<story><title>In a First, US Doctors Use Crispr Tool to Treat Patient with Genetic Disorder</title><url>https://www.npr.org/sections/health-shots/2019/07/29/744826505/sickle-cell-patient-reveals-why-she-is-volunteering-for-landmark-gene-editing-st</url></story><parent_chain><item><author>0xffff2</author><text>You didn&amp;#x27;t actually tell us why it&amp;#x27;s irresponsible. Is there a real risk of them hurting anyone but themselves?</text></item><item><author>dekhn</author><text>People who do this are usually irresponsible and don&amp;#x27;t even know whether they&amp;#x27;ve achieved their goal or not.&lt;p&gt;&amp;quot;&amp;quot;&amp;quot;Just to make sure this is really clear because people have been angry about this ever being tested in more humans. This will not be used in humans again until significantly more testing is done and the manufacturing protocol is massively refined. This could mean years before another test is conducted. More tests will need to be done in animal models as well. Maybe we&amp;#x27;ll do away with the viral aspect all together and completely overhaul the DNA. The reason this video was posted was because I want this to be an open source technology. If you have suggestions for how it can be improved, leave it in the comments.&amp;quot;&amp;quot;&amp;quot;&lt;p&gt;I spent 20 years of my life working towards gene therapy and to see idiots do stuff like this (in an incompenent and unconvincing way) is so frustrating.</text></item><item><author>krick</author><text>Reminds me: this guy used gene therapy to cure himself of lactose intolerance quite a while ago. Not sure how common it actually is among biohackers.&lt;p&gt;&lt;a href=&quot;https:&amp;#x2F;&amp;#x2F;www.youtube.com&amp;#x2F;watch?v=J3FcbFqSoQY&quot; rel=&quot;nofollow&quot;&gt;https:&amp;#x2F;&amp;#x2F;www.youtube.com&amp;#x2F;watch?v=J3FcbFqSoQY&lt;/a&gt;</text></item></parent_chain><comment><author>DecayingOrganic</author><text>A neuroscientist (nate1212) on reddit offered the following reasons:&lt;p&gt;&lt;pre&gt;&lt;code&gt;  - He just possibly infected his whole digestive system. Not just small intestine, but stomach 
    as well. Furthermore, AAV can potentially exhibit transcytosis through epithelial layers, 
    suggesting that it&amp;#x27;s possible the virus infected more than just his digestive system.

  - He did not determine an appropriate dose, and so he likely infected with a HUGE genetic 
    payload. Overexpression with AAV can kill infected cells, which means this man is risking 
    his digestive lining.

  - Neither the promoter nor the encoded protein itself are human, potentially risking 
    (possibly severe) autoimmune reaction.

  - There are few&amp;#x2F;no long-term studies on effects of AAV integration and expression in humans. 
    There is indeed evidence that AAV increases risk of cancer, almost certainly in a dose- 
    dependent manner.

  - AAVs could integrate randomly into your genome in low frequencies (0.1% to 1%), meaning that they could just by 
    chance disrupt a gene you really need to not get cancer.
&lt;/code&gt;&lt;/pre&gt;
The person in the video also suggested &amp;quot;trials for volunteers&amp;quot; (on his reddit post), but immediately backtracked on that after he learned that people cannot legally consent to such experiments.</text></comment>
<story><title>In a First, US Doctors Use Crispr Tool to Treat Patient with Genetic Disorder</title><url>https://www.npr.org/sections/health-shots/2019/07/29/744826505/sickle-cell-patient-reveals-why-she-is-volunteering-for-landmark-gene-editing-st</url></story><parent_chain><item><author>0xffff2</author><text>You didn&amp;#x27;t actually tell us why it&amp;#x27;s irresponsible. Is there a real risk of them hurting anyone but themselves?</text></item><item><author>dekhn</author><text>People who do this are usually irresponsible and don&amp;#x27;t even know whether they&amp;#x27;ve achieved their goal or not.&lt;p&gt;&amp;quot;&amp;quot;&amp;quot;Just to make sure this is really clear because people have been angry about this ever being tested in more humans. This will not be used in humans again until significantly more testing is done and the manufacturing protocol is massively refined. This could mean years before another test is conducted. More tests will need to be done in animal models as well. Maybe we&amp;#x27;ll do away with the viral aspect all together and completely overhaul the DNA. The reason this video was posted was because I want this to be an open source technology. If you have suggestions for how it can be improved, leave it in the comments.&amp;quot;&amp;quot;&amp;quot;&lt;p&gt;I spent 20 years of my life working towards gene therapy and to see idiots do stuff like this (in an incompenent and unconvincing way) is so frustrating.</text></item><item><author>krick</author><text>Reminds me: this guy used gene therapy to cure himself of lactose intolerance quite a while ago. Not sure how common it actually is among biohackers.&lt;p&gt;&lt;a href=&quot;https:&amp;#x2F;&amp;#x2F;www.youtube.com&amp;#x2F;watch?v=J3FcbFqSoQY&quot; rel=&quot;nofollow&quot;&gt;https:&amp;#x2F;&amp;#x2F;www.youtube.com&amp;#x2F;watch?v=J3FcbFqSoQY&lt;/a&gt;</text></item></parent_chain><comment><author>dekhn</author><text>actually I think the biggest risk is that it will create the impression in people that gene therapy is easy and that a random person on the street can just inject something into them and cure a disease.  every self-injecting biohacker I&amp;#x27;ve ever seen basically doesn&amp;#x27;t even know scientifically speaking whether they had the effect that they thought they did an experiment.  contrast this to real gene therapy researchers who have to go through careful clinical trials and do a lot of statistics just to prove that they did what they said they did.  the reason that we make them do that is because it&amp;#x27;s all too easy to fool yourself things like placebo effects and self bias.  legitimate researchers go to extensive lengths to demonstrate that the procedure they did did what they said they thought it was going to do and then it didn&amp;#x27;t have side effects. none of the self biohackers have done that.</text></comment>