Personalize Medicine World Conference Summary

[Guest guest]

Hi Everyone,

The past two days I attended the Personalized Medicine World Conference (

PMWC2011.com ).

I thought some of you might be interested in what I learned as much of it may be

applicable to us. Sorry if this is a long email, but there was a lot to learn

at the conference and I hope you take the time to read it.

First we learned about P4 medicine: Predictive, Preventive, Personalized, and

Participatory

(http://www.systemsbiology.org/intro_to_isb_and_systems_biology/Predictive_Preve\

ntive_Personalized_and_Participatory)

This is important to us in a couple of ways. First, predictive. If we could

all participate in a Genome Wide Association Study (GWAS), that may help

scientists determine which version of genes (SNPs) are associated with people

who have sexual dysfunction or not. I got in touch with scientists at 23andMe,

a direct to consumer company and have been emailing back and forth with them.

They may be able to create a survey on their site to see if there is a genetic

difference in those who have taken an antidepressant and had a good response and

those who have developed side effects. Perhaps in the future this could prevent

others from taking these drugs if they are only going to hurt them. It may also

help us identify genes involved in poor response/side effects and may help lead

to a cure. I encourage all of you to sign up to be genotyped and contact

scientists, such as those at 23andMe or any other research doing research to try

to see if we could get this started. Another option would be the Coriell

Personal Medicine Collaborative (http://cpmc.coriell.org/).

Next, Personalized. In the future, by looking at our genomes/genotype perhaps

doctors will be able to tell patients which drug is best for them so that those

who will have side effects won't take them.

Participatory: One of the key things that I got from this conference is

PATIENTS MUST PARTICIPATE. If you want researchers to find a cure for this

disorder, you need to be proactive and contact researchers. There were several

cancer survivors who spoke at that conference who not only survived their

disease because they were proactive in contacting doctors and researchers and

read research, but some of them also lead to new cures or digital technologies

which I will mention later. We can do the same but we need to be less afraid

and just contact research groups as I did with 23andMe. In fact, if others

contact them and mention how they would like to see a survey concerning SSRI

response/side effects on 23andWE (their research branch) it will probably be

more likely to happen that if just one grad student contacts them about it.

(https://www.23andme.com/ ).

Now in terms of useful resources. There was a lot of talk about how patients

and doctors will someday be more connected and more able to exchange ideas

basically through social networks. A few prototypes of these things that exist

today and were presented at the conference were Microsoft HealthVault (medical

records, and information sharing with doctors) and Patient Power,

http://www.patientpower.info/ which allows patients to connect with both doctors

and drug companies. I know we have a tendency to think of all drug companies as

evil on here, but quite frankly that is not completely true. This latter group

is a nonprofit started by a cancer survivor. Basically the idea is to create a

stronger community. I think this really applies in our case, as many doctors

haven't heard of PSSD because its relatively rare. If we all connected in a

forum visible to them perhaps that could help effect some change.

One of the biggest things I took away is that pharma companies actually want to

create intelligent diagnostics so cases like ours don't happen. They are not

just evil, and many people working there want to help people. We are bad for

business after all as we write about how bad the drugs were for us. It also

makes it harder for them to get FDA approval. If there was an intelligent

pharmacogenomic diagnostic that could tell our doctors, you will have PSSD, and

you will not; if SSRIs are a bad idea for some and helpful for others this

would be a great advancement. This is not an impossibility.

Now, how about new medical developments. What I took away in this area is things

are progressing very fast. With the genomics and proteomics revolutions and

more intelligent medical care there may be treatments for things like PSSD in

the future, so its a reason to keep hopeful. Medicine as we know it today will

look primitive in a decade.

One company I spoke to that I found interesting was SureGene. They are doing

essentially what I think needs to be done for SSRIs, that is creating a

pharmocogenomic diagnostic. In this case they are working on one for

schizophrenia and bioplar disorders to determine which drugs to give to

different patients (SureGene is doing this along with Medco, a large pharmacy).

Like SSRIs the drugs for these disorders can have some nasty side effects, but

by testing patients before prescribing drugs many of these can be prevented.

You can check out their website at http://www.suregene.net/ . It might be worth

wile to CONTACT them and mention that you like what they are doing and would

like it if there were a test for antidepressants. These types of tests in the

future will help prevent horrible side effects and make medicine more effective.

I hope you all found this helpful. I can try to answer questions as best I can

but as a first year graduate student I still have a lot to learn. PLEASE take

away the message that WE CAN MAKE A DIFFERENCE, but we need to be proactive. I

was very impressed with what several of these patient advocates were able to

accomplish. Don't feel like just because you are not a scientist you cannot

participate in medicine and changing the medical system.

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