Why Privacy is About to Change

The world of data privacy is about to change. Currently most companies feel free to treat your personal data as an asset that can be leveraged by their company. As you no doubt have realized, many companies sell your personal information to other parties to cross sell their products. For example, my friend Marc once put his dog’s name when answering an online promotion only to see that his dog started to get a lot of related mail over the next few months.

This problem is getting much worse. With the rise of social networking and people’s dependence on the Internet, much more of our private information is now available online. For example, banks often use “private” information to verify your identity when calling customer service. But now such information like mother’s maiden name is easily accessible via Facebook.

My prediction is that two things are about to happen. One is that people are going to start to become much more concerned about their privacy as they continue to put more and more information online. Secondly, some company with lots of private data (like Facebook) is going to play a bit too fast and loose with privacy, causing a public catastrophe. As the importance of privacy increases and companies fail to safeguard it, we’re looking at a major change in public policy on privacy. Likely this will mean that consumers will own all of their data and companies will need explicit permission to share it with others.

When I talk to people about this, I often get the response, “This is technology, it’s no place for government policy.” But once technology becomes entrenched into our everyday life, that is exactly when it starts getting regulated. Remember that 100 years ago electricity and telephones were the top technologies of their day and now they are two of the most regulated industries on earth.

As an example I’d like to talk about another new technology that totally changed the world. It was introduced in Seattle in the early 1960s at theSeattle Artificial Kidney Center. This was one of the first dialysis machines in the world, made possible by advances in technology allowing a permanent stent to be placed into the body. This allowed people to have regular treatments where blood is moved outside of the body and cleansed by a machine. These machines were greatly oversubscribed due to their lifesaving nature and extremely limited availability.

The head of the center Belding H. Scribner knew that making a decision on who should get treatment was incredibly serious. He created the Admissions and Policy Committee to decide who deserved treatment the most. These decisions were based on characteristics other than medical fit -- the patients were already screened by a panel of doctors. This committee was a cross section of society composed of seven lay people – a lawyer, a minister, a housewife, a state government official, a banker, a labor leader, and a surgeon who served as a "doctor-citizen." The group considered the prospective patient's age, sex, marital status, net worth, income, emotional stability, nature of occupation, extent of education, past performance and future potential. Essentially they needed to determine which of these people was "worth" the most.

While Scriber’s solution was a good one, it was shocking when it reached the national stage. In November 1962, Life magazine ran an article called, "They Decide Who Lives, Who Dies.” While the article started as a study into this new wonderful and life saving technique, it quickly became a study of what the author referred to as: The Life and Death Committee.

This article sparked a national conversation and led to the creation and popularization of bioethics. The inventors of dialysis were amazed that public discussion focused on the decision of who got the treatment rather than the amazing ability of the machines to transform what was once a death sentence to a chronic condition.

Today when there are issues on life saving decisions based on limited availability (i.e., for transplant organs) a person’s worth is no longer considered. Doctors use a number of factors such as age and health to wean down the list. Once patients are one the list, organs are distributed based on severity of the condition, the time on the wait list and the geographical distance between the donor center and the hospital.

It’s tempting to think that Bioethics is a much greater social issue than personal privacy. But it’s not. Bioethics has just had more time to mature and enter the social consciousness. In fact, I was once in a business school class where we were presented with the Seattle Artificial Kidney problem of deciding who should live. This was a case study used at both the beginning and end of the class – essentially to show how much we’d learned during the class. However, it wasn’t in a Bioethics class but a Decision Sciences class!

We were given the following problem: “Five people were dying of kidney disease and we only had the ability to save one of the five.” We were given short bios of each person, e.g., a 50 year old doctor with 3 children who is working to cure cancer. We were to rank order which of the people we should save. While the exercise was very interesting and really showed how to rank order on a number of criteria, no one brought up any of the ethical issues. The teacher even seemed unaware of them. Even today with five decades of Bioethics behind us, whole classes of students can ignore the social issues when presented with a technical problem to solve.

In short, technology can often go unhindered while it is being developed; however, once it becomes enmeshed in the social fabric, decisions are not made on technical merits but on how they affect society as a whole. What was once a technical issue becomes a social one. Or to quote Spiderman's Uncle Ben “With great power comes great responsibility.”