5 Reasons Why You Shouldn't Consider Genetic Testing Services

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.

If you disagree or have any arguments to add, feel free to speak up in the comments.


Comments

    Number 5 should be number 1. There's one thing certain in this life, why worry about what you can't change?

    No matter what you say, knowledge of a genetic condition can't have a positive impact on your life.

      But then there are those who say that knowing that you have a genetic predisposition to, say, heart disease can compel you to make lifestyle changes for the better? Especially when heritability is less of a factor than environmental factors.

        Seeing as heart disease is the biggest killer, everyone should be making those changes anyway. You could apply that to a lot of things. And extra stress doesn't extend your lifespan...

    #4 wasn't an issue for me at all - Admittedly it was for genealogy testing so it may be a slightly different process, but it's still a matter of getting your DNA sample sent off - as I could just post it at my local post office.

      I had to drive to the DHL depot at Sydney airport, after the DHL depot in Alexandria said that they couldn't accept it there...

        @Elly - Out of curiosity, why wouldnt DHL Alexandria accept the package? All they'd be doing is forwarding presumably to the Mascot depot to head abroad.

        The only reason I can see why it would have to go to Mascot specifically - is customs, and having to declare in person what you're sending. If this is the case, unless you live near both a customs office which has the appropriate courier depot attached, you're gonna be doomed to a much longer trip than just ducking into the eastern suburbs from the inner-west.

    Does the company that you send the data to own the copyright of your genome? If you have a novel genetic resilience to say diabetes and a treatment can be correlated to your genome would you profit off it, or the company?
    Do you get the complete output of your genome, and can you then sell it to other companies? Or do they hold the IP of your genome?

    1. The subscription fee is disclosed up front. If you don't think the test is worth the money, don't buy it (or alternatively, wait for the next discount; these pop up pretty regularly).

    2. Genetics is complex, so you have to be willing to use this as an opportunity to learn about modern genetics rather than expecting to be able to immediately and intuitively understand everything in your results. I actually don't know of anyone who explains things like multifactorial disease risk better than 23andMe; feel free to point out examples. But sure, if you're not prepared to spend a bit of time exploring and researching your results, don't take the test.

    3. Before you buy, look at the types of diseases covered by the test. Consider: if I carried a risk factor for this disease, would I prefer to know this in advance so I could engage in extra screening/preventive measures, even if that *possibly* meant a higher premium on my private life insurance (assuming you even have private life insurance, by no means guaranteed in a country with a good public health system)? If the answer is mostly no, don't buy the test.

    4. I've had seven relatives submit samples to 23andMe from Australia. In every case they simply called the courier company used by 23andMe and arranged a free pickup from their house (I did the same thing from the UK). Perhaps that has changed recently, but your experience is certainly not a universal one. If it turns out that this is a new policy, and you don't think driving to the depot is worth the effort, don't take the test.

    5. Several studies have been done looking at the psychological response of people to taking these tests; they have consistently shown that people on average don't show any substantial increase in anxiety on learning their results (amazingly, this applies even to serious diseases like Alzheimer's). Of course, if you're unusually prone to anxiety, maybe you should steer clear; you should probably also avoid reading the health section of the newspaper, of course, lest you read an article about mobile phones and cancer risk that causes you to stress out.

    Different people respond differently to risk information. For many of us, information is power: any extra data we can get that potentially helps us to better understand our own health is useful. Other people will prefer to live in blissful ignorance, and that's fine too; if you fit into the latter category, don't take the test.

    So, to summarise, the title of your article should actually be: if you're not interested in genetics, think you might be excessively worried about the prospect of an elevated disease risk, and/or don't think these tests are worth the money/effort/small risk of increased private life insurance premiums, don't buy them. If you don't fit into any of those categories, take a look.

    From the moment you are born you will die. As someone with a chronic illness I am in no way interested in the genetics of the condition. My kids know all about it, and have learned to deal with it all on their own.

    Knowing or not knowing reminds me of an old proverb: Before enlightenment - fetching wood, carrying water. After enlightenment - fetching wood carrying water.

    If you are no better off I feel you are better to not know. What I do for others in the time I have is where I make a difference. And really nothing else matters.

    Keep in mind that once your genetic material is in the hands of a company, lab, etc, it is no longer yours. This is especially so for the US companies and they may be gaining legal status over your genetics, making money off of your genetic material without your authorisation or consent and what is worse - they have all the rights under law to do so.

    There are a lot of good point here, but I think Daniel pretty much answered them all very well. As long as you're willing to keep these issues in mind, there doesn't seem to be much harm.

    These are all very valid reason for not consider genetic testing services. Moreover, I recently attended a lecture at Harvard Medical School on the subject. The lecturer made the experiment of getting genetic testing services from the 2 companies mentioned in this article and from a third one as well. To his surprise, he received very different risk estimates on various diseases by each company. The risk for the sequencing of the same genome where not congruent among these 3 companies. He basically concluded that there is still not enough data to support accurate risk calculation for each one of us.

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