6 ms·

Biotech CEO claims she is the first to undergo gene therapy to reverse aging

92 points by bussiere 11y ago

nefitty 11y ago
I will definitely be keeping an eye on how this develops. Parrish is so enthusiastic about her work it is contagious. I hope this project turns out positively, for her sake and the sake of the research.
- 88e282102ae2e5b 11y ago
  > she lacks formal scientific training > Telomerase ... is present in cells that can continue to divide indefinitely, like stem cells and tumors. Your cells dividing indefinitely is not the opposite of aging, it's cancer. This is completely quackery.
  - rewqfdsa 11y ago
    > Your cells dividing indefinitely is not the opposite of aging, it's cancer. Look at it this way: the Hayflick Limit on cellular replication limits act as a fail-safe in case other growth inhibition mechanisms fail. If a liver cell decides that it wants to be its own immortal organism but doesn't express telomerase, it won't get very far in its enterprise. The replication limit makes it more likely that we'll survive to reproductive age. On the other hand, the Hayflick Limit kills us. Evolution doesn't care much about this side effect, but we do. If we can suppress cancer other ways --- or hell, even if we can't --- NOPing out the Hayflick Limit safety code is worthwhile.
  - thaumasiotes 11y ago
    > Your cells dividing indefinitely is not the opposite of aging, it's cancer. No. As long as they divide on schedule in the amount they're supposed to, they're not cancer. Dividing indefinitely is the opposite of aging at the cell level; aging at the whole-organism level has some other stuff to it. I think there's so much emphasis on the cell division clock because we know what it is.
- adevine 11y ago
  > Parrish is so enthusiastic about her work it is contagious. Showmanship is not how we should evaluate clinical therapies.
xiaoma 11y ago
This is eerily similar to the background story of many a comic book super villain.
koopuluri 11y ago
> "if successful she plans to roll out a public offering in three to five years despite neither treatment being FDA approved" Is it legal to offer a product that hasn't gone through FDA as long as consumers sign their acknowledgement?
- maxerickson 11y ago
  If you do it outside the US the FDA is irrelevant. It might be necessary to be a little careful with what entity is promoting the treatment and so on.
- gojomo 11y ago
  Probably not in the US. But the workaround is already in the article: do it in another more-favorable jurisdiction. Medical tourism for price reasons is already a big thing. People are also traveling to Mexico or South Korea for stem-cell treatments unavailable in the US. Startups might also find US jurisdictions that want to carve out more experimental freedom than the FDA's defaults, as with stem cells in Texas: http://www.bloomberg.com/bw/articles/2013-01-03/stem-cell-showdown-celltex-vs-dot-the-fda http://www.bloomberg.com/bw/articles/2013-01-03/stem-cell-sh...
blazespin 11y ago
How is this irresponsible? It's her body. Yeeesh. She is brave to believe in her work. I don't think the article author is aware of how the cause of ulcers was proved and shared the 2005 Nobel prize. http://discovermagazine.com/2010/mar/07-dr-drank-broth-gave-ulcer-solved-medical-mystery http://discovermagazine.com/2010/mar/07-dr-drank-broth-gave-...
- epistasis 11y ago
  Some ways this is irresponsible, from the (much much better) Tech Review article: >Fossell, the anti-aging entrepreneur, says even if Parrish were to somehow succeed in slowing the aging of her body, an outcome he rated as unlikely, the experiment would have no impact because of how it was carried out. “The problem is that no one is going to believe them,” he says. “The credibility will be zero even if they are right on the money.” Also: > “We as a company have our own ethics,” she says, referring to what she calls the need for inexpensive gene therapy treatments. “I am certainly not going to ask someone’s permission to potentially create new industries and cures.” Anybody saying "we have our own ethics" is way way out there, it casts doubt on all of the rest of their endeavor.
  - narrator 11y ago
    So if it works, only the people who have adopted Liz Parrish's ethics and those who do not live under the rule of those who refuse to accept her ethics will be able to live forever. That's because, in the ethics of Fossell, some truths are not ethical to believe in, no matter what the evidence. They become ethical to believe in once the proper authorities have determined those truths to be ethical.
  - kbenson 11y ago
    > Anybody saying "we have our own ethics" is way way out there, it casts doubt on all of the rest of their endeavor. Everybody has slightly different ethics. She's just pointing out that she views the advancement in this field and the millions of people it could give longer life to if it comes about sooner as more important than the arguments against a human trial, and to make sure someone isn't being taken advantage of, she's doing it on herself. I'm not sure how to fault that.
reasonattlm 11y ago
BioViva is one of the small groups interested in bringing telomerase therapies to humans sooner rather than later. It seems they have started in on their small long-term trial of human gene therapy for telomerase activation, and have treated the first volunteer. I should say that at any given time there is a fairly large gap between what can be done in human medicine, the technology that actually exists and works, and what is being done in trials. Most of this gap is due to regulation, and the rest of it because development groups want to have a reasonable certainty that what they are doing actually works, does more good than harm, and so forth. The regulatory process might last a decade, while the actually useful part of that testing (does it basically work, and is the risk profile sufficiently defined and acceptable to patients) is only a few years. As the cost of research and development in the life sciences falls, it will become increasingly untenable that a huge ball and chain slows progress thanks to regulatory risk aversion, and a growing number of initiatives will forge ahead and build anyway. Some years ago I proposed the Vegas Group fable, something that I think will happen in the fullness of time: alternative roads that bypass official regulation in favor of faster progress, an inevitability in an environment of low-cost research. Also, I think, a necessity. What about the science here? I've never been a big fan of telomere lengthening approaches, as average telomere length as it is measured today in immune cells looks very much like a marker of the progress of aging, an end stage consequence far removed from root causes. Telomeres shorten with cell division and new long-telomere cells are delivered into tissues by stem cell populations. Thus average telomere length in immune cells reflects some combination of immune health and stem cell activity, both of which are known to decline with age. You can't argue with the fact that telomerase gene therapy has been shown to extend life in mice, however, though you can certainly note that the size of the effect has been getting smaller as the research groups have refined their data and approaches. How does this work to slow aging in mice? At this point I lump enhanced telomerase activity into the general category of approaches that either probably work or intend to work by boosting the activation of old stem cell populations, resulting in increased repair and tissue maintenance and thus a slower decline into frailty and organ failure. More telomerase doesn't seem to raise cancer risk in mice, but mice have very different telomere dynamics and cancer risk profiles than we humans. The fastest way to figure out what is going to happen in humans is of course to try it, and kudos to anyone volunteering at this stage, but I'd be waiting for a few more years of testing first in animal or tissue models closer to human telomere dynamics. In part that decision would be driven by the fact that I don't think that this is the best approach to move ahead with practical applications, to push ahead and get things done. I absolutely agree that pushing ahead to get things done needs to happen, but I'd rather see this sort of boldness for SENS treatments like senescent cell clearance. ------------ Digest of the Reddit AMA with the BioViva CEO: https://www.reddit.com/r/Futurology/comments/3ocsbi/ama_my_name_is_liz_parrish_ceo_of_bioviva_the/ https://www.reddit.com/r/Futurology/comments/3ocsbi/ama_my_n... I am patient zero. I will be 45 in January. I have aging as a disease. To take on this role myself was the only ethical choice. I am happy to step up. I do feel we can use these therapies in compassionate care scenarios now but we will have to work them back into healthier people as we see they work as preventive medicine. The genes targeted are human telomerase reverse transcriptase (hTERT) and follistatin (FST). In animal models neither FST nor hTERT have increased the risk of cancer. We expect to see the same result on myself, and to that effect we are measuring all known cancer biomarkers. The gene therapies on my body are to measure the effects on humans. There is plenty of animal research to support these gene therapies but no one was conducting human tests. We are using both visual biomarkers, MRI and a panel of blood and tissue testing including work on telomere length and epigenetic testing. We are collecting as much data as we can, but unfortunately we currently don't have the coverage rate for this therapy, how much of the tissue of the body is affected. Depending on the tissue and vector used we ultimately expect to see similar rates of transfection as seen in mice, which is somewhere between 5 to 60%. We are working as hard as we can to bring it to the world as quickly and safely as possible. We will will evaluate monthly and within 12 months we will have more data. If the results are good we hope to have something to the general public, that is cost acceptable, in 3-5 years. Our goal is to build laboratories that will have the mission of a gene therapy product at a reduced cost. Gene therapy technology is much like computing technology. We had to build the super computer which cost $8 million in 1960. Now everyone has technologies that work predictably and at a cost the average person can afford. We need to do the same with these therapies. What you will get in 3-5 years will be vastly more predictable and effective that what we are doing today and at a cost you or your insurance can cover. We need a lab that works solely to bringing those costs down. We would need about $1 - 1.5 million to build one lab to focus on this. We can expand as needed. I would love to crowdfund this project but I do not know how to get good results at that scale - I think the price tag is high for that modality. We are raising investment to do offshore clinical trials. Many USA companies do this. If we can cut costs we will be able to bring back a treatment that people can afford.
dbcooper 11y ago
Perhaps better to link to the original article at Technology Review: http://www.technologyreview.com/news/542371/a-tale-of-do-it-yourself-gene-therapy/#comments http://www.technologyreview.com/news/542371/a-tale-of-do-it-...
- dang 11y ago
  Yes. Url changed from http://bionicly.com/liz-parrish-gene-therapy/ http://bionicly.com/liz-parrish-gene-therapy/. From the guidelines: "Please submit the original source. If a post reports on something found on another site, submit the latter." https://news.ycombinator.com/newsguidelines.html https://news.ycombinator.com/newsguidelines.html
erikgaas 11y ago
One thing to be cognizant about is that cancer is really a disease caused by the reverse aging of particular cells. If you make a cell think it is too young it is going to become invasive. We don't normally think of embryonic development requiring invasive behavior of cells, but that is certainly the case. Take a look at the development of the cerebral cortex and how cells must travel through other layers to reach their destination. It appears that they are targeting telomerase which is very interesting and parallels cancer where its over-expression is used often as a marker. But then again telomerase under-expression can occur in early-stage cancer and is thought to contribute to genome instability/mutation to affect other genes before it is eventually over-expressed. So this kind of experiment is really exciting and will almost certainly give us insight into many different medical fields. I just hope that her experiment winds up on the preventative side of cancer rather than the causative one.
- narrator 11y ago
  No, cancer is caused by DNA damage. The longer a cell lives, the more damage it gathers, so if you make a cell immortal and the mechanisms the body has for killing malfunctioning cells or repairing damage to damaged DNA is disabled, weakened, or overwhelmed, then you get cancer.
  - technotony 11y ago
    Well, cancer is complicated. There are types that behave like embryo cells (including one benign type which can create hair or toe nails randomly in the body). The previous posters final comment is the critical one: let's hope she hasn't given herself cancer. Previous gene therapy trials were all stopped because of that risk. Current Crispr techniques (if that's what she used) aren't specific enough to avoid off target effects, those could easily cause cancer. I tend to be quite pro DIY medicine, but this still seems quite rash to me because of those risks.
  - PetitPrince 11y ago
    DNA damage can lead to the deregularization of various cell mechanisms, the ability of the cell to repair DNA being one of them. Only when several of those mechanisms go rogue you get cancer; having only one or two of them disabled is usually not sufficient. In your example, an immortal cell who cannot repair DNA or even identify damaged DNA wouldn't be that dangerous, since it doesn't have the signal to reproduce wildly. See D. Hanahan and R. Weinberg "Hallmarks of Cancer: The Next Generation" for a scholarly (and quite readable) review http://www.sciencedirect.com/science/article/pii/S0092867411001279 http://www.sciencedirect.com/science/article/pii/S0092867411...
gojomo 11y ago
I love how this mixes the "n=1" self-experimentation of Seth Roberts [1] with the "not just the President, but also a client" salesmanship of Sy Sperling [2]. [1] https://en.wikipedia.org/wiki/Seth_Roberts https://en.wikipedia.org/wiki/Seth_Roberts [2] https://youtu.be/IuRLGdGnqSU?t=47s https://youtu.be/IuRLGdGnqSU?t=47s https://en.wikipedia.org/wiki/Hair_Club https://en.wikipedia.org/wiki/Hair_Club
JackuB 11y ago
Publicity stunt instead of scientific paper in reviewed journal, "we don't care about FDA approval" attitude, undisclosed location in latin America - sounds totally credible.
- mcnamaratw 11y ago
  What? Tech Review not credible? Surely you jest!
  - JackuB 11y ago
    Tech Review just reports on news here - announcement came from Reddit thread by Parrish afaik.
    - mcnamaratw 11y ago
      I may have made my point too dryly for online. Tech Review sometimes veers towards Wired Magazine's airspace.
- anonmeow 11y ago
  If governments and FDAs of the developed world were more cooperative it wouldn't happen this way. Startups don't have a billion dollars for FDA trials.
- reasonattlm 11y ago
  It is a different way of going about bootstrapping funding for a new venture in medicine. The gene therapies used are well exercised in animal studies. At some point you have to move to humans, but that costs money. This is one approach to raising the funding to perform small trials, you get the first trial member done first since that's what you have the funds for, and move on from there. Parrish has been a member of the community interested in aging and biotech for some years. Look at the the advisory board of BioViva. You don't magically get George Church on your board without having paid your dues. Meanwhile if you happen to be someone who disagrees with the existence and current practice of the FDA - and this may be a minority position, but it isn't a small minority position - then linking this all with regulatory arbitrage makes perfect sense. There is an enormous gap between what can be done safely (large set) and what the FDA permits (small set), and with the cost of biotechnology and medicine falling rapidly, sooner or later something has to give. The FDA is all about maintaining the position of FDA bureaucrats. That's the only real way to interpret the 2.5x cost increase in trials over the past decade. They are willing to suppress as much medical progress as it takes in order to look like people who are doing a non-phony-baloney job. But medicine is inherently risky. There will always be people who die as a result of new therapies: it should be up to the patients to make informed decisions, not a matter of bureaucrats pushing the cost of development upwards to a point at which only a trickle of new treatments emerges on the other side. The public doesn't react to the invisible death toll of people who would have been saved by the medicines that are no longer cost-effective to develop. It's a sad situation.
rewqfdsa 11y ago
You have to admit that FDA approval can be onerous, and that a "mad scientist" way of demonstrating technology can be an effective way to build public demand. Consider another technology: safe, effective, and reversible male birth control [1]. It's been used in India for decades, but happens to be illegal in the US right now due to the slow and expensive nature of the approval process. [1] https://en.wikipedia.org/wiki/Reversible_inhibition_of_sperm_under_guidance https://en.wikipedia.org/wiki/Reversible_inhibition_of_sperm...
JackuB 11y ago
Just a note: I haven't seen it mentioned in article, but "gene therapy" was discovered in 70s and it's widely used https://en.wikipedia.org/wiki/Gene_therapy https://en.wikipedia.org/wiki/Gene_therapy - what's new here is use for anti-aging and DIY nature of treatment. I feel it's important to judge weight of this story.
ilaksh 11y ago
Give her credit for taking a risk with her own health. Although of course the animal studies haven't shown cancer development. But still a brave thing to do, and obviously worth it given the existing animal studies. I believe that regulations are holding back therapy development, especially in any area that is not already popular. I think this is an issue with government in general, and we will need a totally new type of government if we are going to get a moral society that integrates with technology.
anonmeow 11y ago
There is a quite large database of genes that affect aging in model organisms: http://genomics.senescence.info/genes/stats.php http://genomics.senescence.info/genes/stats.php In this database there are 126 mouse genes. It looks like (science funding) politics is the only reason we are not testing how these genes work in large mammals and primates. The public is scared of genetic engineering.
- rewqfdsa 11y ago
  > The public is scared of genetic engineering. And nuclear power, and geo-engineering. Public hysteria is placing us at great risk on numerous fronts. Ultimately, though, I'm optimistic. Not once in human history has anyone been able to suppress technology once it became both possible to make and profitable to produce. In this instance, the Chinese will probably beat us to gene therapy technology, and we'll desperately play catch-up once we see the difference it makes in life outcome.
  - thaumasiotes 11y ago
    > Not once in human history has anyone been able to suppress technology once it became both possible to make and profitable to produce. How do you feel about Japanese suppression of firearms?
    - rewqfdsa 11y ago
      If there had been a major war, you'd have seen them come right back. It's not as if the Japanese simply forgot how to make the things during the Edo period.
deleted 11y ago
[deleted]
- rewqfdsa 11y ago
  Do you have any idea how difficult it is to actually maintain a low-calorie diet? It's simply not a realistic option for most people. Yes, with sufficient willpower, it'd be possible in theory, but that's like saying that unaided human flight is possible with sufficient muscular power. Dietary restriction just isn't in us.
  - YeGoblynQueenne 11y ago
    Anorexics seem to do it just fine, except of course maybe they overdo it a tad.
    - rewqfdsa 11y ago
      And the universal increase in obesity in the west doesn't matter? The idea that voluntary dietary restrictions might have any effect on public health is ludicrous. If that strategy could work, it would have already worked. Do you think many obese people _want_ to be obese?
    - DanBC 11y ago
      People with anorexia may create altered gut biome that strengthens the anorexia. http://www.nature.com/tp/journal/v4/n10/full/tp201498a.html http://www.nature.com/tp/journal/v4/n10/full/tp201498a.html Also, it's a mental illness so it's not a fucking choice.
      - YeGoblynQueenne 11y ago
        Er, I'm aware? Look, my point is that it's possible to eat fewer calories, but it's not necessarily easy to do it in a way that doesn't harm you. It's not suppressing appetite that is really complicated, it's reducing calories and staying on top in terms of nutrition.
  - mrdrozdov 11y ago
YeGoblynQueenne 11y ago
> Not once in human history has anyone been able to suppress technology once it became both possible to make and profitable to produce. Yay, thank god. Otherwise it might take us whole aeons to heat the planet beyond the point we can live on it.
- rewqfdsa 11y ago
  There are lots of approaches to eliminating excess CO2 that we could talk about if people like you didn't reflexively smear technology as some great devil. Voluntary CO2 emission reduction looks so far like a doomed effort that goes against every incentive built into human nature.
  - dang 11y ago
    > if people like you didn't reflexively smear technology Personal rudeness is not ok on HN, even when you think someone's view is wrong.
- YeGoblynQueenne 11y ago
  People like me? What people like me? Ones with more than half a brain? And btw, I _love_ that trick you do, where you write "dosh" and it looks like "technology". I need to learn to do that.
  - rewqfdsa 11y ago
    Your comment is constructive and contributes to the conversation.
  - YeGoblynQueenne 11y ago
    Am I the one who made things personal with "people like you"?
  - dang 11y ago
    Please don't be personally rude on HN, even when someone else started it.
- 11y ago

92 points by bussiere 11y ago

I will definitely be keeping an eye on how this develops. Parrish is so enthusiastic about her work it is contagious. I hope this project turns out positively, for her sake and the sake of the research.

88e282102ae2e5b 11y ago
> she lacks formal scientific training > Telomerase ... is present in cells that can continue to divide indefinitely, like stem cells and tumors. Your cells dividing indefinitely is not the opposite of aging, it's cancer. This is completely quackery.
- rewqfdsa 11y ago
  > Your cells dividing indefinitely is not the opposite of aging, it's cancer. Look at it this way: the Hayflick Limit on cellular replication limits act as a fail-safe in case other growth inhibition mechanisms fail. If a liver cell decides that it wants to be its own immortal organism but doesn't express telomerase, it won't get very far in its enterprise. The replication limit makes it more likely that we'll survive to reproductive age. On the other hand, the Hayflick Limit kills us. Evolution doesn't care much about this side effect, but we do. If we can suppress cancer other ways --- or hell, even if we can't --- NOPing out the Hayflick Limit safety code is worthwhile.
- thaumasiotes 11y ago
  > Your cells dividing indefinitely is not the opposite of aging, it's cancer. No. As long as they divide on schedule in the amount they're supposed to, they're not cancer. Dividing indefinitely is the opposite of aging at the cell level; aging at the whole-organism level has some other stuff to it. I think there's so much emphasis on the cell division clock because we know what it is.
adevine 11y ago
> Parrish is so enthusiastic about her work it is contagious. Showmanship is not how we should evaluate clinical therapies.

xiaoma 11y ago

This is eerily similar to the background story of many a comic book super villain.

koopuluri 11y ago

> "if successful she plans to roll out a public offering in three to five years despite neither treatment being FDA approved" Is it legal to offer a product that hasn't gone through FDA as long as consumers sign their acknowledgement?

maxerickson 11y ago
If you do it outside the US the FDA is irrelevant. It might be necessary to be a little careful with what entity is promoting the treatment and so on.
gojomo 11y ago
Probably not in the US. But the workaround is already in the article: do it in another more-favorable jurisdiction. Medical tourism for price reasons is already a big thing. People are also traveling to Mexico or South Korea for stem-cell treatments unavailable in the US. Startups might also find US jurisdictions that want to carve out more experimental freedom than the FDA's defaults, as with stem cells in Texas: http://www.bloomberg.com/bw/articles/2013-01-03/stem-cell-showdown-celltex-vs-dot-the-fda http://www.bloomberg.com/bw/articles/2013-01-03/stem-cell-sh...

blazespin 11y ago

How is this irresponsible? It's her body. Yeeesh. She is brave to believe in her work. I don't think the article author is aware of how the cause of ulcers was proved and shared the 2005 Nobel prize. http://discovermagazine.com/2010/mar/07-dr-drank-broth-gave-ulcer-solved-medical-mystery http://discovermagazine.com/2010/mar/07-dr-drank-broth-gave-...

epistasis 11y ago
Some ways this is irresponsible, from the (much much better) Tech Review article: >Fossell, the anti-aging entrepreneur, says even if Parrish were to somehow succeed in slowing the aging of her body, an outcome he rated as unlikely, the experiment would have no impact because of how it was carried out. “The problem is that no one is going to believe them,” he says. “The credibility will be zero even if they are right on the money.” Also: > “We as a company have our own ethics,” she says, referring to what she calls the need for inexpensive gene therapy treatments. “I am certainly not going to ask someone’s permission to potentially create new industries and cures.” Anybody saying "we have our own ethics" is way way out there, it casts doubt on all of the rest of their endeavor.
- narrator 11y ago
  So if it works, only the people who have adopted Liz Parrish's ethics and those who do not live under the rule of those who refuse to accept her ethics will be able to live forever. That's because, in the ethics of Fossell, some truths are not ethical to believe in, no matter what the evidence. They become ethical to believe in once the proper authorities have determined those truths to be ethical.
- kbenson 11y ago
  > Anybody saying "we have our own ethics" is way way out there, it casts doubt on all of the rest of their endeavor. Everybody has slightly different ethics. She's just pointing out that she views the advancement in this field and the millions of people it could give longer life to if it comes about sooner as more important than the arguments against a human trial, and to make sure someone isn't being taken advantage of, she's doing it on herself. I'm not sure how to fault that.

reasonattlm 11y ago

BioViva is one of the small groups interested in bringing telomerase therapies to humans sooner rather than later. It seems they have started in on their small long-term trial of human gene therapy for telomerase activation, and have treated the first volunteer. I should say that at any given time there is a fairly large gap between what can be done in human medicine, the technology that actually exists and works, and what is being done in trials. Most of this gap is due to regulation, and the rest of it because development groups want to have a reasonable certainty that what they are doing actually works, does more good than harm, and so forth. The regulatory process might last a decade, while the actually useful part of that testing (does it basically work, and is the risk profile sufficiently defined and acceptable to patients) is only a few years. As the cost of research and development in the life sciences falls, it will become increasingly untenable that a huge ball and chain slows progress thanks to regulatory risk aversion, and a growing number of initiatives will forge ahead and build anyway. Some years ago I proposed the Vegas Group fable, something that I think will happen in the fullness of time: alternative roads that bypass official regulation in favor of faster progress, an inevitability in an environment of low-cost research. Also, I think, a necessity. What about the science here? I've never been a big fan of telomere lengthening approaches, as average telomere length as it is measured today in immune cells looks very much like a marker of the progress of aging, an end stage consequence far removed from root causes. Telomeres shorten with cell division and new long-telomere cells are delivered into tissues by stem cell populations. Thus average telomere length in immune cells reflects some combination of immune health and stem cell activity, both of which are known to decline with age. You can't argue with the fact that telomerase gene therapy has been shown to extend life in mice, however, though you can certainly note that the size of the effect has been getting smaller as the research groups have refined their data and approaches. How does this work to slow aging in mice? At this point I lump enhanced telomerase activity into the general category of approaches that either probably work or intend to work by boosting the activation of old stem cell populations, resulting in increased repair and tissue maintenance and thus a slower decline into frailty and organ failure. More telomerase doesn't seem to raise cancer risk in mice, but mice have very different telomere dynamics and cancer risk profiles than we humans. The fastest way to figure out what is going to happen in humans is of course to try it, and kudos to anyone volunteering at this stage, but I'd be waiting for a few more years of testing first in animal or tissue models closer to human telomere dynamics. In part that decision would be driven by the fact that I don't think that this is the best approach to move ahead with practical applications, to push ahead and get things done. I absolutely agree that pushing ahead to get things done needs to happen, but I'd rather see this sort of boldness for SENS treatments like senescent cell clearance. ------------ Digest of the Reddit AMA with the BioViva CEO: https://www.reddit.com/r/Futurology/comments/3ocsbi/ama_my_name_is_liz_parrish_ceo_of_bioviva_the/ https://www.reddit.com/r/Futurology/comments/3ocsbi/ama_my_n... I am patient zero. I will be 45 in January. I have aging as a disease. To take on this role myself was the only ethical choice. I am happy to step up. I do feel we can use these therapies in compassionate care scenarios now but we will have to work them back into healthier people as we see they work as preventive medicine. The genes targeted are human telomerase reverse transcriptase (hTERT) and follistatin (FST). In animal models neither FST nor hTERT have increased the risk of cancer. We expect to see the same result on myself, and to that effect we are measuring all known cancer biomarkers. The gene therapies on my body are to measure the effects on humans. There is plenty of animal research to support these gene therapies but no one was conducting human tests. We are using both visual biomarkers, MRI and a panel of blood and tissue testing including work on telomere length and epigenetic testing. We are collecting as much data as we can, but unfortunately we currently don't have the coverage rate for this therapy, how much of the tissue of the body is affected. Depending on the tissue and vector used we ultimately expect to see similar rates of transfection as seen in mice, which is somewhere between 5 to 60%. We are working as hard as we can to bring it to the world as quickly and safely as possible. We will will evaluate monthly and within 12 months we will have more data. If the results are good we hope to have something to the general public, that is cost acceptable, in 3-5 years. Our goal is to build laboratories that will have the mission of a gene therapy product at a reduced cost. Gene therapy technology is much like computing technology. We had to build the super computer which cost $8 million in 1960. Now everyone has technologies that work predictably and at a cost the average person can afford. We need to do the same with these therapies. What you will get in 3-5 years will be vastly more predictable and effective that what we are doing today and at a cost you or your insurance can cover. We need a lab that works solely to bringing those costs down. We would need about $1 - 1.5 million to build one lab to focus on this. We can expand as needed. I would love to crowdfund this project but I do not know how to get good results at that scale - I think the price tag is high for that modality. We are raising investment to do offshore clinical trials. Many USA companies do this. If we can cut costs we will be able to bring back a treatment that people can afford.

dbcooper 11y ago

Perhaps better to link to the original article at Technology Review: http://www.technologyreview.com/news/542371/a-tale-of-do-it-yourself-gene-therapy/#comments http://www.technologyreview.com/news/542371/a-tale-of-do-it-...

dang 11y ago
Yes. Url changed from http://bionicly.com/liz-parrish-gene-therapy/ http://bionicly.com/liz-parrish-gene-therapy/. From the guidelines: "Please submit the original source. If a post reports on something found on another site, submit the latter." https://news.ycombinator.com/newsguidelines.html https://news.ycombinator.com/newsguidelines.html

erikgaas 11y ago

One thing to be cognizant about is that cancer is really a disease caused by the reverse aging of particular cells. If you make a cell think it is too young it is going to become invasive. We don't normally think of embryonic development requiring invasive behavior of cells, but that is certainly the case. Take a look at the development of the cerebral cortex and how cells must travel through other layers to reach their destination. It appears that they are targeting telomerase which is very interesting and parallels cancer where its over-expression is used often as a marker. But then again telomerase under-expression can occur in early-stage cancer and is thought to contribute to genome instability/mutation to affect other genes before it is eventually over-expressed. So this kind of experiment is really exciting and will almost certainly give us insight into many different medical fields. I just hope that her experiment winds up on the preventative side of cancer rather than the causative one.

narrator 11y ago
No, cancer is caused by DNA damage. The longer a cell lives, the more damage it gathers, so if you make a cell immortal and the mechanisms the body has for killing malfunctioning cells or repairing damage to damaged DNA is disabled, weakened, or overwhelmed, then you get cancer.
- technotony 11y ago
  Well, cancer is complicated. There are types that behave like embryo cells (including one benign type which can create hair or toe nails randomly in the body). The previous posters final comment is the critical one: let's hope she hasn't given herself cancer. Previous gene therapy trials were all stopped because of that risk. Current Crispr techniques (if that's what she used) aren't specific enough to avoid off target effects, those could easily cause cancer. I tend to be quite pro DIY medicine, but this still seems quite rash to me because of those risks.
- PetitPrince 11y ago
  DNA damage can lead to the deregularization of various cell mechanisms, the ability of the cell to repair DNA being one of them. Only when several of those mechanisms go rogue you get cancer; having only one or two of them disabled is usually not sufficient. In your example, an immortal cell who cannot repair DNA or even identify damaged DNA wouldn't be that dangerous, since it doesn't have the signal to reproduce wildly. See D. Hanahan and R. Weinberg "Hallmarks of Cancer: The Next Generation" for a scholarly (and quite readable) review http://www.sciencedirect.com/science/article/pii/S0092867411001279 http://www.sciencedirect.com/science/article/pii/S0092867411...

gojomo 11y ago

I love how this mixes the "n=1" self-experimentation of Seth Roberts [1] with the "not just the President, but also a client" salesmanship of Sy Sperling [2]. [1] https://en.wikipedia.org/wiki/Seth_Roberts https://en.wikipedia.org/wiki/Seth_Roberts [2] https://youtu.be/IuRLGdGnqSU?t=47s https://youtu.be/IuRLGdGnqSU?t=47s https://en.wikipedia.org/wiki/Hair_Club https://en.wikipedia.org/wiki/Hair_Club

JackuB 11y ago

Publicity stunt instead of scientific paper in reviewed journal, "we don't care about FDA approval" attitude, undisclosed location in latin America - sounds totally credible.

mcnamaratw 11y ago
What? Tech Review not credible? Surely you jest!
- JackuB 11y ago
  Tech Review just reports on news here - announcement came from Reddit thread by Parrish afaik.
  - mcnamaratw 11y ago
    I may have made my point too dryly for online. Tech Review sometimes veers towards Wired Magazine's airspace.
anonmeow 11y ago
If governments and FDAs of the developed world were more cooperative it wouldn't happen this way. Startups don't have a billion dollars for FDA trials.
reasonattlm 11y ago
It is a different way of going about bootstrapping funding for a new venture in medicine. The gene therapies used are well exercised in animal studies. At some point you have to move to humans, but that costs money. This is one approach to raising the funding to perform small trials, you get the first trial member done first since that's what you have the funds for, and move on from there. Parrish has been a member of the community interested in aging and biotech for some years. Look at the the advisory board of BioViva. You don't magically get George Church on your board without having paid your dues. Meanwhile if you happen to be someone who disagrees with the existence and current practice of the FDA - and this may be a minority position, but it isn't a small minority position - then linking this all with regulatory arbitrage makes perfect sense. There is an enormous gap between what can be done safely (large set) and what the FDA permits (small set), and with the cost of biotechnology and medicine falling rapidly, sooner or later something has to give. The FDA is all about maintaining the position of FDA bureaucrats. That's the only real way to interpret the 2.5x cost increase in trials over the past decade. They are willing to suppress as much medical progress as it takes in order to look like people who are doing a non-phony-baloney job. But medicine is inherently risky. There will always be people who die as a result of new therapies: it should be up to the patients to make informed decisions, not a matter of bureaucrats pushing the cost of development upwards to a point at which only a trickle of new treatments emerges on the other side. The public doesn't react to the invisible death toll of people who would have been saved by the medicines that are no longer cost-effective to develop. It's a sad situation.

rewqfdsa 11y ago

You have to admit that FDA approval can be onerous, and that a "mad scientist" way of demonstrating technology can be an effective way to build public demand. Consider another technology: safe, effective, and reversible male birth control [1]. It's been used in India for decades, but happens to be illegal in the US right now due to the slow and expensive nature of the approval process. [1] https://en.wikipedia.org/wiki/Reversible_inhibition_of_sperm_under_guidance https://en.wikipedia.org/wiki/Reversible_inhibition_of_sperm...

JackuB 11y ago

Just a note: I haven't seen it mentioned in article, but "gene therapy" was discovered in 70s and it's widely used https://en.wikipedia.org/wiki/Gene_therapy https://en.wikipedia.org/wiki/Gene_therapy - what's new here is use for anti-aging and DIY nature of treatment. I feel it's important to judge weight of this story.

ilaksh 11y ago

Give her credit for taking a risk with her own health. Although of course the animal studies haven't shown cancer development. But still a brave thing to do, and obviously worth it given the existing animal studies. I believe that regulations are holding back therapy development, especially in any area that is not already popular. I think this is an issue with government in general, and we will need a totally new type of government if we are going to get a moral society that integrates with technology.

anonmeow 11y ago

There is a quite large database of genes that affect aging in model organisms: http://genomics.senescence.info/genes/stats.php http://genomics.senescence.info/genes/stats.php In this database there are 126 mouse genes. It looks like (science funding) politics is the only reason we are not testing how these genes work in large mammals and primates. The public is scared of genetic engineering.

rewqfdsa 11y ago
> The public is scared of genetic engineering. And nuclear power, and geo-engineering. Public hysteria is placing us at great risk on numerous fronts. Ultimately, though, I'm optimistic. Not once in human history has anyone been able to suppress technology once it became both possible to make and profitable to produce. In this instance, the Chinese will probably beat us to gene therapy technology, and we'll desperately play catch-up once we see the difference it makes in life outcome.
- thaumasiotes 11y ago
  > Not once in human history has anyone been able to suppress technology once it became both possible to make and profitable to produce. How do you feel about Japanese suppression of firearms?
  - rewqfdsa 11y ago
    If there had been a major war, you'd have seen them come right back. It's not as if the Japanese simply forgot how to make the things during the Edo period.

deleted 11y ago

[deleted]

rewqfdsa 11y ago
Do you have any idea how difficult it is to actually maintain a low-calorie diet? It's simply not a realistic option for most people. Yes, with sufficient willpower, it'd be possible in theory, but that's like saying that unaided human flight is possible with sufficient muscular power. Dietary restriction just isn't in us.
- YeGoblynQueenne 11y ago
  Anorexics seem to do it just fine, except of course maybe they overdo it a tad.
  - rewqfdsa 11y ago
    And the universal increase in obesity in the west doesn't matter? The idea that voluntary dietary restrictions might have any effect on public health is ludicrous. If that strategy could work, it would have already worked. Do you think many obese people _want_ to be obese?
  - DanBC 11y ago
    People with anorexia may create altered gut biome that strengthens the anorexia. http://www.nature.com/tp/journal/v4/n10/full/tp201498a.html http://www.nature.com/tp/journal/v4/n10/full/tp201498a.html Also, it's a mental illness so it's not a fucking choice.
    - YeGoblynQueenne 11y ago
      Er, I'm aware? Look, my point is that it's possible to eat fewer calories, but it's not necessarily easy to do it in a way that doesn't harm you. It's not suppressing appetite that is really complicated, it's reducing calories and staying on top in terms of nutrition.
- mrdrozdov 11y ago

YeGoblynQueenne 11y ago

> Not once in human history has anyone been able to suppress technology once it became both possible to make and profitable to produce. Yay, thank god. Otherwise it might take us whole aeons to heat the planet beyond the point we can live on it.

rewqfdsa 11y ago
There are lots of approaches to eliminating excess CO2 that we could talk about if people like you didn't reflexively smear technology as some great devil. Voluntary CO2 emission reduction looks so far like a doomed effort that goes against every incentive built into human nature.
- dang 11y ago
  > if people like you didn't reflexively smear technology Personal rudeness is not ok on HN, even when you think someone's view is wrong.
YeGoblynQueenne 11y ago
People like me? What people like me? Ones with more than half a brain? And btw, I _love_ that trick you do, where you write "dosh" and it looks like "technology". I need to learn to do that.
- rewqfdsa 11y ago
  Your comment is constructive and contributes to the conversation.
- YeGoblynQueenne 11y ago
  Am I the one who made things personal with "people like you"?
- dang 11y ago
  Please don't be personally rude on HN, even when someone else started it.
11y ago