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I was very interested in your situation. What is the patenting scheme you have
in mind? Exclusive license holders? Do you have any policy about how you are
going to price whatever medicines you come up with, competitive bidding,
what's the economic model?
Good question. First of all, even though we will own these patents, and we
will have exclusive license, we will make them available to academics at no
charge, we want to help foster research as fast as possible. Wew ant to make
them widely available. How are we dealing with commercial partners? So, we
would want to have partners that we thought would move the fastest or make the
largest investments themselves. But we will also have callback provisions, so
if they stop performing, we could pull it back and license it ourselves. We
will not be going to the lowest bidder, we will be going to who can do it as
rapidly as possible.
With sequencing getting so cheap that the bottleneck is going to be recruiting
participants and data analysis, I wanted to start with the first one: how are
you going to get the.. so you got the power taht you need in these studies? -
Raymond McCauley
Um, I think each disease is going to be different. In the case of teh
childhood cancer community, we already have a very active clinical oncology
group, so they actually recruit their participants into clinical trials as
soon as they are in the hospital before they leave, so in that case to get
samples, we just work closely with the COG, in order to obtain the samples. In
most cases of the person getting on a trial, the parents will already have
made a consent for rearch. It's not really an issue.
I am more interested in your case on how you guys are recruiting folks from
these rare diseases, and .. into the community. Yeah, that's a whole different
conversation, we've obviously discovered some interesting things-
misannotations abuot some of the diseases in the literature, etc., so there's
a lot of about thsi that is going to continue to be ongoing research, and
again one of these reasons to keep it NPO is so that we never loose that bent,
because there's still a lot to be learned about these rare diseases.
On the question of the licensing. One of the thoughts though is that, by
others, about becoming self-sustaining. One thing that struck me in the
busienss world and going into the NPO world, many of these disease
organizations that have been around for 5 or 6 decades can't erally show much
progress, and it struck us that it was important we have some sort of revenue
coming back, that if we were really creating value, then there should be some
sort of compensation for that, so that we can become self-funding, and the
agreements we negotiate with the university, from any licensing revenue that
does come out, we will cover our out of pocket costs for patenting, but the
50% of 60% of it will come back to funding future research, and the other 50%
goes back to universities. It's just that we want to become self-sustaining on
our own to fund further research.
I wear two hats. One is to install collctive intelligence platforms for the
Millineium Projects, one is in Korea, one is in Quoate. In 1983, my father
passed away from a leukemia, and his doctor assured me that this didn't run in
the family. Then I was diagnosed in the same disease in 1989. So the
background research shows that leukemia runs in families, but not by genetic
means. Hereditary homochromotosis is.. so I chose the therapy path, which was
not given, I was told that I was.. transplant.. damned if I was going to sit
in front of the radioactive isotope. Interferon.. the other shoe has fell, so
now I have two golf balls growing on my thyroid, which is the long term side
effect of interferon. 20 years out, I shifted a PhD project from material
science to collective intelligence, so the question to you, and it's based on
the observations on listening to all of the talks, it's not a criticism, just
an observation- we have a lot of high-powered, ... someone.. talking to us,
would you agree that there's some way we could use, knowledge gardening, as a
means to federate .. to .. or ever will speak, which then brings in
crowdsourcing a variety of other tools, which has not traditionally been
available to sciences? I can talk about knowledge gardening at length.. the
software is open source, and it's available to anyone who wants to begin
federating their research programs, there's a lot of synergy available. I'll
take my answer off here. Anti-vaccination crank?
Within our network, there's a lot of dialog, and there are organizations like
Faster Cures, that try to connect organizations like ours, and we're talking
abuot mutual contacts, so there are better ways to share ideas, one fo them..
that we do as an organization, is we try to reach out with many organizations,
but one aspect to keep in mind, haing been in the startup world, as a small
organization you can get really distracted by doing lots of other things, in
terms of trying to netwrok, it's a fine line in trying to do that. So that's
my comment on that.
Open source and sharing of data is very important, like Scott spoke about the
system of science broken, we also have a problem and.. open source
information, and how do we .. but also for the institutes. ... yes, but, I
know that, just a small number of researchers, ...
I really loved this session. We heard about how new research models could
reshape and accelerate medical research. Do you have some favorites that-
favorite medical tech that is emerging- other than sequencing that you think
will help you in your quest, the one thing that I have heard about is the guy
from University of Utah, from concepts to human trials in 5 years in $3M on
siRNA, and the one patient that they tested it on it was safe. Are there any
tech like that that you have been looking?
We're all talking abuot.. in the beginning.. sequencing levels. I think the
next few things is to really look at the proteomics because that technology is
really coming to a time when, analysis, it's going to be very useful. The
problem I see is that all of the information we gather, how are we going to
distill it into what valuable part of that information is? How do we figure
that out? It's actually, I've heard, cheaper to re-sequence something again
than actually store that information.
Can you say some moer about the value of the proteom? Is that in finding new
markers, diagnostics. Both. You might have a gene that you are sequencing but
you don't know the active state of that gene- a protein-. There might be
another, another genetic.. so it just brings up another level of additional
information, looking more at the protein levels.
Question for Craig. I'd like to hear more about the IP issues that yuo have
run into. Would there be some that you would have to included in it, but
someone walked out, like BRCA genes? Since you have done some of the leg work
on these diseases, why wouldn't 23andme use those markers?
Yeah, the IP issues and diagnostic world and there are eccentrics at everyone
of those. We are positioning are tests up the food chain, diagnostic tests but
more as a screening test. It's pre-conception testing. And that may or may not
make a difference on certain of those individual diseases, we certainly know
we're going to have some work to do, and starting to do some work with
business relationships and licensing, in some respects we can actually be a
plus to the diagnostic holders because thsi will actually, reflex testing for,
just being aware ofs ome of these conditions for pregnancies who have resulted
more testing being run, so we're certainly trying to be position ourselves..
there probably will be tests that we can't include for that reason, hopefully
others we'll have to work out for this, which is necessary, so it's going to
be on a case-by-case adventure as we go.
For the ones where there are not IP issues, what about having 23andme include
those in their panel? Which may or may nto be good.
I can't speak for them, but as far as we're concerned, ultimately we know
there's going to be other people in this space, and that's fine from our
perspective, the more testing and more disease prevention, then we win. That
will happen, we expect to be the first with this comprehensive offering the
first 450 diseases will be thef irst product and it will grow and expand, and
as costs decrease we will expect to add as much as possible to have the msot
comprehensive picture. The more people jump in, the water is fine, jump in.
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