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The Swedish Personal Identity Number: Possibilities and Pitfalls in Healthcare and Medical Research

Swedish health care and national health registers are dependent on the presence of a unique identifier. This paper describes the Swedish personal identity number (PIN) and explores ethical issues of its use in medical research. A ten-digit-PIN is maintained by the National Tax Board for all individu... Full description

Journal Title: European Journal of Epidemiology 2009-01-01, Vol.24 (11), p.659-667
Main Author: Ludvigsson, Jonas F
Other Authors: Otterblad-Olausson, Petra , Pettersson, Birgitta U , Ekbom, Anders
Format: Electronic Article Electronic Article
Language: English
Subjects:
Pin
Publisher: Dordrecht: Springer
ID: ISSN: 0393-2990
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recordid: cdi_swepub_primary_oai_prod_swepub_kib_ki_se_119543761
title: The Swedish Personal Identity Number: Possibilities and Pitfalls in Healthcare and Medical Research
format: Article
creator:
  • Ludvigsson, Jonas F
  • Otterblad-Olausson, Petra
  • Pettersson, Birgitta U
  • Ekbom, Anders
subjects:
  • Biological and medical sciences
  • Birthdays
  • Cardiology
  • Celiac disease
  • Civil registration number
  • Coordination numbers
  • Electronic Health Records - ethics
  • Epidemiology
  • Ethics, Research
  • Federal taxes
  • General aspects
  • Health care
  • Health care industry
  • Humans
  • Identification
  • Infectious Diseases
  • male genital diseases
  • Medical research
  • Medical sciences
  • Medicin och hälsovetenskap
  • Medicine
  • Medicine & Public Health
  • Medicine, Experimental
  • Methods
  • Miscellaneous
  • Nervous system diseases
  • Neurodegenerative diseases
  • Oncology
  • Patient Identification Systems - ethics
  • Patient Identification Systems - legislation & jurisprudence
  • Patient Rights - ethics
  • Personal identity
  • Personal identity number
  • Pin
  • Population
  • Public Health
  • Public health. Hygiene
  • Public health. Hygiene-occupational medicine
  • Registries
  • Review
  • Sweden
  • Thyroid diseases
  • urologic
ispartof: European Journal of Epidemiology, 2009-01-01, Vol.24 (11), p.659-667
description: Swedish health care and national health registers are dependent on the presence of a unique identifier. This paper describes the Swedish personal identity number (PIN) and explores ethical issues of its use in medical research. A ten-digit-PIN is maintained by the National Tax Board for all individuals that have resided in Sweden since 1947. Until January 2008, an estimated 75,638 individuals have changed PIN. The most common reasons for change of PIN are incorrect recording of date of birth or sex among immigrants or newborns. Although uncommon, change of sex always leads to change of PIN since the PIN is sex-specific. The most common reasons for re-use of PIN (n = 15,887), is when immigrants are assigned a PIN that has previously been assigned to someone else. This is sometimes necessary since there is a shortage of certain PIN combinations referring to dates of birth in the 1950s and 1960s. Several ethical issues can be raised pro and con the use of PIN in medical research. The Swedish PIN is a useful tool for linkages between medical registers and allows for virtually 100% coverage of the Swedish health care system. We suggest that matching of registers through PIN and matching of national health registers without the explicit approval of the individual patient is to the benefit for both the individual patient and for society.
language: eng
source:
identifier: ISSN: 0393-2990
fulltext: no_fulltext
issn:
  • 0393-2990
  • 1573-7284
  • 1573-7284
url: Link


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creatorcontribLudvigsson, Jonas F ; Otterblad-Olausson, Petra ; Pettersson, Birgitta U ; Ekbom, Anders
descriptionSwedish health care and national health registers are dependent on the presence of a unique identifier. This paper describes the Swedish personal identity number (PIN) and explores ethical issues of its use in medical research. A ten-digit-PIN is maintained by the National Tax Board for all individuals that have resided in Sweden since 1947. Until January 2008, an estimated 75,638 individuals have changed PIN. The most common reasons for change of PIN are incorrect recording of date of birth or sex among immigrants or newborns. Although uncommon, change of sex always leads to change of PIN since the PIN is sex-specific. The most common reasons for re-use of PIN (n = 15,887), is when immigrants are assigned a PIN that has previously been assigned to someone else. This is sometimes necessary since there is a shortage of certain PIN combinations referring to dates of birth in the 1950s and 1960s. Several ethical issues can be raised pro and con the use of PIN in medical research. The Swedish PIN is a useful tool for linkages between medical registers and allows for virtually 100% coverage of the Swedish health care system. We suggest that matching of registers through PIN and matching of national health registers without the explicit approval of the individual patient is to the benefit for both the individual patient and for society.
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publisherDordrecht: Springer
subjectBiological and medical sciences ; Birthdays ; Cardiology ; Celiac disease ; Civil registration number ; Coordination numbers ; Electronic Health Records - ethics ; Epidemiology ; Ethics, Research ; Federal taxes ; General aspects ; Health care ; Health care industry ; Humans ; Identification ; Infectious Diseases ; male genital diseases ; Medical research ; Medical sciences ; Medicin och hälsovetenskap ; Medicine ; Medicine & Public Health ; Medicine, Experimental ; Methods ; Miscellaneous ; Nervous system diseases ; Neurodegenerative diseases ; Oncology ; Patient Identification Systems - ethics ; Patient Identification Systems - legislation & jurisprudence ; Patient Rights - ethics ; Personal identity ; Personal identity number ; Pin ; Population ; Public Health ; Public health. Hygiene ; Public health. Hygiene-occupational medicine ; Registries ; Review ; Sweden ; Thyroid diseases ; urologic
ispartofEuropean Journal of Epidemiology, 2009-01-01, Vol.24 (11), p.659-667
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descriptionSwedish health care and national health registers are dependent on the presence of a unique identifier. This paper describes the Swedish personal identity number (PIN) and explores ethical issues of its use in medical research. A ten-digit-PIN is maintained by the National Tax Board for all individuals that have resided in Sweden since 1947. Until January 2008, an estimated 75,638 individuals have changed PIN. The most common reasons for change of PIN are incorrect recording of date of birth or sex among immigrants or newborns. Although uncommon, change of sex always leads to change of PIN since the PIN is sex-specific. The most common reasons for re-use of PIN (n = 15,887), is when immigrants are assigned a PIN that has previously been assigned to someone else. This is sometimes necessary since there is a shortage of certain PIN combinations referring to dates of birth in the 1950s and 1960s. Several ethical issues can be raised pro and con the use of PIN in medical research. The Swedish PIN is a useful tool for linkages between medical registers and allows for virtually 100% coverage of the Swedish health care system. We suggest that matching of registers through PIN and matching of national health registers without the explicit approval of the individual patient is to the benefit for both the individual patient and for society.
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10General aspects
11Health care
12Health care industry
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14Identification
15Infectious Diseases
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20Medicine
21Medicine & Public Health
22Medicine, Experimental
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27Oncology
28Patient Identification Systems - ethics
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30Patient Rights - ethics
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35Public Health
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authorLudvigsson, Jonas F ; Otterblad-Olausson, Petra ; Pettersson, Birgitta U ; Ekbom, Anders
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abstractSwedish health care and national health registers are dependent on the presence of a unique identifier. This paper describes the Swedish personal identity number (PIN) and explores ethical issues of its use in medical research. A ten-digit-PIN is maintained by the National Tax Board for all individuals that have resided in Sweden since 1947. Until January 2008, an estimated 75,638 individuals have changed PIN. The most common reasons for change of PIN are incorrect recording of date of birth or sex among immigrants or newborns. Although uncommon, change of sex always leads to change of PIN since the PIN is sex-specific. The most common reasons for re-use of PIN (n = 15,887), is when immigrants are assigned a PIN that has previously been assigned to someone else. This is sometimes necessary since there is a shortage of certain PIN combinations referring to dates of birth in the 1950s and 1960s. Several ethical issues can be raised pro and con the use of PIN in medical research. The Swedish PIN is a useful tool for linkages between medical registers and allows for virtually 100% coverage of the Swedish health care system. We suggest that matching of registers through PIN and matching of national health registers without the explicit approval of the individual patient is to the benefit for both the individual patient and for society.
copDordrecht
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pmid19504049
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