Software spss 21
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These biomedical cohort studies and biobanks (further referred to as biobanks) store large quantities of biological specimens as well as data extracted from questionnaires and measurements as a resource for research, while being managed by professional standards. Large-scale, centralised data repositories can be large prospective population-based cohort studies and biomedical biobanks. As a result of these new possibilities for analysing and knowledge building, the quest to advance the collection and use of data from both patients and healthy volunteers has become urgent, further increasing the efforts on exponential growth of data repository and international data-sharing or linkage projects. In addition, advances in information technology create the possibility to analyse vast amounts of genetic (genomic) data, and the potential to understand more about risk factors for developing diseases or the course of the disease. Analyses on a large-scale, centralised data repository enable researchers to understand specific characteristics and behaviour on an individual level in an unprecedented way, which can impact both research and clinical practice. To understand complex relationships in retaining health or developing disease, a large number of participants contributing large amounts of data is needed to get sufficient statistical power. In addition, it creates the opportunity to improve health care for individuals by data enhancement.
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Future research should further investigate how perceptions of harm and benefits may influence decision making on withdrawal of participation.Ĭontinuous and full participation of members of the public in data repositories in the medical field is essential for effective scientific research. In addition, our data provide initial evidence regarding how factors may relate with the probability that individuals will agree to data linkages, when controlling for their unique effects. We suggest some new directions for improving recruitment, retention and safeguarding strategies in biobanking. These findings support and nuance previous findings by highlighting the distinctiveness and complexity of decision making regarding participation in or withdrawal from data donation. Although general values and trust both played key roles in participation, potential withdrawal and willingness to permit data linkage, they were differentially associated with motives for participation and withdrawal.
Our results indicated that motives for participation and withdrawal were premised on benefits or harm to society and to the individuals themselves. These questions were explored using a sample of participants in the Dutch Lifelines biobank ( n = 2615). In addition, we analysed how these motives were related to various characteristics of the participants and their willingness to permit data linkage to their personal data for research. We investigated individuals’ motives for participating in such projects and potential reasons for their withdrawal from participation in a population-based biobank. Such efforts aim to increase the repository’s value for its uses in medical research to contribute to improve health care, especially when data linkage is permitted by participants.
Data repositories, like research biobanks, seek to optimise the number of responding participants while simultaneously attempting to increase the amount of data donated per participant.