scholarly journals The Andalusian Registry of Donors for Biomedical Research: Five Years of History

BioTech ◽  
2021 ◽  
Vol 10 (1) ◽  
pp. 6
Author(s):  
Rocío Aguilar-Quesada ◽  
Inés Aroca-Siendones ◽  
Leticia de la Torre ◽  
Sonia Panadero-Fajardo ◽  
Juan David Rejón ◽  
...  
Keyword(s):  
Biomedical Research ◽  
Biological Samples ◽  
Public Health System ◽  
Clinical Information ◽  
Research Process ◽  
Legal Aspects ◽  
Human Origin ◽  
Additional Advantage ◽  
Preanalytical Phase ◽  
Societal Actors

The mission of the Andalusian Public Health System Biobank is to offer the best options for biological samples of human origin and associated clinical information, protecting the rights of citizens who donate their samples for research. Since the Andalusian Biobank provides high-quality biological samples of all types in a specified format, adapting the preanalytical phase according to the requirements of the research, prospective collection and distribution of samples are being prioritized in order to contribute to the sustainability of the Biobank. The Andalusian Registry of Donors for Biomedical Research is a tool for the recruitment of donors and the prospective collection of samples. Its operation is based on the informed consent of donors for their incorporation into the Registry and contact with possible donors under request from specific projects. An additional advantage of this unique initiative is to ensure that societal actors work together throughout the entire research process, establishing alliances with patient associations and groups to develop joint actions and promote biomedical research. Here, we describe the creation, ethical–legal aspects, management and results of the Andalusian Registry of Donors for Biomedical Research after five years of operation.

scholarly journals Legal aspects of biobanking HBS for scientific purposes in Poland

2019 ◽  
pp. 165-184
Author(s):  
Dorota Krekora-Zając
Keyword(s):  
Higher Education ◽  
Human Rights ◽  
Biomedical Research ◽  
Biological Samples ◽  
Legal Regulation ◽  
Legal Aspects ◽  
Legal Issues ◽  
European Law ◽  
Personal Rights ◽  
Principles And Standards

Legal issues related to the biobanking of human biological samples are one of the extremely important areas of European law. Biobanks created in Poland as well as the Polish Biobank Network created under the auspices of the Ministry of Science and Higher Education have become a catalyst for the search for solutions and the basis of rights for the functioning of biobanks in Poland as well as the protection of donor rights. Undoubtedly, the lack of legal regulation of biobanks and biomedical research on human biological samples could become a significant problem limiting the development of biobanking and conducting scientific research in Poland. The research attempts to show how representatives of the doctrine of law, bioethics and sociologists have interpreted the principles and standards of biobank operation in Poland from basic human rights, constitutional norms and personal rights.

Laboratory Specimens and Genetic Privacy: Evolution of Legal Theory

2013 ◽  
Vol 41 (S1) ◽  
pp. 65-68 ◽  
Author(s):  
Michelle Huckaby Lewis
Keyword(s):  
Biomedical Research ◽  
Biological Samples ◽  
Biological Tissue ◽  
Genetic Information ◽  
Legal Theory ◽  
Genetic Privacy ◽  
Tissue Samples

Human biological tissue samples are an invaluable resource for biomedical research designed to find causes of diseases and their treatments. Controversy has arisen, however, when research has been conducted with laboratory specimens either without the consent of the source of the specimen or when the research conducted with the specimen has expanded beyond the scope of the original consent agreement. Moreover, disputes have arisen regarding which party, the researcher or the source of the specimen, has control over who may use the specimens and for what purposes. The purposes of this article are: (1) to summarize the most important litigation regarding the use of laboratory specimens, and (2) to demonstrate how legal theory regarding control of laboratory specimens has evolved from arguments based upon property interests in biological samples to claims that the origins of laboratory specimens have privacy interests in their genetic information that should be protected.

scholarly journals Consent for the use of human biological samples for biomedical research: a mixed methods study exploring the UK public's preferences

BMJ Open ◽  
2013 ◽  
Vol 3 (8) ◽  
pp. e003022 ◽  
Author(s):  
Celine Lewis ◽  
Margaret Clotworthy ◽  
Shona Hilton ◽  
Caroline Magee ◽  
Mark J Robertson ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Biomedical Research ◽  
Biological Samples ◽  
Mixed Methods Study ◽  
The Uk

scholarly journals Let’s do better: public representations of COVID-19 science

FACETS ◽  
2021 ◽  
Vol 6 (1) ◽  
pp. 403-423
Author(s):  
Timothy Caulfield ◽  
Tania Bubela ◽  
Jonathan Kimmelman ◽  
Vardit Ravitsky
Keyword(s):  
Biomedical Research ◽  
Public Trust ◽  
Research Process ◽  
Research Community ◽  
Public Communication ◽  
The Public ◽  
Research Communities ◽  
Key Issues ◽  
Bad Data

COVID science is being both done and circulated at a furious pace. While it is inspiring to see the research community responding so vigorously to the pandemic crisis, all this activity has also created a churning sea of bad data, conflicting results, and exaggerated headlines. With representations of science becoming increasingly polarized, twisted, and hyped, there is growing concern that the relevant science is being represented to the public in a manner that may cause confusion, inappropriate expectations, and the erosion of public trust. Here we explore some of the key issues associated with the representations of science in the context of the COVID-19 pandemic. Many of these issues are not new. But the COVID-19 pandemic has placed a spotlight on the biomedical research process and amplified the adverse ramifications of poor public communication. We need to do better. As such, we conclude with 10 recommendations aimed at key actors involved in the communication of COVID-19 science, including government, funders, universities, publishers, media, and the research communities.

scholarly journals Tell us how to engage you! Asking polar stakeholders about their engagement preferences

Polar Record ◽  
2019 ◽  
Vol 55 (4) ◽  
pp. 245-250 ◽  
Author(s):  
Kristina C. Baer ◽  
Kirsi Latola ◽  
Annette J. M. Scheepstra
Keyword(s):  
Research Process ◽  
Problem Definition ◽  
Polar Regions ◽  
Research Projects ◽  
Societal Actors ◽  
Meaningful Engagement ◽  
Polar Science ◽  
Set Up ◽  
Additional Support ◽  
Dissemination Of Results

AbstractThe changes the polar regions face are too complex to be tackled by single scientific disciplines and in isolation from societal actors. Therefore, the call for polar research projects that engage with stakeholders outside academia increases. The ideal set-up of these projects is envisioned as an inclusive and action-oriented process that brings scientists and stakeholders together to identify pressing issues of societal and scientific relevance and to develop research projects that produce practical outcomes. However, working across disciplines and knowledge systems can be challenging. To better understand stakeholders’ motivation for engaging in polar science projects, to learn what stages of a project they are interested in and what their preferred modes of engagement are, stakeholders were surveyed as part of the EU-funded project EU-PolarNet. The results suggest that while most academic survey participants are eager to participate from problem definition to dissemination of results, most non-academic survey participants preferred interaction at the stages when results were disseminated and used for informed decision-making. The survey results have their limitations, yet they provide a basis for important future approaches to stakeholder engagement in polar research projects. They show that stakeholders prefer to engage in different stages of a research project depending on their specific needs and interests, while also acknowledging that additional support may be required to enable meaningful engagement throughout the research process.

scholarly journals Let’s Do Better: Public Representations of COVID-19 Science

2020 ◽  
Author(s):  
AISDL
Keyword(s):  
Biomedical Research ◽  
Public Trust ◽  
Research Process ◽  
Research Community ◽  
Public Communication ◽  
The Public ◽  
Research Communities ◽  
Key Issues ◽  
Bad Data

COVID science is being both done and circulated at a furious pace. While it is inspiring to see the research community responding so vigorously to the pandemic crisis, all this activity has also created a churning sea of bad data, conflicting results, and exaggerated headlines. With representations of science becoming increasingly polarized, twisted and hyped, there is growing concern that the relevant science is being represented to the public in a manner that may cause confusion, inappropriate expectations, and the erosion of public trust. Here we explore some of the key issues associated with the representations of science in the context of the COVID-19 pandemic. Many of these issues are not new. But the COVID-19 pandemic has placed a spotlight on the biomedical research process and amplified the adverse ramifications of poor public communication. We need to do better. As such, we conclude with ten recommendations aimed at key actors involved in the communication of COVID-19 science, including government, funders, universities, publishers, media and the research communities.

Dr. Nathan's Assumptions Attacked

PEDIATRICS ◽  
1974 ◽  
Vol 54 (2) ◽  
pp. 251-251
Author(s):  
Ayrum L. Katcher
Keyword(s):  
Health Care ◽  
Health Services ◽  
Biomedical Research ◽  
Delivery Of Health Care ◽  
Research Process ◽  
Research Area ◽  
Scientific Methods ◽  
Rational Application ◽  
Delivery Of Health Services

David G. Nathan's commentary (Pediatrics, 52:768, 1973) on problems of delivery of health care suggests that the rational application of scientific methods which have been so successful in the biomedical research area to the problems of the delivery of health services to our population, will produce comparable achievements in this new arena. Nathan may well be correct in his faith in the research process. However, he also seems to believe that persons engaged in research possess talent ("the cream") which is equipotential in all areas.

The Crime of Identity Theft as an Aftermath of the Development of Modern Technologies – Legal and Criminological Aspects of the Phenomenon in Poland

2019 ◽  
Vol 57 (1-2) ◽  
pp. 138-171
Author(s):  
Aleksandra Stachelska
Keyword(s):  
Rapid Development ◽  
Identity Theft ◽  
Research Process ◽  
Legal Aspects ◽  
Criminal Code ◽  
District Court ◽  
Police Statistics ◽  
The World ◽  
Judicial Proceedings ◽  
Modern Technologies

AbstractThe problem of identity theft is current all over the world. Nowadays we can even observe a tendency for an increasing occurrence of this kind of behaviour. The rapid development of new communication tools and the Internet has made it easier to commit a crime of identity theft than ever before. Despite this seemingly obvious trend in the world, in Poland since 2011, when this phenomenon was criminalized, convictions for identity theft are still one of the rarest situations. Identity theft as a proportion of general identified offences in 2017, according to Police statistics, was only .30%. The paper will present selected legal aspects of identity theft from the Polish Criminal Code, as well as criminological analysis of the phenomenon in Poland. The results of research on identity theft conducted in the District Court in Białystok on court files that ended in a final court judgment covering the years 2011–2016 will also be presented. In the course of the research process, seven cases were found and examined. The analysis was enabled by using a questionnaire, which included forty-nine questions grouped into categories, i.e. characteristics of the perpetrator of the crime, characteristics of the victim, description of the committed act, as well as the course of the pre-trial and judicial proceedings. In the paper, an attempt will be made to find an answer to the question of why the dark number of identity theft crimes in Poland is still great, and this will help characterize identity theft in the area of Białystok.

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