Swedish Radio disclosure shows that the Stockholm police for ten years has registered thousands of women who reported that they had been beaten and threatened. The registry contains sensitive data and offensive reviews for the women. It has also been used for research unlicensed and ethics approval. The reports have been presented in scientific journals.
Science Radio Ulrika Björkstén comment.
Henrik Belfrage, Professor of Criminology, co-authored scientific articles that has been using the registry. He believes that it is more about quality assurance, and that no ethical evaluation is needed.
Ulrika Björkstén, what to think about this? Quality assurance, says researcher Henrik Belfrage – no need for ethics review then?
– Yes it is true that other rules apply quality assurance than for research, but it feels to say the least as an ethical gray area that argue that this is not research. Researchers have evaluated various checklists that are used to make risk assessments for women, and the results have thus been published in scientific journals. When I’ve talked with ethicists and lawyers about how as a researcher and institution should handle this type of research records so it’s really about three steps to go through before starting a research project, says Ulrika Björkstén.
What steps is it?
– First, you should have permission from them to graduate that their data is used in research. That’s not the case here, the women did not know they were included in a study.
– Since the research shall be approved by an ethics committee. In this case there is such an authorization from 2012, but there are thus several years of research begun and even published and ethical consent is not retroactive, so it thus does not cover up the research done in the past.
– And even if you get an approval of the ethical review is required, it is also legal to Data Inspectorate approved the use of register data. It is the institution’s responsibility to seek authorization from the Data Inspectorate. And this holds even if the registry to use, from the start state, the Swedish Radio’s examination has shown that this police file moreover do not have.
How common is research on the register, it is a big issue in the scientific community?
– The interesting is that this issue has been discussed a lot lately. Swedish authorities are good at having records and there are great opportunities for research, especially in medicine. However, because the rules say that you can only use the registry to research those included in the register given their specific consent to be included in a particular research project, you can not use the data in hindsight, if they figure out new things you want to do research on.
– This was a lot of discussion about when a major medical register-based research project was stopped by the Data Inspection few years ago. It led to set up a commission of inquiry Bengt Westerberg led and which was completed last summer. It concluded, inter alia, that there should be enough of those included in the register has given general approval to their data and, for example, medical samples used in research. The idea is that you should not have to gokänna exactly what research it will be, but keep the door open for future research ideas. So far it has solved it by making exceptions for certain medical records, but in the future we might expect a change in the law.
But this is still far from research on women in Södertörn police records?
– Yes, of course, where it has the apparently been no consent at all.
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