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02/17/2016

A Generation Gap Between Privacy & Confidentiality

by Craig Klugman, Ph.D.

I was sitting in a quiet coffee house when a woman at the other end of the café says loudly into her phone, “ I can send in a copy of the pregnancy test but I really need to have this ultrasound scheduled. The doctor is worried about doing my procedure if I’m pregnant.” Although a private business, a coffee house has a long tradition of being a public space. So why would someone have such a privileged, intimate conversation in public where others can clearly hear (especially when we’d prefer not to).

I’ve written extensively in this blog space about risks to privacy in modern society, whether that be in medical records, implantable technology, how we share our personal information to the world, recording medical encounters, recording residents in nursing homes, and companies selling your prescription information. This does not even touch on the debates about companies and the government spying on us through our online and cell use.

Yet every minute we share 2.5 million items on Facebook, tweet 300,000 items, post 220,000 photos on Instagram, and more. We are warned to be careful about our sharing because employers may check our online life before making hiring decisions. That silly moment on vacation that someone recorded on their phone, it’s gotten millions of hits online and make you look like someone with little judgment. Sharing an article about a particular political candidate, now a potential employer knows your political views. Think about the secret (and illegal) recordings made by the Center for Medical Progress against Planned Parenthood. Or the Sony hack that has led to an uprising over Hollywood pay based on sex.

While older generations are alarmed about these violations of privacy, millenials seem to take them more in stride, or perhaps it’s that they’ve never known a world with privacy.

According to the American Press Institute, only 20% of millenials are concerned about digital privacy. And yet according to the Pew Research Center, 71% of them keep their online privacy settings limited to trusted people-willing to give up sharing to protect their information.

A USC Annenberg Center for the Digital Future study finds that 25% of millenials will trade information for relevant advertising, 56% for discounts, and 51% if they get something in return. And Gallup found that 44% of millenials trust businesses to keep their information private and only 26% percent distrust. This makes millenials the most trusting generation (out of X, Baby Boomer, and Traditionalists).

Analysts are confounded by these contradictions, how can they be so willing to share and trust and also keep their settings high? Millenials are not confused though. In a class discussion on medical privacy, it became clear that I and my class of mostly millenials had different notions of privacy. Legally, privacy is the right to be free from intervention, to not have your personal matters disclosed or publicized, a right to be left alone. In bioethics, privacy is that a person has an interest in controlling access to personal or proprietary information and even deciding what information is personal is personal or proprietary. For those of us older than the millenials we conflate privacy with confidentiality—the idea that when we do share private information, it will be protected and held in confidence by others.

 

Millenials do not confuse the two. In fact, they cling closer to a pure definition of privacy. For them, there is privacy but no confidentiality. If you share something with anyone then it’s out there. So instead of trusting people to keep their information a secret, they presume it will get out there. Us older folks are often appalled when a perceived private moment is recorded and then released to the internet. We see this as invasion of privacy. Not so to the millennial. According to my students, they presume that every word and action is being recorded. The only things they do when they are not alone are things that they are okay with being shared. (Given the plethora of embarrassing moments that are out on the internet, we could discuss whether they possess good judgment, but that’s another essay entirely). If even one other person is around, they assume it’s public.

Given that in HIPAA and other bioethical contexts the term privacy often refers to confidentiality (protecting personal health information shared with a health care provider) this can lead to some problems in providing care. Consider that millennial with an embarrassing symptom or cause of their disease may not share it. After all, if you do not believe in confidence and that privacy only exists if you do not share at all, then you are unlikely to tell your doctor. This is echoed in the annual Deloitte Survey of U.S. Health Care Consumers which found that millenials are the generation least concerned with health information privacy—most likely because they expect any information that is not kept to oneself to be shared. And they are the generation that most wants to see their medical records online.

As the ACLU has suggested, millenials are concerned with privacy. But, they have a notion of privacy that says anything shared is public. The idea that personal information would be held in confidence is what may not be in their lexicon. After all, they’ve grown up with their parents taking hundreds of pictures of them and video recording a substantial portion of their lives. Not sharing is the only way to control your information. Perhaps these are lessons for the internet world that we should all take to heart. For medicine, getting patients to open up may present new challenges.

As for living in the world of the panopticon, Big Brother is watching, and he’s streaming it live.

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