Burrill Personalized Medicine 8: Patient-Centric Medicine

Fourth Burrill Personalized Medicine Meeting
November 10-11, 2008

Like last year, I am blogging my notes from the 2008 Burrill Personalized Medicine Meeting.

My notes begin with Part 1 here.

Note: my notes summarize comments, occasionally quoting directly. Any misstatements, misinterpretations, or outright misquotations are exclusively my bad.

Part 8: Patient-Centric Medicine: PM from the Patient's Point of View

Panelists:

• Mari Baker, President & CEO, Navigenics
• Michael F. Christman, PhD, President & CEO, Coriell Institute for Medical Research
• Steven A. R. Murphy, MD, President, Helix Health & The Gene Sherpa

Moderator: Caroline A. Kovac, PhD, Managing Director, Burrill & Company

Mari Baker, President & CEO, Navigenics

Kovac: How many people have taken you up on this $2,500 service in the 6 months it's been on the market.
Baker: Interest has exceeded our expectations.

Only take SNPs where there is a 20% increase in risk, or high lifetime burden. Cover 25 conditions now, will grow fairly quickly.

License Mayo Clinic data.

98% of patients showed at least one condition with >1.2x increase in average lifetime risk. 45% showed one condition with >3x.

What patients could benefit from:

• lifestyle change 50%
• personalized screening 80%
• aiding differential diagnosis 95%

Michael F. Christman, PhD, President & CEO, Coriell Institute for Medical Research

Coriell Institute: 50-year-old nonprofit biobank. Started "Coriell Personalized Information Collaborative"

• Collect saliva
• Evidence-based research study to see what genetic information is useful in the clinic.

We expect to have 10,000 people enrolled by the end of next year.

Coriell doesn't charge patients. That's the right model at present. People don't understand the difference between a 2x odds ratio and something like cystic fibrosis. It's just, "I have the gene for x."

If somebody has a very high body mass index, we'll tell them what that does to their diabetes risk, and show them the genetic factors, and they'll see that the contribution from genetics is typically very small. We want to be completely transparent an not overhype this. We use an outside board called an "informed covert oversight board."


Steven A. R. Murphy, MD, President, Helix Health & The Gene Sherpa

Early advice I got: "Now, genomics is a small subset of pediatrics, but soon pediatrics will be a small part of genomics." That should happen now with PM. Today, PM is a small subset of genomics, but eventually genomics will be a small subset of PM.

What we have today is genetic exceptionalism and genetic reductionalism. For example, if you have the SNP for high CRP, you don't have the increased risk for heart attack and stroke associated with elevated CRP. So there's a lot of hype.

Helix health was started by me and some other geneticists, taking genetic tests and using them to care for patients. Been in existence for about a year, applying the paradigm of PM, trying to get the right dose, the right treatment, the right diagnosis.

PM is going to be a lot about "pre" disease: pre-diabetes, pre-CVD, etc.


Questions

Q: DTC PM information. There are three models represented on the panel. This is a very controversial topic, and journals have published editorials that we should not be providing this information DTC, and a doctor should always be involved.

Murphy: BRCA1 was discovered 14 years ago. In 1995, Fourteen years later, there's a shortage of appropriate BRCA1 testing. Some of that delay was prudent, but we shouldn't let the perfect be the enemy of the good.

Q: Should genetic information always be delivered through a physician?
Christman: yes. And genetic information is of very limited value right now. It's not worth paying for. But, we need to think about how to integrate this information into the healthcare system.

Q: (In many states) to get your potassium level, you have to go through a physician. If I can't get a K test without a Dr., how come I can get a genetic panel?
Murphy: Actually, people end up in ER from taking too much K from a K test. So that's actually a good thing.

Q: Irrespective of testing, I advocate healthy diet and exercise. Even an informed guy like David Duncan didn't know. He went to a personal trainer and lost 15 pounds.

Kovac: We only want to sell genomic information in the context of a wellness or fitness solution.

Christman: There is evidence, not all of it anecdotal, that genetic information does change behavior. Women who see their BRCA1 status have a high propensity to quit smoking, even though there's no relationship between BRCA1 and smoking.

Murphy: This is what the insurance companies are afraid of: people will demand an expensive colon imaging study because they have a risk factor for colon cancer, and their Dr. will agree. The socially responsible delivery method is to pair genetic information with some healthcare provider.

Q: How do we educate people on how to address risk that they will be denied coverage due to a "pre-existing" genetic condition. Is GINA enough?

Murphy: Open physicians eyes to genetic diagnoses. The second part is, reducing fear from GINA. The government is going to have to do that one.

Christman: This information will get out there. If they can steal my credit card info, they'll get my genome, so we have to legislate what people can do with that information. GINA doesn't cover life insurance, but I think the life insurance issue is not a huge one. Market forces will contain the problem.

Baker: It would be interesting to have somebody from the life insurance industry up here.

Next session: 9: Changing Business Models in Personalized Medicine