Tag Archives: Personal data

Abortions, sex changes, genetic defects

I offer you two thoughts from two different sites.

First – 21st century data in the UK: “A patient will not be entitled to refuse to make their personal data available to the [NHS] Spine [data systems]. Data about all patient events may be routinely communicated to the Spine without the consent of the patient. … The citizen has no legal right to stipulate what will and will not be recorded … nor where those records will be held.”

And secondly – 20th century data in Germany: “Only after Jews were identified — a massive and complex task that Hitler wanted done immediately — could they be targeted for efficient asset confiscation, ghettoization, deportation, enslaved labor, and, ultimately, annihilation. It was a cross-tabulation and organizational challenge so monumental, it called for a computer. Of course, in the 1930s no computer existed. But … punch card technology did exist. … [and] Hitler was able to automate his persecution of the Jews … from the identification of the Jews in censuses, registrations, and ancestral tracing programs to the running of railroads and organizing of concentration camp slave labor.”

The problem of course is not with data, per se. NHS staff are a pretty benign bunch. The problem comes when people with strong convictions have relatively friction-free access to data, and it is compounded when data becomes more enduring.

In this world of increasing fundamentalism, I am not comfortable that the health service can record abortions, gender re-assignments, genetic abnormalities, and other politically, socially or financially sensitive information, that they can record it in ways that mean that the data is pervasive and enduring, and that they can record it against our will.