From Westworld to the Rest of the World: Time to Regulate the Mining of Third Party Data


Craig Klugman

Publish date

Tag(s): Legacy post
Topic(s): BioethicsTV Genetics Informed Consent Privacy Technology

by Craig Klugman, Ph.D.

You do not have control over your ideas, your passions, or even your DNA anymore. Your biological material and your ideas may be taken without your awareness of it. You do not need to consent anymore, for people to take the products of your body or mind. This fact was highlighted in the Season 2 premiere of HBO’s Westworld, a show that echoes many of our high tech, dystopian fears of AI, robotics, and humans relieved of their civil veneer.

Before the show premiered in 2016, their website had a hidden “Terms of Use” for anyone who expressed interest in visiting the fictional park (a great marketing gimmick). According to Slate, under section 7(b):

The terms state that once you enter Westworld, the company “controls the rights to and remains the sole owner of, in perpetuity: all skin cells, bodily fluids, secretions, excretions, hairsamples, saliva, sweat, blood, and any other bodily functions not listed here.” What’s more, it reserves the right to “use this property in any way, shape, or form in which the entity sees fit.”

In the latest premiere, we see a faceless drone swabbing the genitals of a robot (yes, robots have genitals in this world; a robot who presumably entertaineda human guest). The drone then sequences the sample’s DNA. What the terms of use suggests is that this amusement park is collecting biological samples from guests along with information about where they went and what activities they engaged in. As one of the main characters says, ““Are we logging records of guest experiences and their DNA?”” Since the right to do that is buried in the Terms of Use, the answer to that question is yes.

As viewers learned in Season 2; Episode 2, Westworld investors are mining their guests’ choices, biology, and interests while customers were enjoying an entertainment experience. Learning about people’s habits in this way can be useful for targeted advertising, blackmail, even forcing people to do what you want. Imagine using people as data while their guard is down because they think they are having an adventure, connecting with their family, and pursuing their interests. Sort of sounds like Facebook, doesn’t it?

In the last week, news reports emergedthat a 30-year-old series of murders had been solved. Law enforcement uploaded DNA that the perpetrator left at crime scenes under a fake name. On a public (non-commercial) DNA sharing website, GEDMatch, investigators found a family match to their DNA sample. This narrowed down the pool of suspects substantially and led them to a 71-year-old’s identity as the killer.

While a remarkable piece of detective work, the case raises concern about the privacy of genetic data given to or stored on websites. Do we have expectation of privacy from these services? Do we have expectations that if we give DNA to help locate family or to chart our ethnicity that the DNA will not be used for other things to which we have not explicitly consented?

This case reminded me to the nurse in the Utah ER who was arrested for preventing police from illegally taking a blood sample from a patient/suspect. The officers did not have a warrant but wanted to blood anyway. When the nurseresisted, she was arrested and recently won a substantial settlement. These two incidents suggest that taking blood from a patient requires a warrant but using DNA on a website does not. Given the lack of agreement, the question is whether the use of a public database to which one has freely given DNA should be used for purposes to which one has not consented, like law enforcement. Stranger yet, the online DNA was not from the Golden State killer suspects, but his from a distant family member. What one member of the family does with their DNA effect other family members. The suspect probably did not even know that the DNA had been uploaded; the two relatives may have never even spoken. Is this a step too far? Ethically, if the DNA had come from a medical test, then there would be an expectation of confidentiality. Under autonomy, a person can give up confidentiality. However, in the age of DNA, though, giving up your genetic confidentiality also means giving up the confidentiality of all your biological relations.

Do we have analogies where one person agrees to share information which leads to others having their private information taken? In fact, we do. In the case of Facebook and other social media, individuals who took a quiz put out by Cambridge Analytica gave permission(in the fine print) for that company to collect their data and information about anyone connected on their friends list. The national and international moral outrage over this secretive data collection suggest that Facebook users expected a level of confidentiality in their material (an expectation they did not legally have).

If we are incensed by Cambridge Analytica accessing the Facebook data of people who never clicked a quiz that unwittingly gave permission to those parties to collect their data but their friends’ data, then we should be equally outraged that law enforcement pretended to be a person (with someone else’s DNA) on a DNA website to find a family member who consented to uploading their DNA that led to a distantly related killer (who did not consent to having their data online). The plot twist in Westworld is similar—taking people’s DNA, behaviors, and personal information without their explicit knowledge to sell the data to a third party that can target these same people to buy things or act in certain ways. Since Westworld is collecting DNA, the company gets information on people who never went to the park and never agreed to the expansive terms of use. The concept for all three is the same–a person who never consented to having their information used by a third party, had their information used by a third party. The difference in public reaction is because in two cases, the victims were “people like us”—that is good and innocent people who were harmed—and in the other case, an alleged murderer was charged.

The lesson is never agree to these nefarious terms of use, even if it keeps you away from the entertainment offered. No, you won’t find out which character you are most like and you won’t get to shoot a robot. The entertainment is not the product; your information is the product and the company owns it. The entertainment is a sleight-of-hand distraction so that while you are looking at the left hand, you do not see that the right hand is taking advantage of you.

Westworld takes us on a ride this season to understand the reason they are collecting information and biological samples as art, but also as social commentary on what is happening in politics and law in our society. The plotline is likely based, in part, on the actions of Cambridge Analytica, Facebook, Google, and DNA services (commercial and public). Sci fi has always been a mirror for reflecting on our society. We are supposed to be curious and enraged by the actions of the corporate owners of Westworld. We are outraged by invasions into our social media even though there are no expectations of privacy there. At the same time, we celebrate the capturing of a killer using similar techniques and having the same ethical fact pattern. How we deal with this question–accumulation of the data of a third party who has not consented but who is linked to someone who has consented–is important to defining who we are as a society as we move further into the digital and the biologic ages of technology. Are we a people who value privacy, confidentiality and consent? Or do we simply say it’s too hard and the entertainment outweighs the risk, so we’ll let it be? I hope we follow the first path and begin crafting policies and regulations to ensure that we protect people from increasing threats to privacy and confidentiality.

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