Posts about publicparts

Very public health

Watching the remarkable Xeni Jardin tweet her mammogram and cancer diagnosis, then blog eloquently about it, then crowdsource opening up her own MRI data makes me ask: Why are we so secretive about sickness and health? And what do we lose because we are?

The answers to the first questions are fairly obvious. First, we keep our sicknesses secret, we say, because we fear we could lose insurance. Except insurance companies force us to reveal our medical histories anyway. And let’s hope that Obamacare — may it survive the Supreme Court — succeeds in outlawing the denial of health coverage due to preexisting conditions. Next, we fear that we could lose jobs. Except in cases where a condition would affect job safety, shouldn’t employers be told that they cannot discriminate on the basis of health? Whether or not society chooses to address these issues through legislation, my point is that it’s possible to do so.

The other reason we keep sickness secret — the bigger reason — is stigma. We don’t want people to know we’re ill. But in this day and age, why should anyone be ashamed of being sick? To be clear, I am not saying that anyone should ever be forced to reveal health information. But why should our norms, stigmas, and economic considerations force us not to reveal it?

Imagine if we didn’t feel compelled to hide our illnesses. Imagine if we could be open about our health. What good could come of that?

We could learn more about correlations, which could yield information about causation and even cures. Given large data sets, we could find out that people who get a disease share common behaviors or characteristics. We might gain the opportunity to discover an environmental cause to a local outbreak of, say, breast cancer, enabling a community to fix the condition and prevent more cases.

Of course, I want to emphasize the conditional: correlation *could* help. One data point is never meaningful: That I’ve contracted one heart condition and two cancers since being at the World Trade Center on 9/11 is meaningless — unless there are many others in the same boat, and even then, one mustn’t jump to conclusions about causation. Still, more data is always better than less.

With openness about health, we could do a better job connecting people who share conditions to get information and support and each other. I am on the board of Learning Ally, formerly Recording for the Blind and Dyslexic, and at our last meeting, I was struck by the barriers that stigmas put in the way of young people getting the organization’s help. I heard how getting our software on iPods has helped more kids use the service because they no longer have to carry around a special device that marks them as different — stigma. I heard a mother say that school officials warned her that her child would be labeled — stigma — if she got him appropriate services, but she said she’d eagerly embrace the label if it got her son the help he needed.

On my blog, I’ve been in a debate about the recommendation by a government panel that men shouldn’t be given the blood test for prostate cancer anymore because, statistically, it hasn’t been shown to save lives. That’s because medical science can’t yet distinguish between fast- and slow-growing prostate cancer. I say men should get the test. I say we should be talking openly about our prostates as women have fought to talk about breast cancer. More information and communication is always better than less.

The real question is what men choose to do when they find out — through a biopsy following the blood test — that they have cancer. Perhaps more men should choose what the doctors call watchful waiting over surgery. But, you see, the problem is that we don’t have *enough* data to make a good decision. I want to know, based on the largest possible population, how long it took prostate cancer to spread after it was found. Then I could decide how long to watch and wait. But I don’t have that information. So I chose to get the cancer out of me. I could make that choice only because I had the test. I had my own data. If I had the data of millions more men, I could make wiser decisions.

How could get get more data?

Step one is to encourage men to talk about their prostates — and, yes, sorry, their penises — so we disarm the stigma about it and get more men to be aware and get tested and share their experience.

Step two is to create the means to open up and share as much health information as possible so researchers, doctors, and hackers can dig into it and find correlations and patterns and questions worth pursuing, perhaps leading to answers.

When I talk about the principles of an open society in Public Parts, this is what I mean. Rather than reflexively declaring that sharing information about ourselves — our bodies as well as our thoughts and actions — is dangerous, we must stand back and ask what benefit could come from such data, now that we have better technological means to open it up, gather it, and analyze it.

Only then can we balance the benefits and risks and decide, as a society, how open we want to be, how open we should and need to be — and why. That is the kind of discussion about privacy and our changing norms I’d like to hear. Let’s not just talk about what can go wrong now but also what could go right.

: LATER: Some added links:
* Larry Smarr quantifying his own health.
* On being a medical data donor.
* Give us access to our own health data, online.

Something for that new ebook reader….

If I may be so bold and greedy to suggest something to fill that new Kindle, Nook, iPad, iPod…..

* Public Parts on Kindle
* Public Parts on Nook
* Public Parts on Google ebooks
* Public Parts on Audible
* Public Parts is not yet available on *Kobo* (until I have a hissy fit).
* Public Parts on Apple iBook
* Public Parts on Sony

* * * * *

* What Would Google Do? on Kindle
* What Would Google Do? on Nook
* What Would Google Do? on Google ebooks
* What Would Google Do? on Audible
* What Would Google Do? on Kobo
* What Would Google Do? on iBook
* What Would Google Do? on Sony

FTC Fines Santa Claus Over COPPA Violations

WASHINGTON–Federal Trade Commission Chairman Jon Leibowitz today announced a record fine against Santa Claus for violations of the Children’s Online Privacy Protection Act.

“Mr. Claus has flagrantly violated children’s privacy, collecting their consumer preferences for toys and also tracking their behavior so as to judge and maintain a data base of naughtiness and niceness,” Leibowitz said. “Worse, he has tied this data to personally identifiable information, including any child’s name, address, and age. He has solicited this information online, in some cases passing data to third parties so they may fulfill children’s wishes. According to unconfirmed reports, he has gone so far as to invade children’s homes in the dead of night. He has done this on a broad scale, unchallenged by government authorities for too long.”

Claus was fined $2 million and ordered to end any contact with children. Prior COPPA fines include $1 million against now-virtually-unknown social site Xanga, $400,000 against UMG Recordings, and $35,000 against notorious toymaker Etch-a-Sketch.

The FTC action follows similar complaints against Claus brought by European privacy authorities. European Commission Vice-President Viviane Reding has complained about Claus holding data on children outside of EU data-protection standards in North Pole server farms. German head of consumer protection Ilse Aigner has called for an investigation of Claus’ use of Google Street View in navigating his Christmas Eve visits. German Federal Commissioner for Data Protection and Freedom of Information Peter Schaar has demanded that Claus give children, naughty or nice, the right to be forgotten in his data base. And Thilo Weichert, head of the privacy protection office in the German state of Schleswig-Holstein, demanded that German web sites take down any Facebook “Like” button referring to Claus.

Meanwhile, Canadian Privacy Commissioner Jennifer Stoddart has attempted to bring together an international coalition of privacy officers opposed to Claus’ practices. In California, Claus has been threatened with severe penalties for nonpayment of the state sales tax. And the UK has vowed that Claus will be detained and could face extradition should he set foot in any English chimneys on Christmas Eve.

Reaction to the FTC decision was mixed in Washington. Republican presidential candidate Rick Perry vowed to kill the Federal Trade Commission, relieved that he had finally recalled the final agency he had marked for death. Rival Newt Gingrich suggested that Claus apply for U.S. citizenship, “having contributed much to U.S. industry by stimulating greed at all ages; we need more Clauses and more spending to fix this Democrat-ruined economy.” Ron Paul suggested that Claus set up a Liberatarian nation at the North Pole and offered to run for office there. Herman Cain, whose candidacy remains on hold after allegations of sexual improprieties, said that he “always wondered why the old coot didn’t get in hot water for plopping kiddies on his lap; seemed a lot creepier than anything I ever did.” President Barack Obama refused comment.

From his North Pole headquarters, Claus said through a spokesman that he endeavored only to fulfill children’s dreams. “I regret that the world has come to this: treating any adult who wants to make a child happy as a dangerous stranger,” he said. “The problem with our modern world is not technology but fear, suspicion, and cynicism.” He vowed to continue his Christmas mission of joy. “What’s the worst they can do to me?” he asked, “cookie me?”

Contact: Elfelman Public Relations
Photo via Dreadcentral

Do-not-track hypocrisy

Sunday’s New York Times editorializes in favor of Do Not Track and other privacy legislation going through Congress and the Federal Trade Commission. Yet The New York Times itself makes much use of personal, private, and tracking information itself. Indeed, it requires tracking.

The editorial (my emphasis): “Congress should act on the F.T.C.’s recommendation to establish a system that would allow consumers to effectively opt out of all tracking of their online activities. There are other worthy proposals, including the administration’s call for limits on the collection of data about consumers online. Lawmakers have proposed about a dozen privacy bills this year alone. But with Congress stuck in a partisan rut, it is reassuring to see the F.T.C. at work.”

Now read The Times’ privacy policy (and highlights):

* If you subscribe to the print New York Times, the company will sell your name *and address* and other unspecified data to others. “If you are a print subscriber to The New York Times newspaper and subscribed either by mail, phone or online, we may exchange or rent your name and mailing address and certain other information, such as when you first subscribed to The New York Times (but not your e-mail address) with other reputable companies that offer marketing information or products through direct mail.” That’s not opt-in; it’s opt-out.

In Public Parts, I argue that privacy policies in old media have long been far worse than online. Magazines, newspapers, and other recipients of your media money have for years sold information about what you read and consume and who you are and where you live to large data-base companies and marketers. If a library or an online site did that, it would be shot. But The New York Times does that. Want to pass a law about that, Times?

* The New York Times requires that you use cookies. It decrees: “You will not be able to access certain areas of our Web sites, including NYTimes.com, if your computer does not accept cookies from us.” So what happens when Congress passes Do Not Track, Times?

In its explanation of cookies, The Times says: “Our registration system requires that you accept cookies from NYTimes.com in order to log in to our Web site. Cookies are not spyware, viruses or any other kind of malicious program. For best results, set your browser options to accept all cookies from NYTimes.com. You can use your browser options to clear the cookies later, if necessary.”

Precisely. You have many means now to get rid of cookies: You can turn them off, kill them at the end of every session or whenever you want, or open a private session (an “incognito” window in Chrome) that relays no data about you. Do Not Track is redundant. It’s political cynicism.

Oh, and The Times — which gathers more personally identifiable data about you than most any other newspaper — could not operate its paywall without cookies.

* Just like other online marketers, The Times uses cookies to target advertising. “The New York Times Home Delivery Web site also transmits non-personally identifiable Web site usage information about visitors to the servers of a reputable third party for the purpose of targeting our Internet banner advertisements on other sites. To do this, we use Web Beacons in conjunction with cookies provided by our third-party ad server on this site.” Would The Times outlaw this essential business behavior? This is how The Times earns its premium rates with branding advertisers.

* The Times hires a number of analytics companies to track your behavior, from the creepily named Audience Science to WebTrends for the web and from Localytics to the fluffily named Flurry for mobile.

* The Times logs what pages you see and uses that to recommend content.

* It logs your location if you use mobile applications.

* It allows third-party ad servers to place cookies on your computer and track your behavior.

Note, too, that The Wall Street Journal, which has been on a Reefer Madness high regarding privacy, also collects personally identifiable information and connects it to browsing history without users’ permission. More hypocrisy.

Mind you, I do not object to any of these tracking behaviors. They are, in my opinion, necessary to pay for the content we get from The Times and The Journal and much of the rest of media. They are used to reduce noise, repetition, and irrelevant advertising and content. They are all-in-all harmless and have been demonized by privacy’s regulatory-industrial complex and now even by The Times. If The Times gets its wish and Do Not Track passes, enabling too many consumers “to effectively opt out of all tracking of their online activities,” then I fear we will get less content or more paywalls or both.

I also argue that media and marketing companies have done a godawful job of letting their customers know what information they were gathering and what they were doing with it and how consumers benefited. They long ago should have learned from Amazon, which reveals what it collects and what results and enables customers to see and control and correct that information (which also only gives Amazon yet more valuable data). So it’s their own damned fault they’ve been demonized, opening the door to the cynical pols and bureaucrats who proposed Do Not Track — and to their allies, such as The Times editorialists, who argue on the basis of nonspecific emotions rather than tangible facts about harm and consequences.

Occupy #OccupyWallStreet

It is time for Twitter and its citizens to take back #OccupyWallStreet.

I say that with no disrespect to the efforts and sacrifices of the people who have taken the hashtag literally and moved into Wall Street and cities around the world, confronting the institutions — financial, government, and media — they blame for our crisis.

To the contrary, I say it’s time to carry their work back to our virtual society, where it began, to expand the movement so Michael Bloomberg and his downtown goombas and mayors and cops cannot think that they are able throw it away in a garbage truck; so banks cannot hope to return to their old ways; so media cannot think that it can dismiss #OWS as fringe (see the BBC and the FT each calling the movement “anti-capitalist” when many of us say the real goal is to reclaim capitalism from its crooks).

It is much bigger than the scores of occupants in each city. But that still raises the question of what “it” is.

That is where I believe Twitter can grow and give shape to the movement. There we can answer the question, What are we mad as hell about (should that be a hashtag debate: #why…)? There we can organize no end of irritants for institutions (we can play whack-a-mole with the banks’ rip-off fees and leave them as customers). There we can hold politicians to account.

Some have argued that #OWS will not grow up as a movement until it becomes an institution and has leadership and spokesmen and unified goals and messages and even candidates for office.

Heaven forbid.

#OccupyWallStreet, in my view, is anti-institutional in that it is fighting institutional power and corruption and in that it is not an institution itself. I believe the value of #OWS is that it enables us to say how and why we’re angry and to make the powerful come to us and beg us for forgiveness, not to join their games.

#OccupyWallStreet, the hashtag revolution, establishes us, the public, as an entity to be reckoned with. It is a tool of publicness.

So I support #OWS becoming less literal — let Michael J Bloomberg tear down the tents — and more amorphous, more difficult to define and dismiss and shut down.

#OccupyWallStreet started on Twitter and spread to the streets. Now it’s time come back online and spread further.

Why are you mad as hell? And what are you going to do about it? That is #OWS’ challenge to us all.