters, and it is more susceptible than that of wild-type littermates to the development skin tumors upon chemical carcinogenesis.”

3.2 - Cooperation between p53 mutation and high telomerase transgenic expression in spontaneous cancer development.  González-Suárez, Flores,  Blasco.
“Altogether, these results demonstrate that constitutive high levels of telomerase activity result in a decreased life span associated with an increased incidence of neoplasias as the organism ages.”

3.3 - Constitutive telomerase expression promotes mammary carcinomas in aging mice.  Artandi et al, DePinho
“These data indicate that enforced mTERT expression can promote the development of spontaneous cancers even in the setting of ample telomere reserve.”

3.4 Mice with bad ends: mouse models for the study of telomeres and telomerase in cancer and aging Blasco.
“All together, these findings suggest that telomerase activation at early stages of tumor growth may actively promote tumor growth and survival even if telomeres are still sufficiently long, and that telomerase activation could favor tumorigenesis by at least two different mechanisms: by signaling proliferation and promoting growth independently of telomere length, and by rescuing tumor cells with critically short telomeres”

4. I had an unfortunate, and quite short partnership with Ms. Parrish in 2014. You seem to be implying that this somehow made scientists publish papers that don’t agree with the deadly nonsense I am addressing here.

Response to “Ira S Pastor”

So pushing a dangerous gene therapy using malarkey is ethical? That is pretty outrageous for a pharmaceutical executive.

Either that is what you think, Ira, or you didn’t bother to read my article.

I suggest that you educate yourself.

No Brain

You miss the point

Liz took a chance with herself, with a research stage biologic, ex-U.S.

The risk endured was no different than any Phase I tolerability study, with any new biologic entity, at the point of “first in human” experience

And no different than the endless array of products that FDA has oversight on, that NEVER have to be tested in humans, that we consume on a daily basis as personal choices

To Mr Hanley: I am very grateful for your full and complete response to my comment.  You are very knowledgeable in the field, and your opinion ought not be nullified or vilified.  In my opinion, BioViva has a very bold strategy that will inevitably invite criticism from more cautious types of personalities.  Being 54, I feel the clock ticking toward my inevitable demise from senescence.  Furthermore, 30x the people who perished in the 911 terrorist attack die worldwide from aging each day, not to mention the suffering and expense of all the people who inevitably grow feeble due to senescence.  Thus, I believe a very clear case can be made for a bold strategy mainstreaming gene therapy.

We ought not lose sight of the catastrophic damage of diseases for fear that a small number of individuals may perish in the quest to cure them.  Never let your sense of morality stop you from doing what is right.  By the way, my idea of informed consent must be different than yours: I don’t believe a person must have the vast knowledge you have in order to ethically agree to participate in an experimental treatment.  Might I add that Liz Parrish, being patient zero, is nearly as informed as you Mr Hanley, so even you agreed in your response that she is capable of informed consent in this instance. At the risk of discrediting myself, I think of her as a hero, and given her lofty humanitarian goals, a near saint, and sincerely wish the world had more bold people like her.

Response to “dobermanmac”
I understand your interest and concern. At this point, the best thing you can do for longevity is exercise. Exercise a lot, and have a real purpose, a value in society.

I am working on things in this area. As I said, I tested a gene therapy on myself this July. What I didn’t do is turn it into a marketing campaign. It’s not time for that yet. There is no point to adding to the suffering and death that already exists. I have another project I would like to start up. Feel free to contact me if you like.

Liz is not as informed as I am. She is not anywhere close. I know this beyond any shadow of a doubt. Her statements are just wrong. Those around her say other things that are completely confused and wrong. She has demonstrated to me that she is incapable of processing a discussion in the area of gene therapy. So are most of those around her unable to do so. It’s not heroic to be uninformed and foolish. That is just wasting yourself and others time. From my personal experience with her, she is very far from what you believe.

It is quite likely, dobermanmac, that you are more informed than Liz is. I don’t mean that facetiously at all. At least you are well aware you need to learn.

The issue is not that she did this. She has already told me about consuming things I thought were potentially dangerous. The issue is that she is apparently using this to market this treatment to others while making clearly false statements, some of which I discussed above.

Mr Hadley:  Again thanks for the complete response, it is a true pleasure to read a person who uses complete sentences and is knowledgeable able the subject (plus isn’t just making a facetious joke).

The main reason I am writing you again is to note that on the BioViva website, they have updated their ethics page:

I am personally exercising vigorously about an hour and a half a day, on a CR diet with intermittent fasting, a vegan(ist), and taking multiple supplements.  Furthermore, am undergoing a complete introspection of my neural patterns in an effort to improve my attitude and learning abilities, plus taking in a tremendous amount of data each day.

After listening to Liz in a couple of interviews, I believe BioViva wants to popularize gene therapy with various gene packages - to her knowledge BioViva is the only company currently doing this.  This is risky business, not only because BioViva is pioneering this (commercial human augmentative gene therapy), but because taking the FDA approach to USA approval would be too expensive and time consuming given the potential to curtail some human suffering.

I think the time window Liz mentioned was 5 years until the hTERT and a proprietary myostatin inhibitor could be available to the general public who doesn’t have the vast amount of money necessary to be an early adopter.

Showing my ignorance perhaps, I believe that BioViva will become a tremendously valuable company when new genes packages are identified that will enable even better augmentation.  This is virtual self-evolutionary, and the icing on the cake is that it doesn’t pollute the germ line, so it is simply an informed risk by a competent adult for themselves alone to take.

Finally, it appears that you are particularly irked because Ms Parrish is (according to you) going around “making clearly false statements.”  I think more charitably, you were willing to characterize them as “overblown” statements.  We both agree that I simply do not know enough to validate or invalidate your charge, but I will say that I believe that there is out there amazing genetic packages out that will give people amazing abilities.  The hitch is that I’ve (and a lot of other people) got to live long enough to see it happen.

“The above is still a little too abstract and perhaps even vague and could use an example. Picture the movies Avengers, Fantastic Four, Superman, Wolverine or X-Men. Now suppose that these movie characters did not have random gene modifications but that they were humans with deliberate gene modifications and also technological enhancements, similar to Iron Man.”

Response to “dobermanmac”

Good on you for keeping in shape. You are doing your patriotic duty. 😉

If Liz actually said that, “to her knowledge BioViva is the only company currently doing this” well, that’s not true.

Liz knows I am doing it. My company has been around years longer than BioViva.

Liz also knew I had tested a different therapy months ago.

Liz knows Jason Williams is doing it. (I am 99.9% sure that if this telomerase treatment really was done, it was Jason who delivered it.) Jason Williams is the one who actually does the real stuff. Liz is just a sales figure. I question if Jason has exercised good judgment with the telomerase gene. But, he doesn’t know everything, and he might have depended on Bill Andrews judgement overmuch without checking literature. He’s a busy practicing physician.

There is nothing particularly breakthrough about either telomerase, which is decades old, or follistatin, which had a company working on a gene therapy some years back. I talked to the CEO and the UCLA scientist working on that follistatin lentivirus delivered system. I should check back with them. The only thing new is that someone may have used telomerase which is probably quite dangerous.

If this sort of thing interests you, contact me, or else Jason. We develop these things and will advise you as well as we can.

Embryo modifications could create quasi X-men capabilities to some extent. 😊

As far as new gene packages are concerned, there are many already well characterized. I’m not going to list them here. I am tired of Liz and pals picking my brain. But as I said, we can talk.

Gene therapy does have limitations. It’s not like loading a new software program.

Mr Hanley,

Again, thank you for your informative posting.  The main reason I am writing this is to clarify my referal to Ms Parrish’s remark in the Singularity One on One interview ( ).

In my opinion, the context where she said that she thought BioViva was the only company doing this, is not that the gene package they are currently offering (hTERT and a proprietary myostatin inhibitor, in the same family with GDF-11) was unique, but that they were progressing commercially in a more aggressive fashion than any other company.

Let me refer to BioViva’s ethics page: ( ):

“BioViva believes everyone should have access to cutting-edge medical treatments, not just those who can afford it. New technologies rapidly become accessible to consumers, now more than ever…To hasten this process we intend to construct a manufacturing facility to significantly reduce the cost of our gene therapies. We have invested in mass production technologies such as bioreactors in order to produce more vectors reduce the final price for the consumer. We will continue to seek more efficient methods in our constant search to bring access to everyone.”

In other words, BioViva’s mission appears to be to rapidly go to market with genetic therapy treatments, and then to significantly reduce their cost and availability.  You cited your company Butterfly Sciences ( ), and Jason Williams is doing it, but are the treatments you are refining available to the public?  Is your mission to rapidly deploy them to as many consumers as you can reach?  Let me add that natural evolution is a very slow progress, so the idea of rapidly diffusing a useful gene throughout the genetic pool (of living people, not future generations, since adult genetic therapy does not pollute the germ line) is very very exciting to me.

One other issue is very important for me to clarify: the limitation of gene therapy.  You said “it is not like loading a new software program.”  Frankly, I can’t think of a better metaphor.  I define gene therapy in the current context as the adding of a gene package to a person’s genome.  As a consequence, when the cells with the added operating instructions divide, they eventually become the organism, with the added operating instructions.  My understanding is that we currently do not know the limitations of how the living organism would change when it’s genome is added to.

I think this is a very important point: we don’t know how added instructions will manifest.  Would the organism metamorphize into the virtually new genome’s expression?  How radically could an already living organism metamorphose?  What changes would kill the organism, or what genetic package would simply radically change it without killing it?

More elegantly put: if a person visited a “body shop,” and got a gene therapy to make them more cat-like, would they develope feline characteristics and maybe even start growing a tail?

Perhaps in the future gene therapies can shut off genes already present within a person’s genome.  Certainly the line between science fact and science fiction is not a brilliant one.  Frankly, I am a little squeamish getting too far out, since gene therapy is already a futuristic technology, and besides using “new gene packages, there are many already well characterized.

My personal belief is that cellular immortality ought to be the primary goal of research into adult genetic therapies, since I have a motto: Immortality first, and everything else second.

Response to “dobermanmac”

That ethics statement is another way of saying that they don’t appear to care about safety of subjects.

Refer to the primary article again. Actually read it.

No, it isn’t that simple. You have an extremely naive view of how gene therapy works - naive to the point of fairy-tale-like. Sorry to be a bit short with you, but you have to read better and understand that I am educating you. We are not having a debate on a subject where opinions of non-experts count for anything.

Mr Hanley,

Your reply was indeed short, but also insensitive and skeptical.  I took the liberty of running your words through Watson’s Personality Insight Service: “You are relatively unconcerned with both taking pleasure in life and helping others. You prefer activities with a purpose greater than just personal enjoyment.”

Frankly, I have a thick skin and don’t mind if you mistakenly nullified my viewpoint because “We are not having a debate on a subject where opinions of non-experts count for anything.”  In other words, you are an expert and I am not, therefore my opinion doesn’t count for spit.  Furthermore, let me note that you are equally derogatory and arrogant in respect to Liz Parrish. OK, I’ve dealt with this dismissive attitude before in experts, and I know how to address it.

Methods of gene therapy

“The following forms of gene therapy can be envisioned:

1. the introduction of a gene at an undefined place in the genome, when a functional genetic factor is missing (gene insertion)

2. selective replacement of an abnormal gene an own or foreign normal gene (gene-substitution)

3. selective reverse mutation of an abnormal gene into its original state or destruction of an abnormal gene (gene modification)

4. influencing the regulation of a specific gene

With the current available methods of genetic engineering it is possible to do…[only] gene addition.”

It appears Mr Hanley that you simply can’t imagine anything other than gene addition. It isn’t a matter of me reading better, and your short response certainly wasn’t education, but dismissive and demeaning.  If you look at the above methods of gene therapy, what I suggested is completely within the realm of the realistic, but just not possible yet with only gene insertion.  But, can you imagine the future, when all forms of gene therapy are within our reach?

Because you didn’t elaborate on what specifics in the BioViva ethics statement “don’t appear to care about safety of subjects,” I am at a loss to address your concerns.  Perhaps you feel that nothing short of regulation in the US is sufficient to address your concerns?

“The MIT Technology Review article notes that Parrish’s treatment might mark the start of an era in which people receive genetic modifications not just to treat disease, but to reverse aging.

Predictably, the article mentions “ethical” questions about how quickly such treatments should be tested in people and whether they ought to be developed outside the scrutiny of regulators.

Liz Parrish
BioViva CEO Liz Parrish
It appears, however, that Parrish could work around the predictably heavy scrutiny of US regulators by choosing to have her gene hacking sessions done abroad. Therefore, Parrish’s treatment might also mark the start of gene therapy tourism - a form of medical tourism motivated not by cheaper treatments abroad, but by the availability of advanced genetic therapies that are still banned in the home country.

“Gene-therapy preparations, which use a virus to shuttle DNA into human cells, could prove risky,” notes MIT Technology Review. “But the technology has advanced so far in the last decade that it is within reach of a small company.”“

Mr Parrish, you certainly have your opinion, and you are an expert, but are you going to nullify the following gentleman’s opinion too (after all he is an expert like you)?

“Matthew Scholz, CEO of biotech startup Immusoft, imagines that Parrish’s choice might inspire enthusiastic amateurs to try to modify their own DNA, thereby “shifting the balance of power to patients.”

More autonomy and power to patients, often oppressed by the official medical establishment, is urgently needed, and Parrish is to be praised for starting the DIY gene therapy wave by experimenting on herself, like Louis Pasteur did.”

Didn’t you say that you experimented upon yourself with gene therapy Mr Parrish?

I enjoyed the article and discussion really much! Love to see when people who are basically on the same side square it out due to “some” differences..

anyway.. what needs to be said is “poisoning the well”

I don’t believe that what Liz Parrish has done will poison the well for other companies that strive for anti-aging gene therapies. Even with all of the not absolutely correct things she said and not even if she gets tumors in the next 4 months (my mother developed those on Valproic acid) and dies in 12 months. The thing is - the well has already been poisoned due to history of quacks offering anti-aging snake-oil and gene therapy reapers due to dead patients. Really nothing worse can happen because the worst already did happen.

So talking about safety is simply .. well .. useless.. the data that can be obtained from Liz’s body surpasses any risk or any dead person (her) . So what if some of the population (who reads these kinds of science news anyway? My friends in the profession had no clue about it yet they read and study a lot) will think for a while that AAV hTERT is the next best thing since sliced bread? Population gets fed with over-hyped science news that turns out to be dud all the time. New battery technologies, new hairloss cures, looming climate catastrophes.. this is just the tip of the iceberg.

So Brian.. get pragmatic and enjoy the show. There’s a lot of useful scientific data that this kamikaze effort will generate (if she won’t hide in a forest after bad things start happening).

And as a programmer to programmer.. gene therapy is like adding a “plugin/extension/addon” to a program.. it’s the perfect analogy. Whoever came up with “loading new software program” must have been pretty lame!

Mr Kokles,

“And as a programmer to programmer.. gene therapy is like adding a “plugin/extension/addon” to a program.. it’s the perfect analogy. Whoever came up with “loading new software program” must have been pretty lame!”

“In computing, a plug-in (or plugin, add-in, addin, add-on, addon, or extension) is a software component that adds a specific feature to an existing computer program.”

In defense of my use of the characterization “loading a new software program,” in my metaphor was considering the existing genome as an operating system, and gene therapy as adding another computer program to it.  Instead, in your metaphor you are considering the genome as a computer program, and gene therapy as adding a plugin/extension/addon to it.

By the way, it is very interesting that you consider Ms Parrish’s decision to be patient zero with the BioViva gene therapy treatment (hTERT and a proprietary myostatin inhibitor) as a “kamikaze effort.”  You seem quite judgemental.

The plugin comment was a indirect joke at Brian’s other article - there are way too many ways to look at the software analogies so does it really matter how one describes it?... sort of a no true Scotsman debate that brings no resolution.

And the Kamikaze effort ... I do think that the telomere aimed gene therapy that Liz has undergone is very very dangerous. But I applaud her for the courage that she has underwent it. I personally would be kind of scarred to undergo a gene therapy like this, I’d be less scarred if I went the pharmaceutical route to lengthen my telomeres that only works on a temporary basis (Bill Andrews way, but what is he doing anyway these days? he said that he might have enough money in the half of this year to start progressing again…)

I know a few folks from the business that are dying to know what happens in a human in vivo, when telomeres get longer. If data from Liz shows some specific positive things it can kickstart many new efforts. But I also know a few from the business that only smirk.. they kind of think they have all the answers yet when we debated some of the older telomere intervention procedures long time ago they have not made correct guesses as to what would be later revealed in Depinho experiments or the older Geron experiments. I think I’m now old enough to be wise enough not to try to guess what happens because we know zilch what would happen in vivo.

There’s some very good reasons for people to find your article offensive. While I agree that telomerase based therapies are not ready for prime time, the focus on the purported unethical behavior of people like Liz is misguided. It is just as unethical and maybe even criminal that “establishment” scientists (and doctors) are maintaining that the best we can offer people for living a longer life is exercise. This response may be OK as a standard “do no harm”  answer for 80% of the uneducated population. It is bordering on criminal, however, that instead of pushing for therapies like calorie restriction, methionine restriction, rampamycin and metformin to be rapidly and robustly tested in large double blind population studies for life extension, scientists like yourself are obsessing about the likes of Liz and her admittedly far fetched claims. Bioviva and Liz’s stunts are a natural outgrowth of people’s frustration with an overly rigid and conservative medical establishment which shows a remarkable degree of bias against “acting” to make aging therapies a part of the mainstream discourse,  while espousing the virtues of “inaction” (“diet” and “exercise”). This is an absurd cognitive bias that I would expect scientific minded individuals to be aware of. The dangers of not experimenting and not taking risks are often as great as the dangers of experimenting.

What is the societal value of a doctor telling a 65 year old man who asks to be put on (off-label) rampamycin to “try to live longer”, that rampamycin has not been approved for such a use and that the best thing he can do to live longer is to exercise? The mortality risk to this individual (and to us all) rises with each year that passes reaching an exponential growth rate after age 60. Is it unethical to let this individual take rampamycin to try to live longer when it has been shown that this drug increases life expectancy in most animal species? Sure there is a risk involved, but what about the considerable risk of this individual dying of “natural causes” within the next 10 years as he nears the average (natural) life expectancy? I digress. The point is that if we are to have a conversation about what is unethical, there are much more serious ethical and arguably criminal omissions currently occurring in science.

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