I recently suggested that putting "free" private personal data into a market context introduces a check to wanton invasion of privacy. This however presumes clear title to the data can be ascertained, an unresolved issue. In fact Christopher Bowe (1) reports insurance companies have come to realize that they too can play the game and parlay their access to patient claims (see diagram) to put pressure on pharmaceutical companies.
So to whom belong the private information generated when a patient visits a doctor? The patient, the doctor or any and all of the organizations created to facilitate this most confidential of transactions?
The stakes are high and deeply personal. Consider these two cases:
To focus one's mind over data rights, consider these two other cases:
- a doctor in India is jailed for telling the sex of a fetus to the parents (*), lest daughters be aborted preferentially to boys
- a mother anonymously confesses having tampered with her medical record (**), so her children would be insurable despite being at risk for a genetic disorder
When the baseball players union can claim ownership to player's statistics and sell these rights on the market place while a mother is not entitled to control the genetic information about herself and her child, something is clearly amiss.
- Major League Baseball Advance Media is suing a company for using baseball player' names and statistics in its "fantasy baseball" (2)
- the Authors Guild and five big publishing companies are suing Google over its campaign to digitize libraries (3)
In defining The Airport Syndrome, my purpose was to show it is but a small step from threats to personal data rights to threats to civil liberties. I rest my case with the ongoing wiretapping debate(4): should the government track phone call patterns of citizens above suspicion simply because it can?
If progress is to be made on data rights, one should not be afraid to ask oneself: "who owns me?".
Throughout history this question has received many answers which our society has come to repudiate as abhorrent: ownership of wife and children by the pater familias in Rome, ownership of slaves by their masters from antiquity down to the XIXth century. Yet modern society is no closer to a solution. The only certainty is that I do not own myself since for instance taking one's life, selling oneself into servitude or simply following unapproved medical treatment(5) are generally forbidden.
In his Antigone, Sophocles brings the issue into a relief which time has only sharpened: is it God or is it the State?
Western Society's answer is to give ownership to the State subject to the limits provided by its constitution. Implementation has proven difficult. Going from the original US Constitution to the Bill of Rights took more than two years and almost 80 to the XIIIth amendment outlawing slavery.
In this context, I submit that the issue about data rights should be straightforward in principle. Taking the United States as an example:
Compared to the enactment of such measures, the storming of the Bastille appears to be child play.
- consider personal profile data of any kind, physical, behavioral, intentional, historical, both as:
- the property of the person concerned, protected by the Fifth amendment from public appropriation "without just compensation"
- equivalent to papers, protected by the Fourth amendment from "unreasonable searches and seizures", data collection being equivalent to seizure
- subject personal data to copyright law, which has already evolved a sophisticated machinery covering such notions as:
- the need to seek and obtain the authorization of the copyright owners and pay royalties to them for commercial use of data
- the restriction of data reproduction, to prevent reuse beyond the original transaction
- the existence of fair use for, among others, academic purposes
Think of how law makers deal today with credit report agencies, meekly suggesting individuals may be allowed to freeze their credit reports. In my opinion this is outrageous for two reasons:
I call that ransom money.
- credit report agencies sell personal profiles for a profit without any authorization from the rightful owners
- current and planned laws subject the rightful owners to pay for a freeze if they are not presently victims of ID theft
Getting credit report agencies to pay instead of being paid would indeed be quite a revolution. Yet economic activity would rather be enhanced.
Take credit reporting. Credit report agencies would be in a good position to help me sell my profile on my behalf as a publisher services an author. For transactions I wish to close, I would certainly consent to what amounts to a third party recommendation. But no one could sneak on my records unaware.
- (*). Doctor in India Jailed for Telling Sex of a Fetus, by Amelia Gentelman (International Herald Tribune) - March 29, 2006
- (**) The Quest for Privacy Can Make Us Thieves, by Robert Klitzman, M.D. (New York Times) - May 9, 2006
- (1) Into view: how health insurers are homing in on drug data, by Christopher Bowe (Financial Times) - May 2006
- (2) Baseball Is a Game of Numbers But Whose Numbers Are They?, by Alan Schwarz (New York Times) - May, 2006
- (3) Scan This Book, by Kevin Kelly (New York Times) - May 2006
- (4) Security chief claims phone spying lawful, by Demetri Sevastopoulo (Financial Times) - May 2006
- (5) Ruling on right to medicines gets to the heart of American culture, by Christopher Bowe (Financial Times) - May 2006
November 15, 2007:
....... Major League Baseball lost its lawsuit against CBC in a fedearl appeals court, courtesy of Patti Waldmeir
....... Protect the facts that feed the fantasy, by Patti Waldmeir (Financial Times) - October 23, 2007