scholarly journals Opportunities and Risks for Research Biobanks in the COVID-19 Era and Beyond

2020 ◽  
Vol 18 (6) ◽  
pp. 503-510
Author(s):  
Daniel Simeon-Dubach ◽  
Marianne K. Henderson
Keyword(s):  
Research Biobanks

scholarly journals Returning a Research Participant's Genomic Results to Relatives: Perspectives from Managers of Two Distinct Research Biobanks

2015 ◽  
Vol 43 (3) ◽  
pp. 523-528
Author(s):  
Gloria M. Petersen ◽  
Brian Van Ness
Keyword(s):  
Human Subjects ◽  
Genomic Data ◽  
Clinical Information ◽  
Individual Level ◽  
The Public ◽  
Geographically Dispersed ◽  
Public Sharing ◽  
Genome Consortium ◽  
Research Biobanks ◽  
Access To Data

Given the nature of scientific inquiry, biomedical and genomic researchers have forged innumerable ways to advance our understanding of human disease. In many cases, research requires the involvement of human subjects, and in a subset of these studies, the researcher may collect data and biospecimens from many participants, and even serially collect additional materials over time and across a number of geographically dispersed centers. The organized data and biospecimens are collectively known as research biobanks. Researchers have an obligation to disseminate findings from their research through publications and presentations to other professionals, and when possible, to the public. Sharing genomic data is increasingly being mandated; access to data can be obtained through collaborative or state-funded entities. For example, the database of Genotypes and Phenotypes (dbGAP) and the International Cancer Genome Consortium will grant approved research applicants access to de-identified individual level genomic data with accompanying demographic/clinical information.

Protecting Genetic Privacy in Biobanking through Data Protection Law

2021 ◽  
Author(s):  
Dara Hallinan
Keyword(s):  
Data Protection ◽  
Critical Infrastructure ◽  
Legal Framework ◽  
Privacy Rights ◽  
Genetic Privacy ◽  
General Data Protection Regulation ◽  
General Data ◽  
Research Biobanks ◽  
The Subject ◽  
Data Protection Law

Biobanks are critical infrastructure for medical research. Biobanks, however, are also the subject of considerable ethical and legal uncertainty. Given that biobanks process large quantities of genomic data, questions have emerged as to how genetic privacy should be protected. What types of genetic privacy rights and rights holders should be protected and to what extent? Since 25 May 2018, the General Data Protection Regulation (GDPR) has applied and now occupies a key position in the European legal framework for the regulation of biobanking. This book takes an in-depth look at the function, problems, and opportunities presented by European data protection law under the GDPR as a framework for the protection of genetic privacy in biobanking. It argues that the substantive framework presented by the GDPR already offers an admirable baseline level of protection for the range of genetic privacy rights engaged by biobanking. The book further contends that while numerous problems with this standard of protection are indeed identifiable, the GDPR offers the flexibility to accommodate solutions to these problems, as well as the procedural mechanisms to realise these solutions.

scholarly journals Research biobanks: A two-faced future

2018 ◽  
Vol 114 (11/12) ◽  
Author(s):  
Marco Capocasa ◽  
Valentina Dominici ◽  
Fabrizio Rufo
Keyword(s):  
Research Biobanks

scholarly journals Public awareness of and attitudes towards research biobanks in Latvia

2020 ◽  
Vol 21 (1) ◽  
Author(s):  
S. Mezinska ◽  
J. Kaleja ◽  
I. Mileiko ◽  
D. Santare ◽  
V. Rovite ◽  
...  
Keyword(s):  
Public Awareness ◽  
Research Biobanks

A Proposed Schema for Classifying Human Research Biobanks

2011 ◽  
Vol 9 (4) ◽  
pp. 327-333 ◽  
Author(s):  
Peter H. Watson ◽  
Rebecca O. Barnes
Keyword(s):  
Human Research ◽  
Research Biobanks

scholarly journals Informed Consent in the Newly Established Biobank

2019 ◽  
Vol 16 (20) ◽  
pp. 3943
Author(s):  
Judita Kinkorová ◽  
Ondřej Topolčan ◽  
Radek Kučera
Keyword(s):  
Informed Consent ◽  
Social Issues ◽  
Health Care Systems ◽  
Future Research ◽  
Consent Forms ◽  
Great Progress ◽  
Care Systems ◽  
Research Biobanks ◽  
International Laws ◽  
Associated Data

Informed consent is an important document for every existing biobank or repository to obtain, store and use human biospecimens and associated data and information for current and future research. Biobanks have undergone great progress worldwide during the last three decades and have become an integral part of personalized medicine and health care systems and due to new scientific and social questions to be solved. Ethical, legal and social issues (ELSI) guarantee safe sample and data management, and informed consent is one of the key ELSI documents. The form and the consent given in biobank informed consent forms differs between biobank-related institutions, national biobanks, between EU states, and to find the optimal informed consent requires one to fulfil national and international laws and regulations. The Biobank in Pilsen, Czech Republic was officially opened on April the 20th 2017 as a hospital-integrated biobank, and the informed consent was one of the essential documents that had to be ready prior the opening. The process of formulating informed consent corresponding with institutional, national, and international rules and laws to share the experience, to present the challenges, and to demonstrate the national dissimilarity are tasks of the article.

Sign in / Sign up

Export Citation Format

Share Document