My own feeling would be not to go along with the project in its current form.
If the data are neatly kept in registers it's clearly the sort of structured data set, in which individuals would readily be findable, to which the Data Protection Act applies. DP only applies to living persons of course but you certainly can't be sure that all the individuals are dead (my grandmother, for example, is comfortably of an age to feature in these records and still going strong). Indeed, those most likely to be alive still are perhaps those relating to whom the information would be most sensitive (i.e. those who were youngest at the time: teenage and/or pre-marital pregnancies). The only way to be sure that you're not infringing the rights of a living individual is to shut the material for an appropriate time bracket (we use 100 years from record creation).
I can see that there could be scientific research value in the material and if it were thoroughly anonymised that would be one way of unlocking that value without infringing individuals' DP rights; but it sounds as though the project is actually interested in individuals, which I don't think is workable under the law. Another thing that troubles me is that it sounds as though the research is being carried out by a 3rd party rather than by the health body that collected the information or by its successors, and distributing this type of information to an outside organisation also goes against the aims of DP.
Certainly our data protection policy wouldn't allow this project as it stands. I'd be interested in other people's views.
Chris Hilton
Dr. Christopher Hilton
Senior Archivist, Department of Archives and Manuscripts
Wellcome Library for the History & Understanding of Medicine
The Wellcome Trust
183 Euston Road
LONDON NW1 2BE
Tel.: (+44) 020 7611 8481
The Wellcome Trust is a registered charity, no. 210183.
Its sole Trustee is The Wellcome Trust Limited, a company
registered in England, no. 2711000, whose registered office
is 183 Euston Road, London NW1 2BE.
Date: Mon, 18 Nov 2002 12:32:55 +0000
From: Sylvia Thomas <[log in to unmask]>
Subject: Medical research and Data Protection
West Yorkshire Archive Service has been asked to provide copies of
pregnancy registers for the Borough of Huddersfield 1916-1932 for a
university research project which aims to study changes in fertility and
mortality in the first half of the twentieth century, and to clarify the
link between childhood conditions and subsequent current adult illnesses.
The records give details of all the pregnancies and resulting mortality for
women living in Huddersfield in this period, as well as sometimes yielding
information on medical topics such as the pelvic size of pregnant women and
the birth weight of their children.
The researcher's intention is to computerise these records and to produce a
CD-ROM of the information.
We would value advice on how to respond to this request, in view of the
requirements of the Data Protection Act. We cannot readily anonymise the
information and, in any case, it seems that there may be a wish to link
information to current patients. It would be quite possible for a number
of people still to be alive who were pregnant in the years up to 1932.
What do you think?
Sylvia Thomas
County Archivist
West Yorkshire Archive Service
Registry of Deeds, Newstead Road
Wakefield
WF1 2DE
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