The online health revolution and your DNA: It’s a trust issue

23andMe, a Web-based service that allows you to understand your DNA, officially launched Monday and for $999 you can order a saliva kit, send your genes to the company and then get a hosted account with all of your genetic information for analysis.

23andMe said in a statement it is offering its services in the U.S. and will allow customers to analyze their genome and compare it to relatives who participate. “We believe this information provides intriguing insights into an individual’s genetics, with the goal of expanding the collective knowledge base by enabling active participation in research,” said Anne Wojcicki, co-founder of 23andMe. There’s a Webcast at 2 p.m. EST today.

The company, which actually launched over the weekend, is garnering a good bit of attention because Wojcicki is Sergey Brin’s wife. Google is also an investor in 23andMe. Those facts may get 23andMe some initial press, but the service will carry the day. And I do think 23andMe is onto something big here. Sure, uploading your genetic information to a startup’s Web site may creep some people out, but I must admit I’m a lot more curious than I thought I’d be about 23andMe’s service.

Here’s the process:

• 23andMe sends individuals a saliva kit containing a barcoded tube for saliva collection. Customers then use the enclosed mailing materials to send their samples to 23andMe’s contracted laboratory. The DNA is then extracted and exposed to a microchip-like device made by Illumina, a leading developer of genetic analysis tools, that reads more than half a million points in the individual’s genome, including a proprietary set chosen by 23andMe scientists, to produce a detailed genetic profile.
• Once the analysis has been completed, individuals will be able to use their own private login to access their data via 23andMe’s secure website. Using 23andMe’s tools, individuals can explore their ancestry, see what genetics research means for them and compare themselves to friends and family members.
• Ultimately, they will become part of a community that works together to advance the overall understanding of the human genome.

At this juncture, I don’t have the $999 lying around just to figure out my gene pool. I’m also not convinced I want to know that much about my DNA. I already know I’m predisposed to be chunky if I don’t workout like a madman. There are some cholesterol issues in my family. And I have the gene that means I run slower than molasses running uphill on a cold day. What else is there to know?

 

Aside from the price and curiosity issue there’s another hurdle that really is the linchpin of 23andMe’s business and the entire online health information revolution: Trust.

Can you trust the company holding your gene pool, medical records and other critical data?

Consider the following: 23andMe gets my DNA. I’m uploaded to a secure server that’s private. I’m the only one with access to my data and I discover all sorts of information about my ancestry, tendencies and some insight to cancer rates in my family. That’s worth $999 easy. And then 23andMe becomes such a hit that United Healthcare buys the company. I trusted 23andMe the startup. I don’t trust 23andMe, the unit of a health insurance company.

If you think that putting your corporate data in the cloud comes down to trust just imagine the mental hurdles involved with putting your gene pool in someone else’s data center. For me, this data security issue is arguably the biggest hurdle for online health records of any sort. Yes, I realize paper is inefficient, but somehow it’s comforting.

Microsoft HealthVault launched in October with an impressive lineup of partners. Technically, HealthVault isn’t a personal health record, but a way to straddle numerous health records and combine them in one place. Microsoft understands the trust issue and spends a good amount of time talking about privacy. Here’s the privacy statement. From an FAQ:

Q: What is Microsoft’s approach to privacy for the HealthVault platform?

A: People willing to try Microsoft’s HealthVault must trust that their data will not be lost or misused by us or anyone else. Microsoft designed and built HealthVault with a strong foundation of security and privacy while consulting with experts inside and outside the company to augment our significant expertise in these areas. HealthVault’s privacy principles show that we’re committed to putting people in control of their health information:

1. The Microsoft HealthVault record you create is controlled by you.
2. You decide what information goes into your HealthVault record.
3. You decide who can see and use your information on a case-by-case basis.
4. We do not use your health information for commercial purposes unless we ask and you clearly tell us we may.

Q: How can you promise consumers that their data will be safe? What measures have been taken to protect data “in the cloud?”

A: HealthVault was developed using Microsoft’s Security Development Lifecycle, which means security concerns have been factored into every stage of the development process and our work has been subjected to internal and external security testing. HealthVault grants access to partner programs only to the extent a user allows such access. A partner program cannot access a user’s HealthVault record without the permission of a record custodian.

Microsoft’s systems operate with extra precautions. With HealthVault we isolated traffic onto a virtually separate network and located our servers in physically separate, locked cages. All data that moves among our systems is encrypted, including all traffic to and from HealthVault, its users and its partners. Access to HealthVault data by Microsoft employees is tightly controlled and extremely limited to a small group of personnel necessary to perform essential operations.

All of our back up data is encrypted, and every stage of its transportation is logged. We also log every time records are created, changed or read, leaving a clear audit trail.

Is that enough to win me over? Probably not yet. And I generally trust Microsoft with my data.

Will Google Health be any different when it lands? I doubt it. I’m well aware that Google scans my Gmail for advertising purposes and nothing bad has happened. I’m also aware that Google claims to do no evil. I trust Google too. But do I want my health data stored on Google? Probably not.

It’s a mental hurdle I have–and it’s one a lot of other people have. Maybe if HIPAA applied somehow I’d feel better. Today there is a trust issue I assume I’ll get over. After all, much of your financial history can be swiped in a crafty phishing attack but it’s not like you put your money in the mattress.

But medical information is different. As 23andMe tagline proclaims: Genetics just got personal. That’s part of the problem. When you store your medical history, DNA and tendencies for heart disease in someone’s cloud trust is everything.

Other 23andMe items worth a read:

• Wired: 23AndMe Will Decode Your DNA for $1,000. Welcome to the Age of Genomics.
• New York Times: My Genome, Myself: Seeking Clues in DNA.
• Dana Blankenhorn’s health IT blog.

Life in the gadgets graveyard

The country’s stockpile of “last year’s gadgets” is growing every day. And despite new EU laws on recycling, it’s still no easier to make devices last.

Imagine throwing away an expensive colour printer and high quality scanner even though they are both in perfect working order. Madness? Not when the items in question happen to be more than a couple of years old. Electronic gadgets are piling up in spare rooms and landfill sites because today’s state of the art is tomorrow’s unwanted junk.

For the same price as new ink cartridges for an old colour printer, you can buy a new colour printer that’s twice as fast and twice the quality.

Landfills are filling

And although that scanner works, it can’t be connected to a computer bought less than a couple of years ago because of changes to connection standards.

Even if it did, the scanner wouldn’t work with Windows XP, the software than powers most home computers bought today, because, well, even though the scanner works, the software decrees that it’s obsolete.

Working order

The truth is, even when they are in fully working order you can’t give away an ageing scanner or colour printer to a local primary school or nursery. I know this because I’ve tried.

It’s not just computer hardware that’s unwanted even when it’s in perfect working order. Walk down any high street and you’ll see displays of last year’s handsets in mobile phones shop windows with signs which read along the lines of: “If your mobile looks like one of these then you need to come in and see us!”

The message is clear: your mobile phone may be a perfectly functioning wonder of electronics – but if it doesn’t take pictures or have the very latest advanced features, it’s as embarrassing as a long forgotten Dollar album.

Breakdown

If working electronics are discarded when they lose the cutting edge, what chance do broken ones have?

Five years ago it was worth repairing a television set, hi-fi unit or even a video recorder. Unless something was very wrong indeed it was almost always cheaper to fix your existing one than to buy a new one.

“Hasn’t it got one of those moveable arm things?”

But now the economics aren’t so clear cut. You can still choose to repair your television when it goes on the blink, but secretly aren’t you just a little bit pleased that it’s not working?

A broken set gives you the perfect excuse to upgrade to a wide screen television, or perhaps a flat screen one you can hang on your wall, or a digital television with a built-in DVD player and Dolby 5.1 surround sound decoder.

Fix the CD player? You must be joking! It might just be the fuse, but a new CD player would play MP3 music files you’ve downloaded from the internet, and maybe video CDs and DVDs as well. There’s no point throwing good money after bad – better get a new one.

Disposable income

It turns out that it’s very common practice in Britain to replace domestic gadgets like televisions, video recorders and hi-fi systems, as well as mobile phones, long before they are broken – especially among the 18-24 year old age group, which typically has a high disposable income and the willingness to spend the money on consumer gadgetry.

The old gadgets, functioning but unwanted, are simply relegated to spares to be stuffed in the back of cupboard and hoarded – or dumped.

There are hundreds of millions of pounds worth of phones lying around

Colin Thompson

A survey carried out by London-based communications company Telewest found that more than half of all households in the UK have more than three electronic gadgets that are no longer wanted, and almost a third of men have four or more.

Colin Thompson, a spokesman for Falkirk-based mobile phone recycling company Eurosource, says as many as 80 million abandoned mobile phone handsets are languishing at the backs of drawers in homes throughout Britain.

Repaired

“Each phone that works is actually probably worth between £2 and £10 (to a recycler), so there are hundreds of millions of pounds worth of phones lying around.

“These could be sorted and repaired before being sold on to brokers who ship them to countries such as China or South Africa which have poor land-line telephone infrastructures, or stripped of useable parts and plastic,” he says.

The total value of all the abandoned electronics is far higher, according to the Telewest survey. It found that more than £5 billion of working televisions, video players, hi-fi equipment and other gadgets are lying around unused and gathering dust.

But to benefit from this £5 billion, the owners of the abandoned equipment need to get it out of their houses and over to a recycler.

Yet despite the vast sums of money involved in total, the survey also found that when it comes to recycling, almost half of 18 – 24 year olds simply can’t be bothered.

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The UK’s National Computer Day is on Friday 4, October. See BBC News Online on the day for more ideas of what to do with old machines. Meanwhile, if you have bright ideas for dealing with defunct devices, let us know, using the form below.

Your comments so far:

If you move away from the obsession with 18-24 year olds, you’ll find two sets of people. One is elderly people (many of whom have plenty of cash now that the kids have left home) who get straight into the latest gear from a base of nothing at all, and who therefore have nothing to throw away. Then there are the fortysomethings like me who have kids and other expenses, and who have finally woken up to the fact that much of the drive to upgrade is a marketing ploy by manufacturers who need to shift goods which, let’s face it, never go wrong. So to keep in business they must create a myth of obsolescence. I am an author and I have written four books on either one of my 2 computers, both of which run Windows 95, and which will continue to work perfectly well as stand-alone units until they fall to pieces. Any reason I have for upgrading them will be to become compatible with broadband… one day.
Henry, UK

I can’t even get a simple switch changed on our 18-month-old washing machine for less than the price of buying a new machine.
Ian, UK

Old computer hardware is already appearing in showrooms placed on reproduction antique furniture!
Alun, Netherlands

Many charities will gratefully take old computer equiptment if you ring round, either to pass on or use themselves.
Beki, UK

Reuse the casings of old tv sets for aquariums.
Vikas, UK

OK, so I’m a geek, but I tend to keep a lot of the old kit because you never know when it will come in handy – and the only reason people need bigger and better computers is because the software requires it. I’ve got old Pentiums which act as servers for websites, and even an old BBC Micro is a great training tool for assembler (machine language) programming. And my old mobile phone came in really handy when my new one broke, and I was waiting for a replacement!
Joel Rowbottom, UK

This is an issue which annoys me. When I once tried to get a television fixed the repair man virtually refused saying it wasn’t worth it. The problem is that the cost to the environment of dumping these items is not taken into account.
Darren Riley, UK

At my previous company, we sold 15-year-old software that ran on MS-DOS and Amiga to India. When we first received an order for this software (which we had assumed was completely obsolete), we were curious to discover why anyone would pay for this. Investigation uncovered the fact that in rural India there is a demand for old, but functional, PC’s from Europe and America as they are affordable. Surely, this has to be an ideal solution. Perhaps charities should put a ‘machine bank’ next to the Clothes Bank. Better than the contraptions filling up yet another landfill!
Alan Dean, England

I keep hearing that schools will not accept donated old kit. I’m a school network manager and I do. Even if I can’t actually use it, I can usually find stuff on it I can canabalise for repair work. The truth is very few people actually ever offer to donate stuff to us. I admit I refuse items of below pentium level – as my system will not cope with sub-pentium. But it’s not often I turn stuff down
Andy Smart

I would not have to renew my scanner and printer every other year if manufacturers were required to keep their driver software up to date for 5 years and to maintain stocks of toner etc at a reasonable price.
Martin, United Kingdom

Cutting edge gadgets honoured

Where have all the keys gone?

A keyboard without any keys, a solar charger for the Gameboy and a digital electric guitar are among the most innovative gadgets on display at the world’s largest consumer technology trade show. They have all been recognised at the Consumer Electronics Show in Las Vegas as trend-settings products.

Every year a panel of journalists, designers and engineers look at hundreds of cutting edge products.

A handful win prestigious Innovations Awards and are highlighted at the exhibition as reflecting the best designed and engineered products.

Look, no keys

The awards recognise the best designed and engineered products in a range of categories, from accessibility and audio, to video and wireless.

Solar-powered GameBoy

A computer keyboard without any keys came top in the accessibility stakes.

The orbiTouch Keyless Keyboard uses the hand and arm to type, not fingers.

Instead of keys, it uses a pair of sculpted domes to ‘type’ characters by moving the domes.

The company behind the product, Keybowl, says its keyboard will help prevent repetitive stress injuries that can be caused by a conventional keyboard.

The award “represents further recognition of the unique solution for computer and information access provided by the orbiTouch Keyless Keyboard,” said Keybowl President, Dr Peter McAlindon.

Solar panels

Elsewhere, other equally strange-looking devices were on display, like the Solar Pak for Nintendo’s Gameboy Advance.

Each string picked up individually

The gadget by US company Gemini Industries encloses the Gameboy in a futuristic looking case.

On the outside are solar panels so keen gamers need never have to worry about batteries dying just as they reach the last stage of a game.

Among the other gadgets considered to be the best of the best are a handheld computer with satellite navigation, a wireless internet stereo and a talking smoke detector for young children and the elderly.

Sounds electric

But perhaps the one honoured product that will have purists up in arms is a digital electric instrument by the venerable guitar maker Gibson.

It has developed what it says is the world’s first digital guitar. On the outside it looks much like Gibson’s legendary Les Paul Model.

The difference is that it uses digital technology called MaGIC, so that the sound from each string can be picked up individually.

“MaGIC will revolutionise the way media information is transmitted in content creation, post production and editing, and in the consumer home,” said Gibson CEO Henry Juskiewicz. “It’s the right technolgy at the right time.”

The gadgets will be on show at CES which runs from 9 to 12 January.

More than 2,000 companies are showing off their wares and more than 100,000 visitors from 100 countries are expected to attend.