Collecting data for quality improvement and research in Swedish healthcare, and the individual patient's right and ability to protect their privacy
Mattsson, Titti LU
(2016)
In International journal of technology policy and law
2(2/3/4).
p.160-168
- Abstract
- During the last decades, there has been continuous development of nationwide quality registries to assess healthcare and to do research in Sweden. An important background motive is the demographic transition resulting from an increasingly ageing population as one of the most important challenges of our time and a growing concern in many European countries and elsewhere. One condition for meeting this challenge in healthcare is to find more efficient ways of treatment for the elderly and persons with cognitive impairments. For such development research on these groups is necessary. To what extent, then, should research be allowed when people are permanently incapable of giving a valid consent to be included in research, statistics and... (More)
- During the last decades, there has been continuous development of nationwide quality registries to assess healthcare and to do research in Sweden. An important background motive is the demographic transition resulting from an increasingly ageing population as one of the most important challenges of our time and a growing concern in many European countries and elsewhere. One condition for meeting this challenge in healthcare is to find more efficient ways of treatment for the elderly and persons with cognitive impairments. For such development research on these groups is necessary. To what extent, then, should research be allowed when people are permanently incapable of giving a valid consent to be included in research, statistics and systematic improvement studies? This paper discusses the tension between the need that also people with limited or no decision-making capacity participate in research and clinical evaluations, and the difficulty in ensuring the privacy of the incapacitated to the same degree that others enjoy. I will argue that Sweden has chosen to put the common good above the individual’s privacy, and therefore have accepted a certain weakening of the incapacitated persons’ privacy protection. (Less)
Please use this url to cite or link to this publication:
https://lup.lub.lu.se/record/8057306
- author
- Mattsson, Titti
LU
- organization
- publishing date
- 2016
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- socialrätt, demens, patientdata, beslutskapacitet, åldrande, medicinska journaler, forskning, skydd för privatlivet, kliniska utvärderingar, konfidentialitet, social welfare law, incapacited persons, quality registries, dementia, patient data, decision-making capacity, elderly, aging population, medical records, research, privacy protection, clinical evaluations, confidentiality
- in
- International journal of technology policy and law
- volume
- 2
- issue
- 2/3/4
- pages
- 160 - 168
- publisher
- Inderscience Publishers
- ISSN
- 1742-4240
- DOI
- 10.1504/IJTPL.2016.077174
- project
- Elder Law within the Norma Research Programme
- Research on decisionally incapacitated individuals. A legal study of the Act concerning the Ethical Review of Research Involving Humans, and its application
- language
- English
- LU publication?
- yes
- id
- 57cc7da2-d607-4c6e-95ea-a38c2493f1c1 (old id 8057306)
- date added to LUP
- 2016-04-04 13:50:29
- date last changed
- 2022-10-13 02:29:27
@article{57cc7da2-d607-4c6e-95ea-a38c2493f1c1,
abstract = {{During the last decades, there has been continuous development of nationwide quality registries to assess healthcare and to do research in Sweden. An important background motive is the demographic transition resulting from an increasingly ageing population as one of the most important challenges of our time and a growing concern in many European countries and elsewhere. One condition for meeting this challenge in healthcare is to find more efficient ways of treatment for the elderly and persons with cognitive impairments. For such development research on these groups is necessary. To what extent, then, should research be allowed when people are permanently incapable of giving a valid consent to be included in research, statistics and systematic improvement studies? This paper discusses the tension between the need that also people with limited or no decision-making capacity participate in research and clinical evaluations, and the difficulty in ensuring the privacy of the incapacitated to the same degree that others enjoy. I will argue that Sweden has chosen to put the common good above the individual’s privacy, and therefore have accepted a certain weakening of the incapacitated persons’ privacy protection.}},
author = {{Mattsson, Titti}},
issn = {{1742-4240}},
keywords = {{socialrätt; demens; patientdata; beslutskapacitet; åldrande; medicinska journaler; forskning; skydd för privatlivet; kliniska utvärderingar; konfidentialitet; social welfare law; incapacited persons; quality registries; dementia; patient data; decision-making capacity; elderly; aging population; medical records; research; privacy protection; clinical evaluations; confidentiality}},
language = {{eng}},
number = {{2/3/4}},
pages = {{160--168}},
publisher = {{Inderscience Publishers}},
series = {{International journal of technology policy and law}},
title = {{Collecting data for quality improvement and research in Swedish healthcare, and the individual patient's right and ability to protect their privacy}},
url = {{http://dx.doi.org/10.1504/IJTPL.2016.077174}},
doi = {{10.1504/IJTPL.2016.077174}},
volume = {{2}},
year = {{2016}},
}