5 ms·

One Man’s Quest to Hack His Own Genes

86 points by saycheese 10y ago

hprotagonist 10y ago
>Hanley says he did not secure the approval of the FDA before carrying out his experiment either. The agency requires companies to seek an authorization called an investigational new drug application, or IND, before administering any novel drug or gene therapy to people. “They said ‘You need an IND’ and I said, ‘No, I don’t,’” recalls Hanley, who traded e-mails with officials at the federal agency. He argued that self-experiments should be exempt, in part because they don’t pose any risk to the public. Until you start modifying the germ line, of course.
- dekhn 10y ago
  I read the whole article and Hanley's comments in the comment section (boy, did he hate the author of the article). I think he's being incredibly naive and overly optimistic. I say that as somebody who's wanted to see gene therapy be successful for a long time (and who learned that solving this problem is far harder than electroporating your cells.
- x1798DE 10y ago
  Posing a risk to your potential immediate descendants hardly counts as "the public", and you probably don't want to start down the road of enforcing that people don't have the right to do things to themselves which have the risk of possibly being teratogenic as if it's a public health threat.
frgtpsswrdlame 10y ago
Reminds me a lot of the TDCS people.
- LordKano 10y ago
  Just wait until they combine their efforts.
- smnplk 10y ago
  Any tdcs kits on the market worth buying ?
reasonattlm 10y ago
As I've been saying for the past couple of years, gene therapies are straightforward enough and cheap enough to carry out that people are doing it, usually quietly, but it is happening. You only have to be connected enough to know a biotechnologist or two with the right skills, as the example here shows. The stage of the adventurous and the self-experimenters is an important part of the development of any new medical technology, helping to overcome institutional reluctance while gathering initial data on how best to approach such treatments in practice. The next part of the process, something that does requires much greater funding and participation from the research and development community, will happen over the next few years; it involves making the therapies more robust, the outcomes more reliable, and assembling the suite of tools and clinics needed for those tasks. That is certainly the goal of BioViva, and as they move forward, others will join them. There is more than enough evidence for the potential utility of enhancement gene therapies based on producing greater muscle growth and improved metabolism via increased follistatin or myostatin knockout, ranging from numerous animal studies to existing natural human and animal mutants to myostatin antibody trials. There is also considerable interest in telomerase gene therapies, though I'd like to wait for more data on that front before diving in myself, given the potential cancer risk. Once these initial approaches are out there, available, and the methodologies of gene therapy have progressed to the point at which there is reliably comprehensive cell coverage - especially in stem cells, as that will determine how lasting the effect is - then a score of other genes bear further investigation and consideration as targets for enhancement therapies. While I applaud those who set out to undergo gene therapy today, as their work is necessary to move matters along in this age of overabundant caution and oppressive regulation of every activity, I can't say as I think the fellow here made a good choice of gene. This has the look of a more sophisticated form of the hormone therapies practiced over the past few decades, approaches that really don't have a good impact on aging, and outside of correcting deficiencies are not something that should benefit or is expected to benefit someone in normal health for their age. Increased growth hormone, if anything, is exactly the opposite of what animal and human studies suggest is good for longevity.
- throwawaymandf 10y ago
  there i also a not as small as one may think group of people with genetic intersex conditions. It is possible to be reproductive physically a different sex to one's chromosomes, in certain conditions, and viably fertile also. Yet this is just one to highlight which is arguably very difficult for those affected to openly seek treatment but for whom the quality of life to even imagine having a family without passing on those genes would be a immense quality of life improvement, even saving immeasurable mental and emotion anguish. Positive outcomes - even the chance of successful results might massively outweigh any ethics perceived to be contrary to making a attempt at genetic self modification. Unfortunately such people rarely have any (open regarding their condition) interface with the world and laws permit still for those who underwent surgery in infancy to be kept unaware if they do not themselves discover e.g. "residual organs". When I first considered this, someone I used to know well was raised as a boy, until her teens. She was lucky. Some I am quite sure can live live completely confused, disassociated with reality because they are raised if not even to conform then assuming gender behaviour that can lead to at best deep uncertainty and at worst real mental health problems (of physical origin, and it is possible even for ovarian cells to co-exist within testicles producing progesterone and hormonal cycles that are thoroughly destabilising, potentially with calamitous effect. I am such a person. This organisation, below, provides the clearest information I discovered, having reached the second half of my life before by accident of a infection, I learned my actual sex and it was physically real, manifest, hidden (by massive cognitive dissonance and then my 30s spent as a almost unhinged hypochondriac) by my family who created outrageous trouble to avoid conveying any basic detail whatsoever, even when I was clearly emotionally breaking down continuously my family were too scared for imaginary reprisals to inform me so I might attempt to deal with it. I had the opposite reaction to my family's fears: I simply wept for months out of relief, and conveniently had amateurishly studied lots of psychology and psychiatry in the vain hope f deciphering my family's behaviour towards me, which study permitted me to grapple with reality very effectively. It means something when decades of anguish is not any person's fault no matter the pain. But my discover was 18 months ago, and no amount of begging, truly begging, grovelling, has even gained me elementary healthcare needs such as handling infections or averting recurrence. Sure, I have a functional mind I hope still potentially evident, but I have been met with the most consistent humiliation when in need possible. I am risking poor taste in humor but Chelsea Manning was for a time my private nemesis. My family contrived to have me imprisoned and I was acquitted comprehensively, without any need t refer the reality their behaviour had been outrageously abusive, and so I am treated as a mental trauma case or tolerated at the very best. I probably shall have to write the book to one day make this story accessible, beyond this comment - I have had zero problems with openness which I felt required lest I bury a dangerous amount in my head risking genuine mental health worries later on. But ironically most of the ease has so far been because of disbelief. I did not believe until long past my "redundant organs" had been convulsing dramatically and in excruciating pain for many months to resuscitate themselves and regain bloodflow. Disused musculature atrophies and solidifies. I believe my abdominal muscles had contracted so mkuch they crushed my lower spine near my sacrum, and I literally unwound and gained 2 inches in height i had strangely lost since my late teens. Maybe my poor taste in humor was not welcome, when frustrated I quipped "but at least now I know why some little old ladies end up shrinking and bent over... and they had more action than i had in the just ast 5 decades. I have no idea if there is anything more I would willingly answer if anyone was curious, but the sole consideration I have now is, late in life as it may be: is it possible for me to have children wh are not affected by my genetics? I'm literally posting this from a throwaway with little concern mainly because of the character of HN is not one I fear in any way, but driven by despair, for I am acutely depressed and recently gave up even trying to obtain any help. The onlykind on offer is strictly to treat my medical condition as a mental healthy problem, and it simply is not wise to pursue any course that will tend inevitably to mis-diagnosis. Prior to my unknown sex regaining life within my body, my health was terrifyingly poor.Young lads in their 20s asked if I was 30, whereas 6 months before I was assumed to be 10 years above my age, being a long way past 30. Solely I believe because my unknown body was no longer putrefying decaying or whatever happens when a set of female sexual organs (seemingly pretty complete) are sewn shut as son after birth as practicable. I think I have enough to begin a new career related to what I learned. But all I want to know, please, lest there be no peace in my heart or mind, is can I have normal kids? I read these areas of science in not prayer lest I permit unfounded optimism, but in conscientious thought, what risks do I trade for the sake of a child of my own? I would be far from alone the organisation relevant to this can be fund at www.rarechromo.org (I should add also that my family, to avert potential discover of my real physical sex, promoted questions abut my mental health as part of what I think was a extraordinary level of abuse. I have no record of MH issues, friends I grew up with reached the absolute top of the related professions and would not even diagnose something like bi-polar disorders. At times one begs for diagnosis. Maybe not coincidentally both friends quit from exalted positions in psycho-pharma test and research and psychiatry respectively and I strongly suspect they had ethical misgivings; and they left really exalted positions for their age at their peak, certainly no hint of any cloud over either in any way) I ended up in jail because that was definitely preferable to accepting other forms of "justice", when frankly the entirety of the situation was nothing more than abuse on a whole other level of me, whilst they kept secret the very reason I was so vulnerable. (I thought as a man, but reacted as a woman, in many cases - that is to neat a explanation, I am still overwhelmed by reappraisal of my entire life, and suffered extreme memory problems, one f the first i wrote up in detail read back to me as if it was a mental segfault.; I had lost many many years of my memory prior to this stage. Anyhow, one day a book, definitely. I fear for who else may be similar, that they had not the resources nor capability I had to merely survive. Whilst incarcerated I was defrauded of absolutely everything. But, well, so another startup required....)
kumarski 10y ago
7 Billion People on Planet Earth 3 Billionish Genetic Base Pairs 15,000 disease modalities-ish(and many that are obfuscated or clustered as one disease) 60,000 genetic marker tests on the market. 8-10 new ones each day. Knowing what they actually do? --- Costs Billions.
- tudorw 10y ago
  add in phenotype, microbiota, mitochrondrial DNA, behaviour , environmental and societal factors, we have some way to go....
gravelc 10y ago
He's not 'hacking his own genes' though, is he? There's no modification of his germ cells, nor is there stable incorporation of the exogenous material into the genome of the affected cells - more just transient expression of the protein he's interested in. Giving the extraordinary complexity of the ageing process, with the interplay between multiple genes, each with multiple splice variants and post-translation modifications, and whose expression is modulated by both genetic and epigenetic factors, the chance of success with this approach is minimal.
- tmearnest 10y ago
  It's an interesting first step to hacking one's own genes, though. It makes me wonder if it would be possible to transfect human skin cells in situ with a plasmid containing a gene for a fluorescent protein. If possible, it would be the nerdiest of nerd tattoos.
microcolonel 10y ago
I find it almost offensive when they entertain that it is the public's business to dictate what one man does to a small section of his bodily tissue. Human life is not precious anymore. If somebody wants to risk their life for scientific progress, I feel that we should support them instead of discouraging them. Just as we did when life was more precious.
xiaoma 10y ago
This is a bold step on the path towards comic book super-villains existing in the real world.
Sarki 10y ago
Am I the only one to foresee that such changes can do way more harm than good? As comments went on a previous post on a similar topic: Genetic changes are a lot like assembler software changes. The best part? In living things there's very little documentation, based on "poor" reverse engineering (as we know little about it).
- gravelc 10y ago
  I agree - we're a long long way off being able to accurately predict the impacts of genetic changes, particularly given effects like pleiotrophy. We still don't even really understand why a tiny worm with around 1000 cells (C. elegans) has roughly the same number of genes as a human being. Sure, at the cellular level, the complexity of the two organisms is much the same, but at the macro level, it's not even close. Obviously all the information to build the organism is in the germ cells, but discrete genes are just a part of the equation. In my opinion, as someone why tries to work this stuff out for a living, we are many years away from grasping how it all fits together. Until then, I'd be wary of modifying myself except in the most dire of circumstances.
  - cixin 10y ago
    We don't really understand how most of the treatments we have work. We have data, we have in many cases some ideas, but we don't know. Take Psoriasis as an example, doctors are still prescribing coal tar based treatments. I guess they are ~100 years old. They don't work very well, and people don't really know why they should work at all. Pretty much all Psoriasis treatments are like this, even the more recent ones. They interfere with some pathway related to the immune system... but we don't really understand why they work. So we don't really understand "how it all fits together" for current treatments. It's still reasonable to use them if they are relatively safe, and work. Same is true of gene therapies. Mostly we figure out that things work/are safe through experimentation. Not through totally understanding the system.
- cixin 10y ago
  Realistically, what harm can the experiments described in the article do to the general population? It's so hard to do anything, even design diagnostic tests, that requires FDA approval that personally I'd avoid any startup that had that on their route to revenue. It's kind of a shame, and countries where it's easier to develop new treatments and tests are likely to take the lead.

86 points by saycheese 10y ago

>Hanley says he did not secure the approval of the FDA before carrying out his experiment either. The agency requires companies to seek an authorization called an investigational new drug application, or IND, before administering any novel drug or gene therapy to people. “They said ‘You need an IND’ and I said, ‘No, I don’t,’” recalls Hanley, who traded e-mails with officials at the federal agency. He argued that self-experiments should be exempt, in part because they don’t pose any risk to the public. Until you start modifying the germ line, of course.

dekhn 10y ago
I read the whole article and Hanley's comments in the comment section (boy, did he hate the author of the article). I think he's being incredibly naive and overly optimistic. I say that as somebody who's wanted to see gene therapy be successful for a long time (and who learned that solving this problem is far harder than electroporating your cells.
x1798DE 10y ago
Posing a risk to your potential immediate descendants hardly counts as "the public", and you probably don't want to start down the road of enforcing that people don't have the right to do things to themselves which have the risk of possibly being teratogenic as if it's a public health threat.

frgtpsswrdlame 10y ago

Reminds me a lot of the TDCS people.

LordKano 10y ago
Just wait until they combine their efforts.
smnplk 10y ago
Any tdcs kits on the market worth buying ?

reasonattlm 10y ago

As I've been saying for the past couple of years, gene therapies are straightforward enough and cheap enough to carry out that people are doing it, usually quietly, but it is happening. You only have to be connected enough to know a biotechnologist or two with the right skills, as the example here shows. The stage of the adventurous and the self-experimenters is an important part of the development of any new medical technology, helping to overcome institutional reluctance while gathering initial data on how best to approach such treatments in practice. The next part of the process, something that does requires much greater funding and participation from the research and development community, will happen over the next few years; it involves making the therapies more robust, the outcomes more reliable, and assembling the suite of tools and clinics needed for those tasks. That is certainly the goal of BioViva, and as they move forward, others will join them. There is more than enough evidence for the potential utility of enhancement gene therapies based on producing greater muscle growth and improved metabolism via increased follistatin or myostatin knockout, ranging from numerous animal studies to existing natural human and animal mutants to myostatin antibody trials. There is also considerable interest in telomerase gene therapies, though I'd like to wait for more data on that front before diving in myself, given the potential cancer risk. Once these initial approaches are out there, available, and the methodologies of gene therapy have progressed to the point at which there is reliably comprehensive cell coverage - especially in stem cells, as that will determine how lasting the effect is - then a score of other genes bear further investigation and consideration as targets for enhancement therapies. While I applaud those who set out to undergo gene therapy today, as their work is necessary to move matters along in this age of overabundant caution and oppressive regulation of every activity, I can't say as I think the fellow here made a good choice of gene. This has the look of a more sophisticated form of the hormone therapies practiced over the past few decades, approaches that really don't have a good impact on aging, and outside of correcting deficiencies are not something that should benefit or is expected to benefit someone in normal health for their age. Increased growth hormone, if anything, is exactly the opposite of what animal and human studies suggest is good for longevity.

throwawaymandf 10y ago
there i also a not as small as one may think group of people with genetic intersex conditions. It is possible to be reproductive physically a different sex to one's chromosomes, in certain conditions, and viably fertile also. Yet this is just one to highlight which is arguably very difficult for those affected to openly seek treatment but for whom the quality of life to even imagine having a family without passing on those genes would be a immense quality of life improvement, even saving immeasurable mental and emotion anguish. Positive outcomes - even the chance of successful results might massively outweigh any ethics perceived to be contrary to making a attempt at genetic self modification. Unfortunately such people rarely have any (open regarding their condition) interface with the world and laws permit still for those who underwent surgery in infancy to be kept unaware if they do not themselves discover e.g. "residual organs". When I first considered this, someone I used to know well was raised as a boy, until her teens. She was lucky. Some I am quite sure can live live completely confused, disassociated with reality because they are raised if not even to conform then assuming gender behaviour that can lead to at best deep uncertainty and at worst real mental health problems (of physical origin, and it is possible even for ovarian cells to co-exist within testicles producing progesterone and hormonal cycles that are thoroughly destabilising, potentially with calamitous effect. I am such a person. This organisation, below, provides the clearest information I discovered, having reached the second half of my life before by accident of a infection, I learned my actual sex and it was physically real, manifest, hidden (by massive cognitive dissonance and then my 30s spent as a almost unhinged hypochondriac) by my family who created outrageous trouble to avoid conveying any basic detail whatsoever, even when I was clearly emotionally breaking down continuously my family were too scared for imaginary reprisals to inform me so I might attempt to deal with it. I had the opposite reaction to my family's fears: I simply wept for months out of relief, and conveniently had amateurishly studied lots of psychology and psychiatry in the vain hope f deciphering my family's behaviour towards me, which study permitted me to grapple with reality very effectively. It means something when decades of anguish is not any person's fault no matter the pain. But my discover was 18 months ago, and no amount of begging, truly begging, grovelling, has even gained me elementary healthcare needs such as handling infections or averting recurrence. Sure, I have a functional mind I hope still potentially evident, but I have been met with the most consistent humiliation when in need possible. I am risking poor taste in humor but Chelsea Manning was for a time my private nemesis. My family contrived to have me imprisoned and I was acquitted comprehensively, without any need t refer the reality their behaviour had been outrageously abusive, and so I am treated as a mental trauma case or tolerated at the very best. I probably shall have to write the book to one day make this story accessible, beyond this comment - I have had zero problems with openness which I felt required lest I bury a dangerous amount in my head risking genuine mental health worries later on. But ironically most of the ease has so far been because of disbelief. I did not believe until long past my "redundant organs" had been convulsing dramatically and in excruciating pain for many months to resuscitate themselves and regain bloodflow. Disused musculature atrophies and solidifies. I believe my abdominal muscles had contracted so mkuch they crushed my lower spine near my sacrum, and I literally unwound and gained 2 inches in height i had strangely lost since my late teens. Maybe my poor taste in humor was not welcome, when frustrated I quipped "but at least now I know why some little old ladies end up shrinking and bent over... and they had more action than i had in the just ast 5 decades. I have no idea if there is anything more I would willingly answer if anyone was curious, but the sole consideration I have now is, late in life as it may be: is it possible for me to have children wh are not affected by my genetics? I'm literally posting this from a throwaway with little concern mainly because of the character of HN is not one I fear in any way, but driven by despair, for I am acutely depressed and recently gave up even trying to obtain any help. The onlykind on offer is strictly to treat my medical condition as a mental healthy problem, and it simply is not wise to pursue any course that will tend inevitably to mis-diagnosis. Prior to my unknown sex regaining life within my body, my health was terrifyingly poor.Young lads in their 20s asked if I was 30, whereas 6 months before I was assumed to be 10 years above my age, being a long way past 30. Solely I believe because my unknown body was no longer putrefying decaying or whatever happens when a set of female sexual organs (seemingly pretty complete) are sewn shut as son after birth as practicable. I think I have enough to begin a new career related to what I learned. But all I want to know, please, lest there be no peace in my heart or mind, is can I have normal kids? I read these areas of science in not prayer lest I permit unfounded optimism, but in conscientious thought, what risks do I trade for the sake of a child of my own? I would be far from alone the organisation relevant to this can be fund at www.rarechromo.org (I should add also that my family, to avert potential discover of my real physical sex, promoted questions abut my mental health as part of what I think was a extraordinary level of abuse. I have no record of MH issues, friends I grew up with reached the absolute top of the related professions and would not even diagnose something like bi-polar disorders. At times one begs for diagnosis. Maybe not coincidentally both friends quit from exalted positions in psycho-pharma test and research and psychiatry respectively and I strongly suspect they had ethical misgivings; and they left really exalted positions for their age at their peak, certainly no hint of any cloud over either in any way) I ended up in jail because that was definitely preferable to accepting other forms of "justice", when frankly the entirety of the situation was nothing more than abuse on a whole other level of me, whilst they kept secret the very reason I was so vulnerable. (I thought as a man, but reacted as a woman, in many cases - that is to neat a explanation, I am still overwhelmed by reappraisal of my entire life, and suffered extreme memory problems, one f the first i wrote up in detail read back to me as if it was a mental segfault.; I had lost many many years of my memory prior to this stage. Anyhow, one day a book, definitely. I fear for who else may be similar, that they had not the resources nor capability I had to merely survive. Whilst incarcerated I was defrauded of absolutely everything. But, well, so another startup required....)

kumarski 10y ago

7 Billion People on Planet Earth 3 Billionish Genetic Base Pairs 15,000 disease modalities-ish(and many that are obfuscated or clustered as one disease) 60,000 genetic marker tests on the market. 8-10 new ones each day. Knowing what they actually do? --- Costs Billions.

tudorw 10y ago
add in phenotype, microbiota, mitochrondrial DNA, behaviour , environmental and societal factors, we have some way to go....

gravelc 10y ago

He's not 'hacking his own genes' though, is he? There's no modification of his germ cells, nor is there stable incorporation of the exogenous material into the genome of the affected cells - more just transient expression of the protein he's interested in. Giving the extraordinary complexity of the ageing process, with the interplay between multiple genes, each with multiple splice variants and post-translation modifications, and whose expression is modulated by both genetic and epigenetic factors, the chance of success with this approach is minimal.

tmearnest 10y ago
It's an interesting first step to hacking one's own genes, though. It makes me wonder if it would be possible to transfect human skin cells in situ with a plasmid containing a gene for a fluorescent protein. If possible, it would be the nerdiest of nerd tattoos.

microcolonel 10y ago

I find it almost offensive when they entertain that it is the public's business to dictate what one man does to a small section of his bodily tissue. Human life is not precious anymore. If somebody wants to risk their life for scientific progress, I feel that we should support them instead of discouraging them. Just as we did when life was more precious.

xiaoma 10y ago

This is a bold step on the path towards comic book super-villains existing in the real world.

Sarki 10y ago

Am I the only one to foresee that such changes can do way more harm than good? As comments went on a previous post on a similar topic: Genetic changes are a lot like assembler software changes. The best part? In living things there's very little documentation, based on "poor" reverse engineering (as we know little about it).

gravelc 10y ago
I agree - we're a long long way off being able to accurately predict the impacts of genetic changes, particularly given effects like pleiotrophy. We still don't even really understand why a tiny worm with around 1000 cells (C. elegans) has roughly the same number of genes as a human being. Sure, at the cellular level, the complexity of the two organisms is much the same, but at the macro level, it's not even close. Obviously all the information to build the organism is in the germ cells, but discrete genes are just a part of the equation. In my opinion, as someone why tries to work this stuff out for a living, we are many years away from grasping how it all fits together. Until then, I'd be wary of modifying myself except in the most dire of circumstances.
- cixin 10y ago
  We don't really understand how most of the treatments we have work. We have data, we have in many cases some ideas, but we don't know. Take Psoriasis as an example, doctors are still prescribing coal tar based treatments. I guess they are ~100 years old. They don't work very well, and people don't really know why they should work at all. Pretty much all Psoriasis treatments are like this, even the more recent ones. They interfere with some pathway related to the immune system... but we don't really understand why they work. So we don't really understand "how it all fits together" for current treatments. It's still reasonable to use them if they are relatively safe, and work. Same is true of gene therapies. Mostly we figure out that things work/are safe through experimentation. Not through totally understanding the system.
cixin 10y ago
Realistically, what harm can the experiments described in the article do to the general population? It's so hard to do anything, even design diagnostic tests, that requires FDA approval that personally I'd avoid any startup that had that on their route to revenue. It's kind of a shame, and countries where it's easier to develop new treatments and tests are likely to take the lead.