23and ... My Insurance Company


Once I spit into this weird little tube, it's out there and I can't take it back. Pandora's box. Distopian fears. Gattaca. I read Brave New World at a formative point in my adolescence.

I read the 23andMe privacy policy. The whole thing (#lawnerd). Despite the fact that they can share my Genetic Information with their unnamed subsidaries, I was satisfied that at this moment, at this particular juncture, 23andMe will do everything they can to protect my spit data.

However, 23andMe will disclose my information as is required by law. Rather than rail about the use of my genetic information in the context of civil liberties and criminal law, all I could think of was insurance companies (again... #lawnerd). The law applies to insurance companies. If the law says 23andMe must give my spit info to my insurance company - they'll do it.

Right now there's no legislation requiring 23andMe to hand over genetic information to insurance companies. But... once I spit into that tube, can my insurance company ask for it? Can they deny me life insurance if I say no?

Realizing the jeopardy this issue could pose to their bottom line, 23andMe has jumped on the legislative band-wagon in Canada (and not for the first time). They're supporting Bill S-201 - the Genetic Non-Discrimination Act (aka: An Act to prohibit and prevent genetic discrimination);   23andMe is encouraging Canadians to get involved.

The Genetic Non-Discrimination Act would essentially stop Big Insurance Co. from requiring you to take a genetic test or to disclose the results of a genetic test you have already taken as a condition of providing insurance. In fact the law would apply more generally to entering into contracts in general and also to providing goods and/or services. 

There is, however, one major exception. If you're seeking "high value" insurance, such as long term disability, Big Insurance Co. can require that you disclose the results of your test as a requirement to obtain this insurance, but only if provincial legislation expressly permits that genetic information be disclosed. 

The Feds have left it to the provinces to decide whether or not they want to allow Big Insurance Co. to require this information. It's important to note, this legislation is not the law, yet, and the provinces have yet to grapple with how they would deal with this legislation. That being said, if Bill S-201 becomes law it will be open to the provinces to allow Big Insurance Co. to require my 23andMe results.

Q: What does "high value" mean? 

A: $1,000,000+ OR any insurance contract that would pay a benefit of more than $75,000 per year.

That means if you applied for long term disability coverage that would guarantee your income at $76,000 per year Big Insurance Co. could deny you coverage if you refuse to take a test or disclose the results of a test you've already had.

This level of insurance coverage already comes with a laundry list a mile long of blood tests and questionnaires; however, Big Insurance Co. is chomping at the bit to get at the health data becoming available through services like 23andMe and the wearable technologies (Watch). Some insurance companies have begun providing incentives for people to share their health data (you wear this FitBit and give us access to the info and we'll give you a 10% discount). Nothing against people, but people will generally do anything to save a dollar.

Q: Big Insurance Co., why do you want my genetic information so badly?

A: "We want to want to minimize our risks so we can pass the savings on to our customers. Genetic testing eliminates the possibility of fraud. Also, only wealthy people get this level of coverage - we're only going after Richy Rich's privacy, so don't worry about it." (not an actual quote)

Insurance companies make money like gamblers make money. They manage risk. They're just... you know... better at it. They look at me - young-ish, healthy-ish, no serious family medical history, non-smoker (that's a biggy) - they think, "hey, she's probably not going to die too soon or start smoking". If I buy a $1,000,000 life insurance policy (which seems like a lot, but is actually quite a common amount), pay the premiums for just one year, and die one day later they've lost a tonne of money on that particular policy. This is averaged out over time, but anything Big Insurance Co. can do to predict the future weighs in their favour.

Is there a difference between incentivizing sharing this data and requiring it as a condition of obtaining insurance? Perhaps on the surface. However, the more people buy into these incentives the more the transfer of this kind of deeply personal information will be normalized. Soon information that was "deeply private" will become merely "private" and may eventually become "not private".

Can I use the slippery slope argument here? I believe I just did.

Everybody's genetic profile should remain in their complete and total control, even those fortunate enough to afford higher levels of insurance coverage deserve to hold their genetic cards close to their chests. Bill S-201 is a step in the right direction, but allowing this one exemption does two things:

  1. It places genetic testing and blood tests in the same category - Big Insurance Co. will say "we already test your blood - this is no different" - this is bad because it trivializes the amount of information that can be gleaned from someone's genetic profile. People are already dismissive of defending the privacy of others in an age of Facebook and *shudder* SnapChat, but voluntarily disclosing information and being required to disclose it are two different things.
  2. It leaves the question up to the provinces - Insurance legislation differs from province to province, with some provinces having provincial schemes for car insurance (BC). What if BC decided to set up a provincial insurance company? Could they require my genetic information? They could, because Bill S-201 would allow them to explicitly exempt themselves in certain situations. Does it matter what those situations are? NO. Regardless of the reason, a crown corporation should have no mechanism to demand my genetic information.
Is Bill S-201 good legislation. Yes, in general. Aside from protecting people from being required to disclose their genetic information in most instances, it also prevents discrimination based on that genetic information. However, even allowing for one exception trivializes the deeply private nature of a person's genetic information.

It's not a blood test. It's not just spit. It's me.

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