Socialdepartementet har tillsatt en utredning för att avgöra om polisen ska kunna konfiskera de vävnadsbanker som finns i forskningssyfte.Sedan 1975 har blodprover tagits på alla nyfödda barn (såvida föräldrarna inte begärt att få avstå) för att upptäcka vissa genetiska sjukdomar och behandla dem tidigt, i synnerhet phenyl ketonuri. Inte långt efter att systemet dragits igång ville forskare ta del av proverna, och man började lagra dessa i forskningssyfte. Således vill har vi idag en biobank innehållande identifierbara vävnadsprover tillhörande en dryg tredjedel av befolkningen.
Denna ändamålsglidning utgör ett omfattande löftesbrott gentemot de föräldrar som tillfrågades om blodprover vid barnens födsel. Det föräldrarna gick med på var kontroll av genetiska sjukdomar, och sedermera hjälp till medicinsk forskning. Hade istället föräldrarna fått frågan "får vi ta ett blodprov på din unge, utifall att han skulle bli en brottsling" så hade man förmodligen fått ett annat svar.
Nåväl. Samtliga läsare uppmanas att gå ur PKU-registret, innan det blir olagligt (jadå, sådant planeras), och man gör det enklast genom att ringa Karolinska Institutet på telefonnummer 08 - 585 827 90, varpå man begär att få sitt prov förstört. Det du behöver är ditt eget och din mammas personnummer.
Nåväl. Samtliga läsare uppmanas att gå ur PKU-registret, innan det blir olagligt (jadå, sådant planeras), och man gör det enklast genom att ringa Karolinska Institutet på telefonnummer 08 - 585 827 90, varpå man begär att få sitt prov förstört. Det du behöver är ditt eget och din mammas personnummer.
Bloggar: Mejf.net, Hammarqvist, Projo, Opassande, Delter, Vänstervindar
Media: Dagens Medicin, SvD, Stockholms Fria, DN,
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2 kommentar:
"This separation of government from people, this widening of the gap, took place so gradually and so insensibly, each step disguised (perhaps not even intentionally) as a temporary emergency measure or associated with true patriotic allegiance or with real social purposes. And all the crises and reforms (real reforms, too) so occupied the people that they did not see the slow motion underneath, of the whole process of government growing remoter and remoter.
To live in this process is absolutely not to be able to notice it—please try to believe me—unless one has a much greater degree of political awareness, acuity, than most of us had ever had occasion to develop. Each step was so small, so inconsequential, so well explained or, on occasion, ‘regretted,’ that, unless one were detached from the whole process from the beginning, unless one understood what the whole thing was in principle, what all these ‘little measures’ that no ‘patriotic German’ could resent must some day lead to, one no more saw it developing from day to day than a farmer in his field sees the corn growing. One day it is over his head.
How is this to be avoided, among ordinary men, even highly educated ordinary men? Frankly, I do not know. I do not see, even now. Many, many times since it all happened I have pondered that pair of great maxims, Principiis obsta and Finem respice —‘Resist the beginnings’ and ‘Consider the end’ But one must foresee the end in order to resist, or even see, the beginnings. One must foresee the end clearly and certainly and how is this to be done, by ordinary men or even by extraordinary men? Things might have. And everyone counts on that might.
Uncertainty is a very important factor, and, instead of decreasing as time goes on, it grows. Outside, in the streets, in the general community, ‘everyone’ is happy. One hears no protest, and certainly sees none. You know, in France or Italy there would be slogans against the government painted on walls and fences; in Germany, outside the great cities, perhaps, there is not even this. In the university community, in your own community, you speak privately to your colleagues, some of whom certainly feel as you do; but what do they say? They say, ‘It’s not so bad’ or ‘You’re seeing things’ or ‘You’re an alarmist.
And you are an alarmist. You are saying that this must lead to this, and you can’t prove it. These are the beginnings, yes; but how do you know for sure when you don’t know the end, and how do you know, or even surmise, the end? On the one hand, your enemies, the law, the regime, the Party, intimidate you. On the other, your colleagues pooh-pooh you as pessimistic or even neurotic. You are left with your close friends, who are, naturally, people who have always thought as you have.
You have gone almost all the way yourself. Life is a continuing process, a flow, not a succession of acts and events at all. It has flowed to a new level, carrying you with it, without any effort on your part. On this new level you live, you have been living more comfortably every day, with new morals, new principles. You have accepted things you would not have accepted five years ago, a year ago, things that your father, even in Germany, could not have imagined.
Suddenly it all comes down, all at once. You see what you are, what you have done, or, more accurately, what you haven’t done (for that was all that was required of most of us: that we do nothing). You remember those early meetings of your department in the university when, if one had stood, others would have stood, perhaps, but no one stood. A small matter, a matter of hiring this man or that, and you hired this one rather than that.
You remember everything now, and your heart breaks. Too late. You are compromised beyond repair.
They Thought They Were Free
The Germans, 1933-45
by Milton Mayer
http://www.press.uchicago.edu/Misc/Chicago/511928.html
Ett sådant andrahandsbruk av PKU-registret kommer förmodligen att få fler föräldrar att neka registrering av sina nyfödda.
Kanske kan polisen fånga fler brottslingar på det här sättet, men hur många sjuka barn kommer man att missa? Hur många sjukdomar som inte upptäcks förrän det är för sent är varje brottsling värd?
Läs mer om integritet och andrahandsbruk av personlig information på min blogg.