Re: [DIYbio] Human Gene Editing - Considerations

On 04/28/2016 10:01 AM, Philipp Boeing wrote:
> 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?

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.

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