Return of Results in Population Studies: How Do Participants Perceive Them?

2020 ◽  
Author(s):  
Hélène Nobile ◽  
Pascal Borry ◽  
Jennifer Moldenhauer ◽  
Manuela M Bergmann
Keyword(s):  
Population Studies ◽  
Personal Information ◽  
Population Based ◽  
Return Of Results ◽  
Ethical Question ◽  
German Studies ◽  
Structured Interviews ◽  
Biobank Research ◽  
Public Health Epidemiology

Abstract As a cornerstone of public health, epidemiology has lately undergone substantial changes enabled by, among other factors, the use of biobank infrastructures. In biobank-related research, the return of results to participants constitutes an important and complex ethical question. In this study, we qualitatively investigated how individuals perceive the results returned following their participation in cohort studies with biobanks. In our semi-structured interviews with 31 participants of two such German studies, we observed that some participants overestimate the nature of the personal information they will receive from the study. Although this misestimation does not seem to jeopardize the validity of the consent provided at recruitment, it may still represent a threat for participants’ trust in research and thus their long-term commitment, crucial for such studies. We argue that such misestimation may have ethical consequences on the principles guiding the reflection on the return of results in biobank research, i.e. autonomy, beneficence, non-maleficence and reciprocity. We suggest that shifting from the idea of directly benefiting participants through the return of research results could help focusing on benefiting society as a whole, thereby increasing research trustworthiness of population-based studies using biobanks.

The Return of Results of Deceased Research Participants

2011 ◽  
Vol 39 (4) ◽  
pp. 621-630 ◽  
Author(s):  
Anne Marie Tassé
Keyword(s):  
Population Studies ◽  
Genetic Research ◽  
Family Members ◽  
Research Participant ◽  
Return Of Results ◽  
Research Results ◽  
Research Participants ◽  
Related Family ◽  
Ethical And Legal Issues

Until the mid-20th century, biomedical research centered on the study of specific diseases, concerned with short periods of time and small groups of living research participants. However, the growth of longitudinal population studies and long-term biobanking now forces the research community to examine the possibility of the death of their research participants.The death of a research participant raises numerous ethical and legal issues, including the return of deceased individuals’ research results to related family members. As with the return of individual research results for living research participants, the question of the obligation to return a deceased person’s research results to family members has yet to be settled. This question is particularly acute in the context of genetic research since the research results from one individual may have health implications for all biological relatives.

scholarly journals Swedish Law on Personal Data in Biobank Research: Permissible But Complex

2021 ◽  
pp. 379-394
Author(s):  
Magnus Stenbeck ◽  
Sonja Eaker Fält ◽  
Jane Reichel
Keyword(s):  
Data Protection ◽  
Personal Information ◽  
Personal Data ◽  
Population Based ◽  
Public Access ◽  
Future Research ◽  
Regulatory Regime ◽  
Biobank Research ◽  
The Right ◽  
Effective Use

AbstractThis chapter describes the regulatory and organisational infrastructure of biobank research in Sweden, and how the introduction of the GDPR affects the possibilities to use biobank material in future research. The Swedish legislator has chosen a rather minimalistic approach in relation to the research exception in Article 89 GDPR and has only enacted limited general exceptions to the data protection rules. This may be partly explained by the comprehensive right to public access to official documents which gives researchers vast access to information held in registries, albeit conditioned on abiding by secrecy and confidentiality rules. The Swedish legislation implementing the GDPR includes a general exception from the data protection rules in relation to the right to access to official documents, which researchers also benefit from. However, confidentiality rules for different categories of information differ between sectors, which hinders an effective use of the registries in research. The regulatory regime for using biobank and registry data in Sweden thus involves both data protection and secrecy rules, which makes the legal landscape permissible but complex. The operationalisation of the research exception in Article 89 GDPR is analysed against this background. Special attention is given to the possibility to link personal information derived from biobanks with personal information from other data sources, including large national population based statistical registries as well as information from national clinical registers.

scholarly journals Perinatal regionalization system: efficiency analysis

2020 ◽  
Vol 65 (3) ◽  
pp. 18-24
Author(s):  
O. P. Kovtun ◽  
N. S. Davydova ◽  
R. F. Mukhametshin
Keyword(s):  
First Principles ◽  
Population Studies ◽  
Large Population ◽  
Population Based ◽  
Long Term Results ◽  
Basic Principles ◽  
The Past ◽  
Perinatal Regionalization ◽  
Bed Capacity

The first principles and fundamental elements of perinatal regionalization were formulated more than 40 years ago. Over the past years this organizational model was substantially complicated and modernized. Numerous large, population-based studies describe and analyze the effects of perinatal regionalization, propose and study the possible directions of its development. It has been proven that the bed capacity of the obstetric hospital and the flow of extremely premature newborns in the hospital largely determine the outcome of the premature newborn, morbidity, mortality, long-term results, affecting important population indicators, neonatal and infant mortality. The review summarizes the data on available population studies, outlines the basic principles of the formation and development of the perinatal regionalization system.

No relation between biomarkers at age 47–49 and aortic diameter after 14–19 years of follow-up – a population-based study

VASA ◽  
2017 ◽  
Vol 46 (4) ◽  
pp. 291-295 ◽  
Author(s):  
Soumia Taimour ◽  
Moncef Zarrouk ◽  
Jan Holst ◽  
Olle Melander ◽  
Gunar Engström ◽  
...  
Keyword(s):  
Population Based ◽  
Aortic Diameter ◽  
Aortic Dilatation ◽  
Population Based Study ◽  
Reactive Protein ◽  
Abdominal Aortic ◽  
Long Term Follow Up ◽  
Old Men

Abstract. Background: Biomarkers reflecting diverse pathophysiological pathways may play an important role in the pathogenesis of abdominal aortic aneurysm (aortic diameter ≥30 mm, AAA), levels of many biomarkers are elevated and correlated to aortic diameter among 65-year-old men undergoing ultrasound (US) screening for AAA. Probands and methods: To evaluate potential relationships between biomarkers and aortic dilatation after long-term follow-up, levels of C-reactive protein (CRP), proneurotensin (PNT), copeptin (CPT), lipoprotein-associated phospholipase 2 (Lp-PLA2), cystatin C (Cyst C), midregional proatrial natriuretic peptide (MR-proANP), and midregional proadrenomedullin (MR-proADM) were measured in 117 subjects (114 [97 %] men) aged 47–49 in a prospective population-based cohort study, and related to aortic diameter at US examination of the aorta after 14–19 years of follow-up. Results: Biomarker levels at baseline did not correlate with aortic diameter after 14–19 years of follow up (CRP [r = 0.153], PNT [r = 0.070], CPT [r = –.156], Lp-PLA2 [r = .024], Cyst C [r = –.015], MR-proANP [r = 0.014], MR-proADM [r = –.117]). Adjusting for age and smoking at baseline in a linear regression model did not reveal any significant correlations. Conclusions: Tested biomarker levels at age 47–49 were not associated with aortic diameter at ultrasound examination after 14–19 years of follow-up. If there are relationships between these biomarkers and aortic dilatation, they are not relevant until closer to AAA diagnosis.

Integration of Digital Preservation Knowledge, Skills and Competencies in the Teaching Curricula of Library and Information Studies at the University of Botswana

Mousaion ◽  
2019 ◽  
Vol 37 (1) ◽  
Author(s):  
Thatayaone Segaetsho ◽  
Julie Moloi
Keyword(s):  
Digital Preservation ◽  
Records Management ◽  
Structured Interviews ◽  
University Of Botswana ◽  
Current Trends ◽  
Teaching Content ◽  
Library And Information Studies ◽  
Information Studies ◽  
The University

In the past few decades, digital technology has found a place in the acquisition, arrangement, description, preservation, and dissemination of information. However, heritage institutions are perturbed by the challenges of digital preservation strategies particularly for education. Despite continuous investment in digital preservation, there are limited skilled professionals to equip learners with the knowledge, skills and competencies required to drive digital preservation in Botswana. Therefore, this paper investigated the knowledge, skills and competencies related to digital preservation in the teaching curricula of the Department of Library and Information Studies (DLIS) at the University of Botswana. Data collection was done through intensive structured interviews with specific educators who teach courses on digital preservation in the archives and records management stream. The study revealed that despite the fact that the educators in preservation courses are aware of current trends in digital preservation, most of them have not obtained formal degree certification specific to digital preservation. The findings further revealed that minimal digital preservation competencies are observed in the teaching curricula. A significant number of challenges observed illustrated mainly a lack of resources and limited skills in terms of practical demonstrations by educators. The curricula mostly lacked clarity on long-term and short-term digital preservation. The study recommends that DLIS and other institutions should conduct surveys or curriculum auditing on digital preservation in order to improve the teaching content. A significant number of shortcomings regarding digital preservation that could motivate further studies are also discussed under the conclusion and recommendations section of this study.

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