23andMe – Page 2 – The Health Care Blog

How Useful Is Personal Genomics? A Case Study

Jul 16, 2012

By Seth Roberts

How much can you help yourself by getting your genome sequenced?

A lot, a little, not at all?

Scenario 1 (big help): You discover you have a greatly elevated risk of Disease X. You do various things to reduce that risk that actually reduce it.

Scenario 2: (a little help): You discover you have a greatly elevated risk of Rare Disease X. You do various things to reduce that risk but they don’t help. At least, when Disease X starts, you will be less upset.

Scenario 3 (no help): You discover that you have a greatly elevated risk for a common easily-noticed disease (such as obesity). You already watched your weight, this changes nothing. Scenario 4 (harm): You discover that you have a greatly elevated risk of Scary Disease X (e.g., bipolar disorder). It is depressing news. Later studies show that the gene/disease association was a mistake. (Many gene/disease associations have failed to replicate.)

A recent Wired article tries to answer this question for one person: Raymond McCauley, a bioinformatics scientist who had his genome sequenced four years ago and learned he was “four or five times more likely than most people to develop age-related macular degeneration (AMD)”. The article says “of all the ailments described in the 23andme profile, AMD has one of the strongest genetic associations”. If I found this in my genetic profile, I would want to know the confidence interval of the increased risk. Is it a factor of 4.5 plus or minus 1? Or 4.5 plus or minus 8? This isn’t easy to figure out. In addition to the question of variability, there can easily be bias (= estimate is too high). Let’s say I do 100 gene/disease association studies.

Genetic Testing and Insurance: One Datum

Feb 3, 2012• 4

By DAVID FRIEDMAN

Reductions in the cost of genetic testing and improvements in what we know about what it tells us produce obvious benefits; if you know you are likely to have some particular medical problem, you may be able to take precautions against it. But they also have at least one potential downside.

The more is known about the chance of bad things happening to us, the less able we will be to insure against them.

A solution to this problem that is sometimes proposed is to permit individuals to have their genes tested but forbid insurance companies to require testing as a condition of insurance or to use the information it produces. The problem with that is adverse selection. If the customer knows his risk and the insurance company doesn’t, high risk and low risk customers are charged the same price, making insurance a good deal for the former and a bad deal for the latter. Insurance companies, realizing that most of those who choose to buy their insurance are bad risks, will charge accordingly, driving more of the low or average risk customers out of the market. In the limiting case, insurance is bought only by high risk customers, at a high risk price. A famous description of the problem is Akerlof’s article “The Market for Lemons.”

If we allow both insurance companies and their customers to make use of genetic information, then both high risk and low risk customers can buy insurance, but at different prices. The risk of having genetic variants that make you more likely to suffer some expensive medical problem is uninsurable, although you can still insure against the risk that, given those genes, the problem will actually appear.

Data to the User!

Sep 6, 2011• 2

By ESTHER DYSON

NEW YORK – Customer data is a concept that most companies, especially those involved with health and health care, see as a threat rather than an opportunity. Most companies associate consumer data with “privacy,” seeing only expensive disclosure requirements, constraints on their ability to collect information about their customers, and a potential source of legal trouble.

So they consult lawyers and IT risk specialists to consider their options. To protect against being sued, they write lengthy disclosure statements that cover every possible use of consumers’ data. They then hand these statements to their marketing departments, who hide them behind little windows in small type.

In general, these companies see consumer data as something that they can use to target ads or offers, or perhaps that they can sell to third parties, but not as something that consumers themselves might want. In fact, many so-called privacy advocates have the same constricted vision. Most pundits on either side don’t consider that that rather than hiding from consumers or protecting them, companies should be bringing them into the game.

Over time, I’m convinced, successful companies will turn personal data into an asset by giving it back to their customers in an enhanced form – analyzed and visualized into something of value to the individuals themselves. I am not sure exactly how this will happen, but current players will either join this revolution or lose out.

Let’s start with the disclosure statement. Most disclosure statements are not designed to be read; they are designed to be consented to. But some companies actually want their customers to read and understand the statements. They don’t want customers who might sue, and, just in case, they want to be able to prove that the customers did understand the risks. A regretful customer is a vengeful one. (The very best companies want this because they like their customers to understand what they’re getting.)

So the leaders in disclosure statements right now tend to be financial and health-care companies – as well as my favorites, space-travel and extreme-sports vendors. Right now, some clinical trial operators and the “extreme” companies are doing the best job – perhaps in part because some of their customers actually appreciate the element of riskContinue reading…