Martine Corrette Ploem

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Many current paediatric studies concern relationships between genes and environment and discuss aetiology, treatment and prevention of Mendelian and multifactorial diseases. Many of these studies depend on collection and long-term storage of data and biological material from affected children in biobanks. Stored material is a source of personal information(More)
The use of 'next-generation' genetic sequencing technology that allows the sequencing of large parts, or even the entirety, of a patient's genome is advancing rapidly in the UK and around the world. This is set to greatly increase the level of health information that will be of relevance to relatives and the latest medical guidance advises that there is a(More)
BACKGROUND Several countries are implementing a national electronic patient record (n-EPR). Despite the assumed positive effects of n-EPRs on the efficiency, continuity, safety and quality of care, their overall adoption remains low and meets resistance from involved parties. The implementation of the Dutch n-EPR also raised considerable controversy, which(More)
According to the Declaration of Helsinki, participation of human subjects in medical research is only acceptable if subjects have given their consent. But in child abuse and neglect, many studies use a design in which subjects do not actively participate. Data in these studies are gathered from sources such as medical records or Child Protective Services.(More)
With the introduction of oocyte vitrification, a special form of intergenerational intrafamilial medically assisted reproduction (IMAR) has now become feasible: fertility preservation for mother-to-daughter oocyte donation (FPMDD). For girls diagnosed with premature ovarian insufficiency (POI), banking of their mothers' oocytes can preserve the option of(More)
Large sets of data and human specimens, such as blood, tumour tissue and DNA, are deposited in biobanks for research purposes, preferably for long periods of time and with broadly defined research aims. Our research focuses on the retention of data and biological materials obtained from children. However important such paediatric biobanks may be, the(More)
This paper focuses on the processing of medical data for scientific research and the protection of privacy. Attention will be given to the collection, storage and use of medical data for research. First, the international framework, as provided by the Council of Europe's Convention for the protection of individuals with regard to automatic processing of(More)