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Opinion 13: 'Patient files should be stored longer’

Biobanks contribute significantly to medical research, but collaboration between biobanks could yield even more useful information, particularly with regard to diseases that can be caused by many factors, such as cancer, asthma and cardiovascular diseases. That is what Dirkje Postma, Academy Professor at the University of Groningen and the University Medical Center Groningen thinks. Postma also advocates a longer storage period for patient files.

 

A biobank is a database of body material collected specifically for scientific purposes or treatment, linked to information about the people from whom the material originated. Postma: 'Examples include breast cancer biopsies for diagnostics, but also heel prick samples from babies or DNA that has been collected for a study.' The biobanks at hospitals and institutes in the Netherlands are very important for medical research, Postma explains. ‘Stored body material can help us to understand the origins of diseases and to predict more accurately whether a certain treatment will be successful and what the prognosis for a certain disease is. As an example, Postma points out the information yielded by research into breast cancer tissue. 'Researchers have identified a certain gene expression profile to which the treatment can be geared. We would never have discovered this if we had thrown away material or patient files.’

 

Gold mines

Biobanks could, however, offer a much greater wealth of information if they worked together more. ‘The Dutch biobanks are gold mines, but we’re not mining the gold yet.’ Diseases such as cancer, cardiovascular diseases and asthma are caused by interactions between various genes and environmental factors. ‘These factors can only be mapped on the basis of lots of data: data on changes in our genetic background, on environmental factors and on patient characteristics. That is why we should link up the information in the various biobanks.’ Postma, who as chair of a KNAW Foresight Committee presented a report on multifactor diseases in the genomics era last year, advocates linking existing biobanks and setting up general biobanks with a specific research question, storing information and material of large groups of people.

Extending the storage period

Postma also thinks that the current fifteen-year storage period for patient files should be extended to 100 years after the patient’s birth. ‘Body material can be stored longer, but this is useless if there’s no patient file to show whose material it is.’ A longer storage period is vital, for example, for studying the long-term effects of medicines. ‘What if a certain medicine that is used when you’re young causes Alzheimer’s at the age of seventy. You would never discover this if you throw the files away after fifteen years.'

 

Ensuring privacy

Postma emphasizes that patient privacy must be ensured. ‘This can be arranged, for example, by hiring a specialized third party to link the patient files to body material rather than letting researchers do this. That will prevent sensitive information from falling into the hands of interested parties such as insurance companies.’ She fears that the Control over Body Materials Act, which is currently being drawn up, may hinder biobank research. ‘We currently use a “no objection” system, where people can notify us if they do not want their material to be used in research. It is perfectly possible that under the new act we will have to ask the patient for permission. That would be a nuisance, since this would mean constantly having to bother patients, or their relatives if they have died.’

 

Curriculum Vitae

Prof. Dirkje Postma (Nij Beets, 1951) studied Medicine in Groningen. She gained her PhD in 1984 with a thesis entitled'Reversibility of chronic airflow obstruction'. She was appointed professor (endowed chair) in 1993, followed by an appointment as ordinary professor. In 2000, Postma was awarded the prestigious NWO/Spinoza Prize for her innovative research in the field of asthma and COPD. She was appointed Academy Professor by the KNAW in mid March ( click here for press release and photographs ). /EvL 

 

Notes for the press

Contact person: Joost Wessels, Public Affairs Depatrment, UMCG, tel. (050) 361 4464 or (050) 361 2200, e-mail: j.r.l.wessels@bvl.umcg.nl

Last modified:15 September 2017 3.10 p.m.
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