Some good reasons not to go for genetic testing

Posted: April 8, 2011 in science & technology, society
Tags: , ,

Not that I have been planning to get my genes tested, but here are some reasons not to anyway – and they don’t even address questions like who owns the data and intellectual property of the test.

Genetic testing has become a hot topic of moral debate lately, and people seem to be equally divided over its merits. I learnt the hard way why it’s not worth your time and money.

Two well-known services, Navigenics and 23andMe, are available to Australians. I submitted a sample of my saliva to the latter company for analysis and you can find out more about my experience over at Gizmodo Australia.

1. There may be an ongoing cost

If you thought that paying an upfront fee for giving someone your spit was outrageous, double check that there isn’t an ongoing cost for a subscription service. 23andMe charge a mandatory $US9 per month for a “Personal Genome Service” that updates you every time they find something new in medical journals, while Navigenics claims to bring you new information based on your personal genetic makeup for as long as you subscribe. If your curiosity (and your bank account) doesn’t stretch that far, it’s worth considering twice as these services are often bundled in with the service, whether you like it or not.

2. The data is difficult to read and may or may not be relevant to you

You’ll find reports inside reports, and citations to abstracts in medical journals that you’ll have a hard time trying to understand let alone read. There is very little explanation of technical terms and it’s annoying trying to work out if what you’re reading is important or not. They won’t tell you, but you’ll find out that once you log in to see your genetic data some if not most of the results will be useless. The results may assume that you’re of a specific ethnicity or over a certain age. Since the data depends on medical research made publicly available, there’s nothing you can do about this limitation. In other words, there are comparatively few studies done on ethnic minorities, so most of the data will only be relevant to people over 30 and of European descent.

3. You are obliged by law to disclose results when applying for life insurance

You’re protected from discrimination from private health insurance companies, but the same doesn’t go for life insurance. They usually won’t require you to take a genetic testing service, but you are required by law to disclose information that may impact your insurability. So if you get a genetic test, you are obliged to make those results available when making an application for life insurance, and it could affect your premiums, or, worse, decide not to insure you at all.

4. It’s a huge hassle to provide and send off your sample

They’ll send you a fiddly-looking tube to spit in, along with lots of instructions and paperwork. In my case, I had to fill out six forms and borrow a car so I could drop it off at a DHL depot in Mascot. They initially had no idea who should be handling my package and eventually sent me over to the headquarters near Sydney airport. Good luck getting there easily via public transport. That’s a lot more time and petrol right there than it’s probably worth.

5. Do you really want to worry about something that may or may not happen to you?

Genetic testing services are as vague about their purpose as they are complicated with their process. They claim to give you insight into your risk factors for diseases, but at the end of the day, a genetic predisposition doesn’t necessarily mean your fate has been decided. For many diseases, environmental factors play a bigger part than heritability, and seeing that you’re a tiny fraction of a percentage more likely than the average person to suffer from X will stress you out unnecessarily.

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