I'd to welcome you to tonight's event and uh I'd like to thank you for uh for attending.

Uh my name is Brandon Allgood, I'm a UC Santa Cruz trustee and one of the co-organizers

of this evenings event. Um before we begin, I wanted to say uh say some things

uh real quickly to the UCSC staff that have done a lot of work to put this event together

As well as QB3 for co-sponsoring it and uh allowing us to use their space here.

Um tonight's, oh before I begin, uh another, I also wanna acknowledge two groups that have that have

co-sponsored tonight's event, the UCSC Entrepreneurship and Business Group

and the San Francisco, Bay Area Slug Attorney Network. So...

[Laughter and applause]

Uh welcome to those groups and thank you for your sponsorship.

Um tonight's subject is one that uh I've personally been been thinking about a lot

um over the last couple of um over the last couple of years uh there's

been you know, we're really on the on the verge of the age of personal genomics

and through the advancement of science, uh you know, we will see in the next

5 to 10 years uh new treatments for diseases and uh new, possibly and hopefully, cures for disesases.

Diseases that plagued plagued humanity um but you know, I feel that through that there's

an advancement of science but there also has to be an advancement of of

public discussion, about not only the power of genomics but you know

how how we deal with genomics as a society

Um and I'm excited for the panel this evening and hopefully panels like

this are are are will help advance the discussion uh in the public

and so that so that you know, in a number in a number of years when

geno... when you can get your genome sequenced for you know, I dont know, David will probably

give the dollar, the dollar amount

when he comes up

but uh you know when you go to the doctor and you get your genome

sequenced uh just as a matter of fact that that we also have we also have uh we also have

things in place uh laws and and and what not to protect patients and to help

also to help science move forward. So...

uh its my pleasure, to introduce a man that uh I think needs very little

introduction uh, David Haussler. Doctor Haussler is going to be kicking off this evenings

event talking a little bit about some of the science behind personal genomics

Uh doctor Haussler is an investigator at the Howard Hughes medical center,

uh Medical institute and director at the center of Bio-medical Science and Engineering

and a distinguished professor of Bio-medical Science and Engineering at UC Santa Cruz.

So please join me in welcoming David Haussler.

[Applause]

Thanks so much

Terrific, thanks thanks so much.

and and and thanks to uh to Jenny for organizing this, this is a very exciting opportunity and we have

a a very important subject matter here. There could be no more exciting time

then now to be involved in science and especially science as it relates to medicine

and other things that are very deeply affecting our lives. The fact is that

3.8 billion years ago there wasn't DNA. Since then its been pasted on from parent to offspring

through all of these eons and its in your bodies right now.

[Laughter]

Scary? huh? The people, people had this thing about DNA like it has uh you know this special magical powers

or theres aww and so forth.

Its in your body and and making a lot of what you are. So what does it mean to be in the

era of personal genomes? Well it was just 12 years ago that we realized a dream, we the the human race

realized a dream that actually began with Bob Sinsheimer and others like him.

and I'm very pleased that Bob is here in the front row

[Applause]

To actually read that sequence of DNA

That message that was passed on for 3.8 billion years, the audacity of Bob's

first proposal to actually do that caught the scientific community by surprise and that turned into

the human genome project. And it, a particular source of pride for UCSC.

That the results of that project, the first sequence of A's C's T's and G's 3 billion of them,

From the first individual who was sequenced was posted on the internet on July 7th

from the University of California, Santa Cruz.

That is the first time that humanity got its glimps of this DNA message

that had been pasted on for so many eons

and its the first time we had a chance to really look at it and understand it.

We looked at this as a representative of all of humanity because we are 99.9% identical

to each other. It was essentially a universal map of humanity and our molecular

heiratige. It cost an excess of 100 million dollars to produce that first sequence.

as you see on this chart and that's just from chemical reactants and the machines and

so forth that were used. The project itself was almost 3 billion dollars.

This technology has been the most dramatically improved technology

of any I'm aware of. If you see the white line here. Thats Moores law improving

by a factor of 2 every 2 years. That took us from computers of the 50s to computers today.

The gold line is the improvement in DNA sequencing technology from

this time.

What cost 12 years ago, over 100 million dollars, next year will cost 1000 dollars.

Hundred, thousand times improved.

a project with the Long Now Foundation

with a mission to provide deep ecological enrichment through extinct species revival

Yes, pretty interesting stuff will have to have another panel on that

ah (laughs)

She currently serves on the Board of Directors of the Personal Genome Project,

which aims to sequence and make public,

the complete genomes and medical records of a hundred thousand volunteers

in order to enable research into personalized medicine

A proud graduate of UC Berkeley

Please welcome Ryan Phelan

(applause)

Um

And ah

sorry I didn't have the right order

Ok and

Gail Jarvik,

sitting next to Ryan and me

Gail is the Head of the Division of Medical Genitics and the Motulsky Chair

Professor in Medicine

and Professor of Genome Sciences at the University of Washington Medical Center up north

In case you were wondering where it was

Doctor (laughs)

Doctor Jarvik

I'm I'm from Kansas City, you know, you think of these things

Um

Doctor Jarvik specializes in the mathematical genetics of complexity

um

complexity inherited, sorry

complexity inherited human diseases, such as Cardiovascular Disease, Dementia, and intellectual function

and Cancer

She is actively investigating the implementation of genomics in clinical care

So this meeting of genomics with medicine which is all critical at this moment

Both through her leadership in the Emerge Project,

which is a nationally founded project to figure out how we should,

when we should link electronic medical records to genomic data

Um as well as in the National Clinical Sequencing Exploratory Research Consortium,

which applies high three-put sequencing to clinical care

Thank you for being with us here tonight, Gail

And please welcome Gail Jarvik

(applause)

Ok, so, um as the panel knows, but I just want to fill in the audience

What we are going to do is, I am going to pose, um, ah, a question

Ah each, to each of the panelist

and they're going to have the chance to respond to that

so the rest of the panelist will chime in with any responses that you all might have to that question

Um so there is one question specifically written for each of the panel members to bring different expertise to the table

Um and then I'll have one question at the end that is posed to all of them

and then it will open up to you all to have a chance ask questions

Ok

So that's the basic format

Ok, so, um, I, my first question is to you, Gail

Ah, turn around here, can't see you well

Um, so

Ah, so as David has mentioned, um, and as I just recalled

We've seen huge progress in sequencing genomes in the last five years

and so now it's a reality that the genomic data is potentially there

for, to be used in medicine

And this is a huge, scientific and technical feat that we've managed to do that

And to do it as cheaply as we can

So, what I want to ask you is where we're at in the next big challenge,

which is how do we make this sequence meaningful for medical care?

What at the moment is the medical value of, which you say, of genomic information

and how should the medical system respond

to that, um, that value in this moment?

Should patients have access to their genomes, and if so in, in what form?

So what, basically, what is the value of this information right now?

And then the converse part of that is,

as we find, well I am going to let you answer that and then I'll ask you the second one

(Panel Member) (laughs) That's a good place to start

What is the value right now of the genomic information?

(Gail) So, really, in a current utility because it is a fast moving target

So I've been a clinical geneticist for over 20 years and much has changed

in that time

And right now, we're just to the point where we are using whole genomes in the clinic

And at University of Washington we're very lucky to have, ah, very good genomics

and we are a center for clinical sequencing

We have one of six national grants to apply that sequencing into clinical care

So we're actually doing a randomized control trial of patients with Colon Cancer,

where half of them would get usual care and half of them where doing what we call,

exome sequencing,

so sequencing all the coding regions of the genome

But that's a partnership model

And we have both things going on in the real world

and the fact is there are really compelling arguments from both ends of that spectrum

But you can't play both games at the same time and have to make choices

So, I think this is a scenario where we don't have the right answers.

Maybe we will if we discover some of these things make mistakes or bad things happen

But we don't know where that's going to happen right now.

First of all, I think what you're doing is from a clinical perspective. Right.

I actually found my APE4 status from a cardio panel.

Because they didn't think about the Alzheimer's aspects of it when they returned it.

So, I got the Berkeley workout and they told me I had a APE4 variant with no genetic counseling.

When I found the same thing out through my 23 and me, I had to go through a complex set of pages

before they allowed me to see it because

I mean, if I only had one copy but it increases my odds of Alzheimer's from 7% to 14%.

And so making sure you don't do that accidentally is actually important.

I fall on the general other side of it as poeple who are sick or have family members who are sick

can access these technologies outside of the institution.

They are going to.

So, there is a massive over investment in the cordunomics facilities.

So now you can buy these services. There's actually online market places that let you get PCR and sequencing

from condunomic facilities that competetive bids as an outsider with no credentials.

So groups of people will come together and sequence themselves if the system isn't doing research on them.

Though, they will get these files and hand them to researchers and mathematicians.

And a lot of bad decisions are going to get made as a result of that.

But if you are not a part of the existing clinical research system anyway

this is a ray of hope.

It may be a false one; but, just 2,500 foundations do at least 100,000 dollars in research in the U.S. privately.

I'm starting to think that giving it to academics is not the best way to spend it.

Right, so

Pulling people, generating data, and getting that data to mathematicians is becoming a credible alternative

Who explains it to the subject?

Nobody does, they come together and commission it themselves. It's outside the entire system.

But is it reasonable to say that I'm going to pay 5,000 dollars

And, I'm going to get a genome back to me

And I'm not a geneticist. I may be a college professor in economics and I'm certainly probably not a Fireman

but someone has to put it in context.

"Is it reasonable?" is a different question that "Is it happening"

Oh sure, It's happening!

But, if you think about the broader context from my stand point as a clinician.

We have people coming to clinic to have their Direct-to-Consumer genetic test explained to them

because they are not adequately explained.

And we have a flood of completely healthy people who are now medicalized by a choice they made.

And a choice that they had the right to make.

But then, you know, Is it the insurance system's burden to pay for those visits?

You know, there is a lot of downstream costs of that.

So, I'm not against that point. I think that you should talk about the pluses and minuses.