Human Gene Editing - Considerations

[Philipp Boeing]

Hi everyone, 

We have been asked to talk about human gene editing (in particular triggered by CRISPR) in front of a science and ethics committee. Ideally we'd like to include some responses from the community, in particular we are interested in social perspectives by different stakeholders in the DIYbio community, so:

- what is your perspective and vision for ethical, legal, social issues and openness of human gene editing

- what kind of potential futures do you imagine for human gene editing and DIYbio?

- how do you think human gene editing should be used? 

- should there be restrictions, and what should they be?

- do you consider human gene editing a right and or a risk? 

Please feel free to brainstorm!

Many thanks,

Philipp

[Mega [Andreas Stuermer]]

>what is your perspective and vision for ethical, legal, social issues and openness of human gene editing

I consider it a crime against humanity if you know that your child has a disease mutation and you are forbidden to correct it. Everybody should have the right to be born healthy. *

*assuming that nickase crispr is safe enough to not introduce secondary mutations. But even if it does - nature makes mutation all the time. If you sit in a plane, your sperm is altered by radiation. Off-targtet effects of crispr are no worse or better - are they?? 
http://ieet.org/index.php/IEET/print/10561
Chad White: "When an egg and a sperm get together, there are over 74 trillion different chromosomal combinations. This is the main reason why siblings from the same two parents can be so different."

>what kind of potential futures do you imagine for human gene editing and DIYbio?

Anyways, there will be people who DIY, and why not. If they use non-viral vectors and it cannot spread to other people, it is their right to modify their bodies (as sport, tattos, drugs, etc do)

>how do you think human gene editing should be used? 

Wouldn't it be patronizing to put restrictions in place, as long as no other people are ivolved or threatened?

>should there be restrictions, and what should they be?

Tricky question. Yes, there should be regulations. Obviously. But lawmakers will make them anyways, and probably much too strong restrictions.

[Reason]

The main point here is that this technology will very quickly be as
pervasive, cheap, and widely available as the first stem cell therapies.
This means that it cannot be forbidden. That just won't work. Regions
outside those placing a mortarium will forge ahead. We saw that with
stem cell treatments fifteen to twenty years ago.

When gene therapy costs $10-20,000, and this I should note is pretty
much already here or very close to here given that the BioViva
experiment only cost a few multiples of that, then you'll have scenarios
like this:

https://www.fightaging.org/archives/2016/03/developing-the-art-of-group-buy-medical-tourism-100-people-traveling-to-pay-10-20000-for-a-rejuvenation-therapy/

At this sort of cost, DIY coordinated efforts are very plausible. If
your jurisdiction disallows it, go elsewhere to carry out the work. Take
a busman's holiday.

The best thing that regulators can do is get out of the way. Of course
they will not, because their positions more or less depend on them
getting in the way, so the same stupid situation will repeat in which
the US and similar regions directly or indirectly make such treatments
illegal, while some forms of treatment are widely available in other
parts of the world.

Gene therapy is not magic. All medical technology is a service, and as
such provision of that service can be governed by standard contract law,
and standard law for liability and harm. Of course politicians and
regulators exist to make things complicated and produce new problems, so
no double we'll be seeing all sorts of legislative grandstanding on this
issue as the scope of what could be done with gene therapy, and how
cheaply it could be done, becomes clear.

If I go back through the Fight Aging! archives, I can point out fifty
genes that could - if animal studies pan out - be targets for producing
useful human enhancements, ranging from less decline of function in the
aging liver through to cataract resistance and halving the ischemic
damage following stroke. That's not even to talk about the SENS
rejuvenation therapy classes that can be based on gene therapy. The
myostatin/follistatin gene therapies and telomerase are just the small
tip of a very, very large iceberg.

So no restrictions. Let this be an energetic market of competing
offerings, where providers tell you what genes they can alter, testers
can assay how well it works, and the data in the research community to
back up any particular offering is there to find. Let people choose and
do their own assessment of risk and reward.

Reason

[Jake]

Regulation of medical therapies has NEVER produced a positive result, and ALWAYS produces a chilling effect on the science.  Some basic standards can be helpful, but as mentioned our tort system is so overbearing already that additional regulation simply can't have any positive effect.

I don't understand how scientists keep going along with regulations that always produce negative results and have never produced anything positive.  You ought to consider it your duty to point this out in no uncertain terms.

You have to consider what the end result of regulation is... you are forcibly robbing people of something they believe is appropriate and valuable to their health.  That's not hyperbole either.  The end result is cops kicking your door in and robbing you of your medicine at gunpoint.  People tend to forget that when they're on their soapbox talking about helping protect people from themselves.

[Mega [Andreas Stuermer]]

>I don't understand how scientists keep going along with regulations that always produce negative results and have never produced anything positive.  You ought to consider it your >duty to point this out in no uncertain terms.

 

Then the only point for doing research is because you are passionate about it, and to get funding. Pretty pointless if the promising therapies never get allowed

>You have to consider what the end result of regulation is... you are forcibly robbing people of something they believe is appropriate and valuable to their health.  That's not >hyperbole either.  The end result is cops kicking your door in and robbing you of your medicine at gunpoint.  People tend to forget that when they're on their soapbox talking about >helping protect people from themselves.

While it is true that the government shall protect its non biology educated people from harming themselves, a biologist may know the risk of a therapy and should have the choice to take it. 

There should be a kind of driver's licence for medicine, by which you show enough knowledge to test therapies