3 ms·

glad to see some advancement in the gene therapy space. I think once people move past gene editing as "playing god", we will be able to get rid of advanced gene

by xyst 5y ago

glad to see some advancement in the gene therapy space. I think once people move past gene editing as "playing god", we will be able to get rid of advanced genetic diseases entirely (ie, muscular dystrophy) and edit our genes to be naturally resistant to todays and future diseases. Also I hope gene therapy becomes democratized. It shouldn't be limited to big Rx developing these solutions.

0x4d464d48 5y ago
"I think once people move past gene editing as "playing god", we will be able to get rid of advanced genetic diseases entirely (ie, muscular dystrophy) and edit our genes to be naturally resistant to todays and future diseases." I think the "go fast and break things" mindset is scarier here than the debates about whether or not we have the right to play God.
- somesortofthing 5y ago
  I used to think this way but honestly, given how poorly nature does in terms of creating genetic material for new people, I've come to believe that we have a pretty big margin for error. The harm done by a gung-ho attitude toward gene editing has to be compared to the harm done by allowing the "natural" course of events to continue.
  - 0x4d464d48 5y ago
    Look up elixir sulfanilamide and thalidomide. That's the sort of blood that writes regulations. Experimental medicine has a long, clumsy and cruel tradition.
    - solveit 5y ago
      And nature has a long, clumsy, cruel tradition of killing literally everyone in various unpleasant ways, usually before their time. There is a tradeoff and "optimize for making sure we never ever ever repeat the thalidomide fiasco again" is not the best strategy to take.
    - roywiggins 5y ago
      The Jesse Gelsinger case is probably the most relevant here. https://www.sciencehistory.org/distillations/the-death-of-jesse-gelsinger-20-years-later https://www.sciencehistory.org/distillations/the-death-of-je...
      - 0x4d464d48 5y ago
        Excellent citation. Thanks for this. "Meanwhile, journalists and federal health officials discovered several troubling lapses in the conduct of the study. For example, the researchers had earlier told the FDA they would tighten up the trial’s eligibility criteria, but they never followed through. When two patients suffered serious side effects, the scientists did not immediately inform the agency or put the study on hold as required. It turned out Jesse’s pretrial test results showed he had poor liver function, indicating he arguably shouldn’t have received the OTC gene injection. But perhaps most damning were failures in the informed-consent process. Researchers hadn’t told Jesse about the earlier patients’ side effects or about two lab monkeys killed by high doses of adenoviruses. If he had been properly briefed about these previous issues, he might have dropped out of the study and still be alive today. Wilson was also accused of a conflict of interest: he had a stake in the company that owned the gene-transfer technology and stood to benefit if the trial succeeded. ... The investigations drew attention to wider problems in oversight of gene-therapy experiments and human research generally. For example, the FDA and NIH revealed that 691 volunteers in gene-therapy experiments had either died or fallen ill in the seven years before Jesse’s death; only 39 of these incidents had been reported promptly as required. The agencies tightened monitoring of trials, increased inspections, and created a new system for reporting serious side effects, among other steps. Penn responded to the crisis by strengthening the institutional review boards that oversee its trials, putting in new protections for patients, and prohibiting researchers from having financial stakes in their trials." Truly nothing new under the sun.
    - csee 5y ago
      Look up the cheap antigen tests that were 80 percent effective and blocked by regulators in early 2020. How many people have needlessly and silently died because of excessive precautions and red tape? The opportunity cost deaths are hidden and unseen, but they're real all the same.
tediousdemise 5y ago
Genetics ftw. I firmly believe that consumer genetic tests, self-order lab tests, and overseas pharmacies will disrupt the corrupt healthcare system because they empower patients to treat themselves instead of resorting to conventional medicine where Big Pharma, insurance companies, and overpaid doctors gatekeep access to treatment. For 100 dollars, you can obtain a full copy of your genome from a service like 23andMe and run it across a parsing tool such as https://www.codegen.eu https://www.codegen.eu to find genetic predispositions to all kinds of medical maladies. I found numerous bad SNPs in my genetic data that I correlated to confirmed family cases. I also discovered genes I have that reduce my response to certain pharmaceuticals or cause harmful reactions. Why take a risky shotgun approach when you can know in advance if something will or will not work for you? It's literally like looking into a crystal ball of ailments that are plaguing you now or in the future. Forget about bouncing around from specialist to specialist for years and years; read your genome to get the answers you seek today. It's your source code.
- xyst 5y ago
  This. The days of going to a hospital where you might acquire a nosocomial infection (ie, "super bugs" like MRSA, VRSA) will be long gone. We thought robotic automation might be the job killer for healthcare, but it's really democratized gene therapies. Prevention will be the key, rather than reacting.
woeirua 5y ago
I don't understand the argument against "playing god." Frankly, almost everything we do is playing god in some way, shape, or form. There is no way the planet could feed this many humans, without humans actively shaping and altering almost every facet of the ecosystem. Humans have already played god and will continue to do so in ways that were unthinkable in years past.
- newyankee 5y ago
  I always view it as a form of gatekeeping

by xyst 5y ago

0x4d464d48 5y ago

"I think once people move past gene editing as "playing god", we will be able to get rid of advanced genetic diseases entirely (ie, muscular dystrophy) and edit our genes to be naturally resistant to todays and future diseases." I think the "go fast and break things" mindset is scarier here than the debates about whether or not we have the right to play God.

somesortofthing 5y ago
I used to think this way but honestly, given how poorly nature does in terms of creating genetic material for new people, I've come to believe that we have a pretty big margin for error. The harm done by a gung-ho attitude toward gene editing has to be compared to the harm done by allowing the "natural" course of events to continue.
- 0x4d464d48 5y ago
  Look up elixir sulfanilamide and thalidomide. That's the sort of blood that writes regulations. Experimental medicine has a long, clumsy and cruel tradition.
  - solveit 5y ago
    And nature has a long, clumsy, cruel tradition of killing literally everyone in various unpleasant ways, usually before their time. There is a tradeoff and "optimize for making sure we never ever ever repeat the thalidomide fiasco again" is not the best strategy to take.
  - roywiggins 5y ago
    The Jesse Gelsinger case is probably the most relevant here. https://www.sciencehistory.org/distillations/the-death-of-jesse-gelsinger-20-years-later https://www.sciencehistory.org/distillations/the-death-of-je...
    - 0x4d464d48 5y ago
      Excellent citation. Thanks for this. "Meanwhile, journalists and federal health officials discovered several troubling lapses in the conduct of the study. For example, the researchers had earlier told the FDA they would tighten up the trial’s eligibility criteria, but they never followed through. When two patients suffered serious side effects, the scientists did not immediately inform the agency or put the study on hold as required. It turned out Jesse’s pretrial test results showed he had poor liver function, indicating he arguably shouldn’t have received the OTC gene injection. But perhaps most damning were failures in the informed-consent process. Researchers hadn’t told Jesse about the earlier patients’ side effects or about two lab monkeys killed by high doses of adenoviruses. If he had been properly briefed about these previous issues, he might have dropped out of the study and still be alive today. Wilson was also accused of a conflict of interest: he had a stake in the company that owned the gene-transfer technology and stood to benefit if the trial succeeded. ... The investigations drew attention to wider problems in oversight of gene-therapy experiments and human research generally. For example, the FDA and NIH revealed that 691 volunteers in gene-therapy experiments had either died or fallen ill in the seven years before Jesse’s death; only 39 of these incidents had been reported promptly as required. The agencies tightened monitoring of trials, increased inspections, and created a new system for reporting serious side effects, among other steps. Penn responded to the crisis by strengthening the institutional review boards that oversee its trials, putting in new protections for patients, and prohibiting researchers from having financial stakes in their trials." Truly nothing new under the sun.
  - csee 5y ago
    Look up the cheap antigen tests that were 80 percent effective and blocked by regulators in early 2020. How many people have needlessly and silently died because of excessive precautions and red tape? The opportunity cost deaths are hidden and unseen, but they're real all the same.

tediousdemise 5y ago

Genetics ftw. I firmly believe that consumer genetic tests, self-order lab tests, and overseas pharmacies will disrupt the corrupt healthcare system because they empower patients to treat themselves instead of resorting to conventional medicine where Big Pharma, insurance companies, and overpaid doctors gatekeep access to treatment. For 100 dollars, you can obtain a full copy of your genome from a service like 23andMe and run it across a parsing tool such as https://www.codegen.eu https://www.codegen.eu to find genetic predispositions to all kinds of medical maladies. I found numerous bad SNPs in my genetic data that I correlated to confirmed family cases. I also discovered genes I have that reduce my response to certain pharmaceuticals or cause harmful reactions. Why take a risky shotgun approach when you can know in advance if something will or will not work for you? It's literally like looking into a crystal ball of ailments that are plaguing you now or in the future. Forget about bouncing around from specialist to specialist for years and years; read your genome to get the answers you seek today. It's your source code.

xyst 5y ago
This. The days of going to a hospital where you might acquire a nosocomial infection (ie, "super bugs" like MRSA, VRSA) will be long gone. We thought robotic automation might be the job killer for healthcare, but it's really democratized gene therapies. Prevention will be the key, rather than reacting.

woeirua 5y ago

I don't understand the argument against "playing god." Frankly, almost everything we do is playing god in some way, shape, or form. There is no way the planet could feed this many humans, without humans actively shaping and altering almost every facet of the ecosystem. Humans have already played god and will continue to do so in ways that were unthinkable in years past.

newyankee 5y ago
I always view it as a form of gatekeeping