The FDA Shuts Down Home Genetic Testing Company 23andMe

On Monday the US Government FDA forced the main home testing company 23andMe to stop selling its saliva genetics home testing kit. As this is their only product this means that they effectively shut down their operation.

Looking at Genes

Looking at Genes

The problem seems to be that the company is offering testing for gene mutations that may lead to rises in probability of contracting diseases. This is considered a medical test by the FDA, and so they require trials and results in order to see how well the tests work before they license them. 23AndMe have been unable or unwilling to provide such results, so cannot market their device unless they take away all of the medical arguments.

This is the technical reason, but there are serious ethical issues surrounding home genetic testing. The following are just a few of my own ideas:

Without serious research doubt must remain about the quality of the results. The samples are not second tested, and the quality of testing cannot be of the same level as other medical hight cost exams. There have been problems reported due to the small number of people involved in the test groups, as statistics require masses of data that are not yet available.

Are customers qualified to interpret the results? What does a statistical rise in probability actually mean to a person that has never studied statistics or probability? And the results are delivered without any counseling, so if there is bad news the customer is left to process the information alone.

Here just a few examples might demonstrate the difficulty. If I have a 1% chance of contracting problem A, but I have a gene variant that means that I am 70% more likely to contract it, I might be distraught. The reality is that I now have a 1.7% chance, very little difference, but I might try to change my lifestyle, treat my kids differently, get paranoid, have preemptive surgery, who knows how an individual will react without medical advice?

If on the other hand I am negative for a mutation for something I might adopt an equally problematic stance. I don’t have the gene mutation that leads to skin cancer so I can stop worrying and have another hour on the sun bed. Social factors are really the big ones in many cases.

And what about testing your children? How will parents react knowing that their child might be susceptible to certain problems later in life?

Oh and if I discover that I have something hideous, should I tell my brothers? They might carry it and pass it on to their children. How personal is this type of medicine? It is familial, not individual.

The 23andMe problem is a prime example of money ruling. They have operated for 6 years, without regulation and blatantly challenging the FDA and medical profession that they see as holding up progress. As far as I can see this is about as far away from the responsible innovation that I have spent my recent life trying to promote as I would like to see anyone go. I would add though that it is a systemic problem here in the USA, not a personal divisive choice, and it is very different to the European approach underscored by the precautionary principal (with all its critics).

For further reading you will find several of my articles linked through this post on the same subject from last year.

The National Post has a good article too that includes both sides of the argument.

The Future of Personal Transport

I am a cyclist myself. I don’t have a car here in the USA, although I do have one sitting on the drive in Italy. The problem with cars is not only that they pollute but also getting stuck in traffic.

When I go out on my bike I know exactly how long it will take me to do my trip, presuming that I have done it before. So I can get to my music lessons in 25 minutes, or to the dentist in 20. If I take a car though sometimes it takes 10 minutes, but sometimes it takes half an hour or more, so I have to leave with ample time to adjust for these problems.

Oh and a million people a year are killed in cars, although biking is certainly no safer. What we need is an alternative, and today for you ladies and gentlemen (and third Gendered) I have started saving up for my answer and dream, a flying car.

The Terrafuggia flying car as a car

The Terrafuggia flying car as a car

No longer the stuff of dreams, local Massachusetts company Terrafuggia are now taking orders for their series of flying cars that will be launched in 2015.

A prototype exists already, and in this CNN video we can see the CEO driving it to the gas station, filling up and taking it for a fly. At a little over $275 000 it may not be in everybody’s price range, but could this seriously change the way we move around in the near future?

I think the USA is the perfect place for such a machine as there are plenty of open spaces for take off and landing, but I can’t see them selling many in Hong Kong or Singapore, or even my home city of Manchester to be honest.

The Terrafuggia flying car as an aircraft

The same Terrafuggia flying car as an aircraft

But returning to the craft itself the spec is interesting. As the website states “the Transition® is the transportation of the future today.  A street-legal airplane that converts between flying and driving modes in under a minute, the Transition® brings a new level of freedom, flexibility, and fun to personal aviation. It gives the pilot the option to land and drive in bad weather, provides integrated ground transportation on both ends of the flight, and fits in a standard single car garage at home.  The Transition® can fly in and out of over 5,000 public airports in the U.S. and is legal to drive on public roads and highways. It is the only light aircraft designed to meet Federal Motor Vehicle Safety Standards, and it is also equipped with a full-vehicle parachute for additional safety”

It can fly 500 miles on a single tank of gas, travels at 100 mph, has automated landing capability, is equipped with a parachute in case of emergencies and you can learn to fly it in less than a day.

The company is also working on an electric vertical take off craft, but this is still in the design stage.

I like the idea, what do you think? No more ice cream for the kids, health club for the wife or golf for me and I reckon that by the time I’m 60 I could buy a second hand one.

Why not try Lightbeam?

I have just downloaded and taken a quick look at the new Mozilla add-on called Lightbeam.

I am an UBUNTU user myself, so I don’t know if this will work for other systems, but I would like you to help me decide if it’s an interesting tool either way.

I have always heard that companies share your information. So you go on one site and they share your habits with other organizations. Well Lightbeam shows you who they are sharing your information with.

One thing that I should say is that I do not know what the information they are sharing actually is. If anyone does know I would love to hear. So that is job number one for you down in the comments below.

The actual view that you are presented with when you open this program is very nice. A series of connected triangles that drift around the screen, all tied together like one of those kinnect toys that my kids play with. Some of the triangles have website logos on them, others are blank. It’s almost a snowdrop kind of effect.

Mozilla Lightbeam

Mozilla Lightbeam screenshot

The lines are either white or blue, the blue depicting that the sites use cookies. Probably half of them do.

And it makes a nice little educational game. As you visit another site it joins the page with its connections, the entity wobbles and bounces before coming static. Many of these connections are the same, creating a central mass, but some sites do not share with anyone that the others do, and live in their own little detached bubble.

I was surprised to find that ebay UK is not connected to any of the other sites. It has 3 satellite sites but they are all ebay subsections. I would have to draw the conclusion that ebay do not share your information. Job number 2, correct me in the comments below please.

The Weather channel divulge to another weather channel and 3 or 4 others, CNN and the BBC are about the same. TECHNOLOGY BLOGGERS DOES NOT SHARE WITH ANYONE! Read it and weep and respect where it is due Christopher. My employer the Bassetti Foundation are linked to Twitter, and nobody else.

Oh and guess who is in the middle of the blob, tentacles everywhere, yes of course, Facebook. I have not visited the site but they appear through the mist to take centre stage. No wonder profits are up!

Without understanding more this add on is just a toy to me, but I am sure if I was a bit more savvy it could give me a lot of insight into the dark and murky workings of the web. I think it might also present an opportunity, as we can now see who is prostituting our information and who is not, and maybe we should put more trust in those that keep our data in their own hands, and some others a little less.

Definitely worth a look I would say.

Oh on a final note, I went to Microsoft, Ubuntu and Mozilla. Microsoft share with 10 satellites, 5 of which use cookies. Ubuntu and Mozilla do not share with anyone. I visited 15 sites in total during my research, and that meant that I unwittingly connected to 76 third party sites.