Consumers have long been aware that our online data has been sold to third parties and data brokers. When signing the terms and conditions on a webpage, there is usually a disclaimer that your data from interacting with the page will be recorded. This valuable information is either kept and used solely by the business who obtained it or it is sold, usually to a third party or a data broker. This means that your data could be in the hands of anyone with the resources to buy it -- which include industries involved in advertising technology, business IT, risk data, and customer management.23andMe has taken this concept of selling consumers personal data to the extreme by selling consumers genetic information to a third party. When someone buys a testing kit, they are agreeing
to selling their genetic data to an outside company. This company is called GlaxoSmithKline which is a multinational pharmaceutical company. The way it works is that 23andMe sell customers a test kit, the customer spits in a tube and sends it back, 23andMe analyzes the DNA and sells the information.
Although this information is currently being used for researching drugs that could potentially save and better the lives of millions of people, the process is wrong for two reasons:
1. Consumers are unknowingly exploited for profit.
2. This data could end up in the wrong hands.
The first reason is reasonably intuitive -- if we are giving someone something of value, we should receive compensation for it. 23andMe can sell our information for $100 - $200 which they charge the consumer a minimum of $99. Consumers are already profited from by selling them a hundred-dollar plastic test tube but then are exploited even further by having their genetic information then sold to large pharmaceutical companies.
The second reason is one that is far more catastrophic. Although the data is being used for good, it could easily be sold to a company that will use it for self-interest. For example, if this data was sold to an insurance company, it could be used to see who is more likely to have a disease before they even have it! If you have a healthy blood line, this could mean lower insurance costs since you are less likely to be sick. To people who have a family history of a disease, this person may be subject to high premiums and poor coverage due to a disease this person may never have.
Ultimately, 23andMe could be a company that helps in the research to save and better peoples lives. In order to achieve this, they need to be more transparent with the consumers. First, consumers should be able to opt in or opt out of their genetic data being sold. This could include some sort of compensation for consumers that opt in since profit is made from the transaction. Second, consumers should be able to see who is buying this data. Most people would agree to allowing a company to access their genetic information if it was for a good cause, but would deny a company access that would use their information for exploitation. 23andMe's slogan is "Welcome to You", but we have to be aware that you aren't the only one who is
Honestly, I fail to see the counterargument for why insurance companies, given they obtain data in an open and ethical way, should not be able to raise/lower rates based on a person's medical history (which includes their relatives). They are changing their decisions in light of new information, which will probably end up being net zero for everyone anyways once they recalibrate rates to fit an average "healthy" person. Sure, you may not get the disease your grandparents had, but you're more likely to. And that's already how insurance works. What's so wrong about that?
ReplyDeleteI agree with the comment above me, insurance has been using all the information it can since the start of the industry. Even today they still ask your gender and age for car insurance because that has a significant impact on the chances of you making a claim. I do agree data should be opt-in / opt-out but I would argue it already is in many ways. Lots of people aren't aware of how 23andme uses your data so that may still be an issue, however most other data collection is totally voluntary. People choose to post on social media, share their location, make search queries, and upload personal data like likes and dislikes every day. I think your idea of personal security is vastly overblown, people have shown that they don't care about privacy.
ReplyDeleteI disagree with some of the points of the comments made above me, as I definitely see the point of your argument here. While younger people may not care about their privacy as much, older people and those who are not as literate when it comes to technology and their data do care -- they just don't know what they're getting into. Maybe to better make the argument of why this is important, you could talk about the people who inevitably do not know, and will not understand. For example, my 71 year old grandma did a 23-and-me test this summer. She definitely has no idea what they will do with her genetic information, I am sure she thinks it is all private. Your points are all valid and strong in my opinion, but maybe focus more on why this matters as well, based on the feedback above.
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ReplyDeleteThough I don't believe a name would be attached to any data that 23andme sells to insurance companies, I am in complete agreement that consumers should be able to access the data that is being shared with other companies to make a profit. I know that other companies in the business of collecting and selling data anonymize it enough that individuals cannot be distinguished by the buyers of the data. However, this brings up a good question, which is the degree to which data ought to be anonymized. Obviously if your name is attached to a piece of data, an insurance company could target you, but also if you are part of a group that is deemed to be a larger burden on insurance companies, you will likely still be affected. Overall, really interesting post. If I were you, I would tie this idea back to the readings a bit more explicitly.
ReplyDeleteYour post did a good job of uncovering some hidden dangers associated with sharing your genetic data with companies like 23andMe. It's true that many consumers are unaware that they are signing their data away when they use certain services. I think you could also touch on the dangers associated with any mishandling of genetic data as it becomes more commonly used for identification and other purposes. Additionally, I think the link to the readings is very surface level in this post. It isn't too clear to me which readings/ideas from class inspired the post, though the topic is relevant.
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