Home genetic testing, pros and cons

Recently I have been getting interested in home genetic testing. I have written a few articles about this matter, including a 3 part post on the Bassetti Foundation website about a conference that I attended a couple of weeks ago at Harvard University.

The speaker at the conference was Anne Wojcicki, CEO of the world’s largest commercial genetic company called 23andMe. They offer a kit that you spit into and send back, then they analyze 4 million variables and you check out the results online.

Recent technological advancements have brought the price down beyond belief. What cost $100 000 a few years ago and took months cost $1000 last year and now $300  and can be done while you wait.

What they call Next Generation Genetic Testing has meant that the analysis has become incredibly more intricate, where as a few years ago they analyzed a few thousand proteins, they can now do millions, so if you already had your genome sequenced a few years ago you might want to re-do it to gain ever more information.
A strand of genomeAs I said I went to this conference with the CEO from 23and Me. They are a relatively new company but have the majority of the market share in DNA genetic analysis. The CEO very much presented her organization in business terms, but continuously highlighted the research they conduct in looking for cures for new diseases. They have amassed an enormous database and can conduct statistical analysis on Gene mutations in a few hours that only a few years ago (or without them they argue) would take years.
So what do they actually provide you with for the money?

Results are viewed online, and consist in various types of analysis presented as bar charts, pie charts and statistics. So one line of interest is where your Genes come from, for example how much of you is from Africa, Asia, Europe or elsewhere. How much of you is Neanderthal.

Then we get into the interesting stuff about how your genes relate to your parents, who are you most like.

Carriers and sufferers of diseases learn about their mutations, so if you have or are carrying a genetic disorder this information is also presented.

Then we move onto risks for the future. What percentage rise in risk do you have in your genes for developing certain diseases? Maybe you have a 20% rise in risk of developing Alzheimer’s or getting breast cancer. Here we are moving out of the present and world of scientific analysis and into the world of risk.

A world of interesting information and probably very useful in many cases and just a bit of fun in others, but I would like to raise some issues about the above.

No doctors are involved in giving this information, an individual reads their results online, so one of my reservations is about interpretation. What does a 20% rise in risk of breast cancer mean? How does an individual react to such news? What can or will they do? Also in terms of a negative result what are the effects? I have reduced risk of contracting breast cancer so I skip my mammogram for a few years, after all I am at low risk.

And what if I discover that I have some kind of genetic disorder? Well should I tell my brothers? Maybe they have it too. Do I have the right to tell them? Or am I obliged to tell them? Do they have the right to know or indeed the right not to know?

And ancestry, what if I discover that my father is not the man my mother is married to?

Then as a concerned scientist I start thinking about the data, and discover in the contract I signed (without reading because it is 10 pages long) on the internet gives the company the rights to distribute my genetic information to other research organizations. OK all in a good cause but are they going to make the information non traceable? Is that even possible when such an amount of intricate information is involved? Probably not say the scientists at Harvard.

I am not saying that 23andMe are doing anything wrong at all, their database must be a great resource for science and particularly medicine, possible benefits should not be underestimated and I am sure that their hopes and aims are all pursued in good faith, but I wonder if such a database should not be independently regulated. At present these types of operations are practically unregulated in the US, and maybe this should not be the case. Technology is moving ahead at an incredible rate in this field and nobody can say what this material will reveal, to whom and for which purposes. I note on the video that Christopher linked on his post about Google that they are one of the company’s biggest investors, and as they are a corporation specialized in data collection that does not really surprise me.

Legislation has been passed in the US called GENA, whose aim is to protect individuals from unfair treatment from certain sectors on the grounds of genetic testing. It is not however definitive and as I say only covers specific areas of commerce such as health insurance and employment, but I am dubious about the power of the state to enact laws as quickly as needed. Lawmaking is a slow process in a fast moving world as the genetic testing debate has proved. Equally however we don’t want to slow down the pace of research due to regulation, as that too has serious consequences for individuals who might be looking for breakthroughs in certain treatments.

I fear though that if you pay for such a test and the results show a tendency towards getting a cancer of some sort, a health insurance company might accuse you of hiding or having access to information you should have disclosed, and make life difficult when it comes to paying for the health care you need or for your funeral (I don’t think life insurance is presently covered under the legislation).

Or that one day they might ask you to lick a stick when you go in to the broker to buy your holiday insurance or apply for a job. What do you think?

Why you need waterproof electronics

When I dropped my phone into the toilet I was amazed to see that it continued to work for a few seconds. All hope was quashed however 2 minutes later when it stopped, short, never to work again. I had only paid 26 dollars for it from ebay, but this was not the first time that such an incident had occurred in my household. My wife dropped her phone in the toilet on the day I bought it for her and I fell over whilst wading through a river in a drunken moment of foolhardiness and drowned my first mobile (and almost myself).

None of this need ever occur again however, thanks to nanotechnology. A company called Neverwet has designed an all purpose waterproof coating that can be sprayed on that repels water so well that they can even show a computer dipped into water while turned on still operates. Last year they won the Grand Prix Award as an innovative start up and their product is really quite impressive. Check out the video on their website.

A man working on a computer underwater

Mr Phelps at work

The technology has many applications, it can be used to protect materials used under the sea to prevent corrosion, fabrics or small articles can be either dipped or sprayed, but the most interesting application certainly seems to be in electronics. A mother board can be sprayed and then used in wet conditions without failing. A great breakthrough I think.

If you are interested in weatherproofing you should know that there are already many all weather computers on the market. Terralogic sell a range of rugged computers and accessories for work and military purposes. Obviously if you are carrying a computer on a battlefield it cannot be a domestic lightweight and easily damageable machine, so these beasts are designed to be shock and water resistant, and they come in military green so you stand out from the crowd in your local Cyber cafe.

If you really need to go and work underwater you can purchase the WetPC, designed for the Australian military by Kord Defence Systems. This little baby is designed for underwater note taking, and offers a host of improvements over previous attempts making it much more user friendly through the adoption of its 5 key system. Combinations of the keys perform different functions making the machine suitable for underwater archeology, research and engineering as well as water sports.

If you want to go one step further how about the underwater cell phone? This little package allows you to make a receive calls as you dive, and works either at sea or in the lake or pool at the bottom of the garden.

Underwater Phone

The Alpha underwater phone in use

Joking aside the technology is designed for commercial divers. The kit can be used with any phone that has a voice dialing system, as it sits within a face mask that is attached to a long lead with a floating buoy attached. The buoy hosts the broadcasting technology so that the user can connect to their normal service. All for about $1700 US. Take a look at the Ocean Reef company website for more details and to see what else tickles your fancy.

So just dip your HP into Neverwet for domestic use or go the whole hog with a military machine, the choice is yours, but in the days of rising sea levels it is always better to be prepared.

Apple and some bad press

This week I would just like to do a short follow up on Christopher’s article entitled Why do we stick by Google and Apple but not Microsoft?

I will start with a little story about my 6 year old boy. He loves making things and last week he made a laptop computer from cardboard. It has keys with letters on it, a mouse and a black screen with icons. When it was finished he showed it to me, pointing out the detail, and said “I am not going to put the apple here on the top though, because they don’t all have apples”.

This is the power of branding. In a few years when he wants a laptop of his own what will he want? The one with the apple?

My kind of branding

My kind of branding

Recently though here in the US I have met a few people that do not use Apple products in principle. The reason I think is the bad press that their working practices have received in US newspapers.

I am not in any way endorsing these reports, but I feel that they are worthy of analyzing in a bit of detail, both for their content and their political or ethical standpoint.

The New York Times ran an entire series in which it looked at the human costs of the iPad and apple revolution, and you can read it here (not too long).

The opening lines speak of an explosion in which 2 people were killed as they polished iPad cases. This is not the only reported explosion either, and there are plenty of cases of people being burnt as they use chemicals without proper safety procedures, excessively long days spent entirely stood up and child labour.

It is not just Apple though that use these manufacturing plants however, and the scale of the operations is incredible. One of the names often cited for criticism is Foxconn, and they do a lot of Apple’s assembly. They have 1.2 million employees in China, some plants have more than 100 000 workers, they operate 24 hours a day, can call upon their work force at any time and start production within minutes of receiving orders. This is what the technology of today requires and produces.

Apple do have a code of conduct within its supply chain, drawn up and expanded upon since 2005. Audits are conducted and violations unearthed and they say that this is a sign of their commitments to improvement, but some say that the fact that they problem is continuous points to a toleration of non compliance.

Last year they found 4 deaths and 77 injuries within their production system, and several suicides. Now one death or injury is too many, but with a workforce of well over a million accidents will happen, and some might even see this as a good record. Apple state that they train their workforce and explain their rights to them.

One thing is for sure, the stakes are high and there is a lot of money to be made but Apple is a demanding company. And they are not the only ones with dodgy working practices, but seem to be singled out for criticism.

Why might that be I wonder? Maybe it is because as Christopher hinted they inspire such loyalty amongst their users, and some circles do not like that.