The Privacy Divide: Social Media and Personal Genomic Testing

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With every advance in technology comes a trade-off of some kind. Where the use of personally-identifiable information is concerned, the trade-offs typically involve the exchange of privacy and confidentiality for a non-monetary benefit. In the early days of social media, conventional wisdom said the product was the service. However, we have seen over the last decade that the users of such platforms are the products, the perceived benefits merely carrots on sticks to keep the products (users) engaged in the cycle. We willfully pour details of ourselves into various social media outlets, despite the documented bad behaviors by giants like Facebook, and mostly remain complacent in having our personal data packaged and leveraged against us by various business interests.

However, in the conversation I’ve had around personal genomic testing (PGT), I’ve noticed that many are quick to cite data privacy and risk as a key reason not to participate. Think about this. On one hand, we have evidence to prove Facebook has been using our data in dubious ways, yet we keep pouring ourselves into it (McNamee, 2019). On the other hand, the potential benefits of PGT are outweighed by a fear of that data potentially being misused.

My purpose is not to minimize the potential hazards around PGT. Consider the following risks: (a) hacking; (b) profit or misuse by the company or partners; (c) limited protection from a narrow scope of laws; (d) requests from state and federal authorities; and (e) changing privacy policies or company use due to mergers, acquisitions, bankruptcies, et cetera (Rosenbaum, 2018). In the face of potential benefits from PGT, these are serious caveats. But read that list outside of this context, and it is equally applicable to the data we generate and provide to social media outlets on a daily basis.

As of yet the privacy regulations around social media use only exist within the context of the company itself—that is, there are no substantial federal regulations in the US on the matter, only the GDPR in the EU (St. Vincent, 2018). Where health information is concerned, the US does have slightly more mature federal regulation. The Health Insurance Portability and Accountability Act (HIPAA) requires confidentiality in all individually-identifiable health information; in 2013, this law was extended to genetic information by way of the Genetic Information Nondiscrimination Act (GINA). While the rules prohibit use of genetic information for underwriting purposes, there is no restriction on the sharing or use of genetic information that has been de-identified (National Human Genome Research Institute, 2015). De-identification is not entirely foolproof. There are cases in which the data can be re-identified (Rosenbaum, 2018).

The incongruence is puzzling. In the case of social media, users willfully provide a wealth of data points on a regular basis to companies that repackage and monetize that data for dubious purposes, in the absence of meaningful US legislation to protect it. In the case of PGT, where at least HIPAA and GINA have a rudimentary level of codified protection, users’ hesitance appears to be much more pronounced.

References

McNamee, R. (2019). Zucked: Waking up to the Facebook catastrophe. New York: Penguin.

National Human Genome Research Institute. (2015). Privacy in genomics. Retrieved from https://www.genome.gov/about-genomics/policy-issues/Privacy

Rosenbaum, E. (2018). Five biggest risks of sharing your DNA with consumer genetic-testing companies. Retrieved from https://www.cnbc.com/2018/06/16/5-biggest-risks-of-sharing-dna-with-consumer-genetic-testing-companies.html

St. Vincent, S. (2018). US should create laws to protect social media users’ data. Retrieved from https://www.hrw.org/news/2018/04/05/us-should-create-laws-protect-social-media-users-data

History, Because We Made It

This day in history, exactly one year ago, a plate of food was put before me at a restaurant, and it was so beautifully presented that I absolutely had to snap a photo and post it to Facebook. #foodporn #omg #goingtomyhips #bejealous #howmanymorehashtagscanIthinkof

Not really. But I expect this sort of notification comes about on a Facebook timeline once every few hours across the world.

We have Timehop and On This Day to thank for commemorating the mundane. What used to be a collective effort–history–has become increasingly selfish, says Sarah Senk in Slate.com. I agree. I could go on in the echo chamber re: selfies and increasing eye-to-screen time, adding more volume to the already overpacked “we are too selfish” chant. However, I suggest that Senk’s take is different enough to talk about. In fact, I may share it on my timeline.

By replacing events of broad cultural significance with mundane “events” of little to no relevance to anyone else, Facebook seems to be transforming our understanding of commemorative practice in two ways: It hastens the process through which events get treated as “historical,” and it lowers the bar regarding which past events get to count as “history.”

Imagine someone wandering down to Dealey Plaza in November 1963, taking a selfie in front of the Depository, and captioning: “Just woke up. Need coffee. Oh, and the Prez is here today.”

By privileging an anniversary regardless of the content, Facebook urges people to go through the motions of retrospection, to have feelings of nostalgia generated more by the automatic action of marking time than by any specific event or experience. In this way, On This Day risks transforming commemoration into a meaningless gesture, in which all one really reflects upon is a potentially empty process of reflection itself. Look at me being pensive and nostalgic and caring about the past, the user gets to feel while contemplating how something happened “one year ago today.”

I remember when my sense of history went from planar to linear. I sat at home with my family watching videos of my childhood that they decided to bring out on my 21st birthday. Until that point, I’d looked back on memories as these random things I could pluck from an array of life events, and vaguely thought of myself as disassociated from that person in the recollection. Watching those films, though, I realized that same kid was me, and everything between that point in time and the present was the sum of who I was at that point.

It was a genuine action of marking time and realizing how it impacted me. Says Senk: “In place of a shared object, we have a shared process of remembering something, anything.” I sat there and shared the object with my family on that birthday evening. In contrast, Timehopping only requires me to acknowledge that a commemoration is necessary, and I should share/post/tweet with a witty or nostalgic comment. The plate of food is, and was, all about me; the old home movies were about us.

There are, of course, arguments for histories of the mundane. I have done enough literary research through journals and letters to understand this. I don’t disagree. But the difference is real. What separates an artist’s journals on daily food intake with a random #foodporn Instagram shot? Time. If I become famous and important, perhaps in a hundred years my digital minutiae will be of some consequence to researchers. But there’s the rub: deeming who or what is important enough for such recognition usually takes a collective effort. Even histories of local communities are done by way of a collective effort.

I think the arguments are dual and parallel here: (1) empty commemoration for commemoration’s sake; and (2) importance of self vs importance of collective experience.

Of course, this is only my individual assessment. Time will tell.