Broad Consent for Future Research: International Perspectives

2018 ◽  
Vol 40 (6) ◽  
pp. 7-12
Author(s):  
Mark A. Rothstein ◽  
Heather L. Harrell ◽  
Katie M. Saulnier ◽  
Edward S. Dove ◽  
Chien Te Fan ◽  
...  
Keyword(s):  
Future Research ◽  
Broad Consent ◽  
International Perspectives

scholarly journals Broad donor consent for human biobanks in Germany and Europe: a strategy to facilitate cross-border sharing and exchange of human biological materials and related data

2019 ◽  
Vol 43 (6) ◽  
pp. 291-299 ◽  
Author(s):  
Roland Jahns ◽  
Jörg Geiger ◽  
Irene Schlünder ◽  
Daniel Strech ◽  
Matthias Brumhard ◽  
...  
Keyword(s):  
Biological Samples ◽  
Biological Material ◽  
Task Force ◽  
Working Party ◽  
Future Research ◽  
Broad Consent ◽  
Research Issues ◽  
Related Data ◽  
Cross Border

Abstract Background Human biobanks are generally recognized as essential resources for effective biomedical research. All over the world biosamples and data from human subjects are collected in large biobanks. The biological material is stored long term for current and future (undetermined) research issues, which often require cross-border exchange of biosamples and related data. Content Commonly, the informed consent for research on human biospecimen is intended to cover only defined, specific research objectives. In June 2016, the biobank Task-Force of the Working Party of the German Medical Ethics Committees (WP-GMEC) updated its template for the broad use of human biological samples and related data. It complies with the current Organisation for Economic Co-operation and Development (OECD) and World Medical Association (WMA) recommendations and furnishes a framework that permits long-term storage and multi-purpose research use of human biological material and related data, including cross-border research. However, both (i) human biobanks storing and (ii) research projects requesting “broad consent” biological samples generally require an ethical approval; in addition, “broad consent” conditions should be reciprocated by making biobank processes transparent and by fostering both donor and public involvement. Outlook The broad consent template of the WP-GMEC clearly states that biological samples and data donated for medical research serve to address current and future research questions. It appears perfectly suited as a template for a Europe-wide harmonized broad consent facilitating biobank-based cross-border research.

scholarly journals Broad consent under the GDPR: an optimistic perspective on a bright future

2020 ◽  
Vol 16 (1) ◽  
Author(s):  
Dara Hallinan
Keyword(s):  
Genomic Research ◽  
Future Research ◽  
Broad Consent ◽  
Research Practice ◽  
Dominant Position ◽  
General Data Protection Regulation ◽  
The Core ◽  
General Data ◽  
Positive Outlook ◽  
The Eu

AbstractBroad consent – the act of gaining one consent for multiple potential future research projects – sits at the core of much current genomic research practice. Since the 25th May 2018, the General Data Protection Regulation (GDPR) has applied as valid law concerning genomic research in the EU and now occupies a dominant position in the legal landscape. Yet, the position of the GDPR concerning broad consent has recently been cause for concern in the genomic research community. Whilst the text of the GDPR apparently supports the practice, recent jurisprudence contains language which is decidedly less positive. This article takes an in-depth look at the situation concerning broad consent under the GDPR and – despite the understandable concern flowing from recent jurisprudence – offers a positive outlook. This positive outlook is argued from three perspectives, each of which is significant in defining the current, and ongoing, legitimacy and utility of broad consent under the GDPR: the principled, the legal technical, and the practical.

scholarly journals Broad consent for biobanks is best – provided it is also deep

2019 ◽  
Vol 20 (1) ◽  
Author(s):  
Rasmus Bjerregaard Mikkelsen ◽  
Mickey Gjerris ◽  
Gunhild Waldemar ◽  
Peter Sandøe
Keyword(s):  
Human Subjects ◽  
Ethical Review ◽  
Future Research ◽  
Broad Consent ◽  
Research Subjects ◽  
Ongoing Debate ◽  
Biobank Research ◽  
Ethical Acceptability ◽  
Meta Consent

Abstract Background As biobank research has become increasingly widespread within biomedical research, study-specific consent to each study, a model derived from research involving traditional interventions on human subjects, has for the sake of feasibility gradually given way to alternative consent models which do not require consent for every new study. Besides broad consent these models include tiered, dynamic, and meta-consent. However, critics have pointed out that it is normally not known at the time of enrolment in what ways samples deposited in a biobank may be used in future research and that, for a consent to be informed, exactly this kind of knowledge is required. Therefore, there is an ongoing debate about the ethical acceptability of going for less than study-specific consent. Main text In light of this debate we address the question of how to best protect participants against relevant risks and violations of autonomy. We apply the central aims of the informed consent process to the unique circumstances of biobank research where samples and data in many cases are stored for long periods of time and reused in subsequent studies. Thereby we are able to formulate a set of criteria focusing both on the risk of informational harm and the potential violation of participants’ values. We compare existing models of consent based on their ability to satisfy the criteria, and we find that the broad consent model offers the best level of protection for participants, although, it suffers from a few important deficiencies with regards to protection against participant value violations and long-term protection of autonomy, if it is applied without qualifications. For this reason, we propose modifications to the current broad consent model, in order to ensure that it provides protection of autonomy and participant values through strong ethical review and continuous communication. Conclusion We conclude that a modified form of broad consent is ethically superior in biobank research, not only because it is most feasible but primarily because it offers the best available protection against the hazards facing research subjects in this form of research.

National Security Intelligence

2010 ◽  
pp. 2-32 ◽  
Author(s):  
Loch K. Johnson
Keyword(s):  
National Security ◽  
Future Research ◽  
Career Experiences ◽  
Strategic Intelligence ◽  
Related Information ◽  
International Perspectives ◽  
The Subject ◽  
Research Agendas ◽  
Covert Operations ◽  
The Government

This text aims to impart an understanding of the important and relatively new discipline that focuses on the hidden side of the government. Such hidden side of the government includes secret agencies that provide security-related information to policymakers and carry out other covert operations on their behalf. The objective of this book is to provide an up-to-date assessment of the literature and findings in this field of strategic intelligence and national security intelligence study. This book seeks to map out the discipline and aim to suggest future research agendas. In this text, several nationalities, career experiences, and scholarly training are reflected, highlighting the spread of interest in this subject across many boundaries. The outcome of this mix is a volume loaded in research disciplines, findings, and agendas, with a multitude of international perspectives on the subject of national security intelligence.

Population Biology of Vector-Borne Diseases

2020 ◽  
Keyword(s):  
Population Biology ◽  
Future Research ◽  
Emerging Viruses ◽  
Vector Borne Diseases ◽  
International Perspectives ◽  
Emerging Trends ◽  
Comprehensive Survey ◽  
Vector Borne ◽  
Scientific Questions ◽  
Environmental Dependence

Population Biology of Vector-Borne Diseases is the first comprehensive survey of this rapidly developing field. The chapter topics provide an up-to-date presentation of classical concepts, reviews of emerging trends, synthesis of existing knowledge, and a prospective agenda for future research. The contributions offer authoritative and international perspectives from leading thinkers in the field. The dynamics of vector-borne diseases are far more intrinsically ecological compared with their directly transmitted equivalents. The environmental dependence of ectotherm vectors means that vector-borne pathogens are acutely sensitive to changing environmental conditions. Although perennially important vector-borne diseases such as malaria and dengue have deeply informed our understanding of vector-borne diseases, recent emerging viruses such as West Nile virus, Chikungunya virus, and Zika virus have generated new scientific questions and practical problems. The study of vector-borne disease has been a particularly rich source of ecological questions, while ecological theory has provided the conceptual tools for thinking about their evolution, transmission, and spatial extent.

scholarly journals Broad Consent for Research on Biospecimens: The Views of Actual Donors at Four U.S. Medical Centers

2018 ◽  
Vol 13 (2) ◽  
pp. 115-124 ◽  
Author(s):  
Teddy D. Warner ◽  
Carol J. Weil ◽  
Christopher Andry ◽  
Howard B. Degenholtz ◽  
Lisa Parker ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Academic Medical Centers ◽  
Tissue Donation ◽  
Future Research ◽  
Sufficient Information ◽  
Broad Consent ◽  
For Profit ◽  
Medical Centers ◽  
Academic Medical ◽  
Wide Range

Commentators are concerned that broad consent may not provide biospecimen donors with sufficient information regarding possible future research uses of their tissue. We surveyed with interviews 302 cancer patients who had recently provided broad consent at four diverse academic medical centers. The majority of donors believed that the consent form provided them with sufficient information regarding future possible uses of their biospecimens. Donors expressed very positive views regarding tissue donation in general and endorsed the use of their biospecimens in future research across a wide range of contexts. Concerns regarding future uses were limited to for-profit research and research by investigators in other countries. These results support the use of broad consent to store and use biological samples in future research.

Australian Legume Research – synthesis and future directions

2012 ◽  
Vol 63 (9) ◽  
pp. 918 ◽  
Author(s):  
J. M. Virgona ◽  
C. Harris ◽  
S. Kemp ◽  
J. Evans ◽  
R. Salmon
Keyword(s):  
Research And Development ◽  
Research Priorities ◽  
Farming Systems ◽  
Future Research ◽  
N Fixation ◽  
Pasture Legumes ◽  
International Perspectives ◽  
Development Capacity ◽  
Acid Tolerant ◽  
Pasture Legume

The Australian Legumes Symposium was the first in a planned series of regular technical symposia organised by the Australian Grasslands Association. The aim was to provide researchers with the opportunity to interact, present up-to-date reviews on topics related to pasture legume science, present results of current research and participate in planning of future research and development relevant to pasture legumes. This paper is intended to be the key output of the forum – a summary of findings and highlights from review and contributed research papers as well as identifying key research priorities for the future. In terms of the former, reviews presented at the symposium provided an overview of the development and role of pasture legumes in temperate farming systems. Closely related topics – nitrogen (N) fixation, N balance of farming systems and management of legume inoculation provided a focus on the importance of legumes in terms of N input and overall productivity. International perspectives on lucerne – its improvement and adoption provided a noticeable contrast to the apparent paucity of research into this species in Australia – despite its widespread use in temperate farming systems. In terms of content, there were many other papers delivered dealing with a wide diversity of relevant issues. On one hand the diversity of work in pasture legume research and development may stem from the wide array of expertise available in Australia and New Zealand, while on the other it might suggest that research and development inputs are being thinly spread over a large number of species. With respect to determining research priorities, it was surprising that participants were most concerned with how research is funded and conducted and the need to address this by reconsidering current arrangements. A greater role for economic analysis in determining research priorities was foreshadowed. The identification and management of acid-tolerant perennial legumes for higher rainfall zone permanent pastures was nominated as a major research priority, as was the need to address problems related to pre-inoculation of legume seed. The clear message from the symposium was that there needs to be a reorganisation of pasture legume improvement in order for gains to be effectively realised, and to maintain research and development capacity.

International Perspectives on Grandparents Raising Grandchildren: Contextual Considerations for Advancing Global Discourse

2017 ◽  
Vol 86 (1) ◽  
pp. 3-33 ◽  
Author(s):  
Megan L. Dolbin-MacNab ◽  
Loriena A. Yancura
Keyword(s):  
Future Research ◽  
Grandparents Raising Grandchildren ◽  
International Perspectives ◽  
Intergenerational Caregiving ◽  
Analytic Review ◽  
Global Discourse ◽  
Global Nature ◽  
And Migration ◽  
Disease Epidemics ◽  
Informal Supports

Globally, it is common for grandparents to serve as surrogate parents to their grandchildren, often in response to family crises and other challenges such as poverty, disease epidemics, and migration. Despite the global nature of this intergenerational caregiving arrangement, there have been few contextually focused examinations of how grandparents’ surrogate parenting roles are enacted across countries and cultures. This analytic review addresses this issue by exploring demographic and cultural contexts, needs and experiences, and formal and informal supports for grandparents raising grandchildren in four diverse countries: China, New Zealand, Romania, and South Africa. We conclude our analysis by discussing key contextual factors, and their associated interrelationships, from which future research may elucidate how cultural, historical, and sociopolitical factors uniquely shape grandparents’ experiences. We also make recommendations for contextually informed policies and practice.

Parasite defense mechanisms in bees: behavior, immunity, antimicrobials, and symbionts

2019 ◽  
Vol 4 (1) ◽  
pp. 59-76 ◽  
Author(s):  
Alison E. Fowler ◽  
Rebecca E. Irwin ◽  
Lynn S. Adler
Keyword(s):  
Defense Mechanisms ◽  
Poor Quality ◽  
Future Research ◽  
Immune Priming ◽  
Social Bees ◽  
Bee Health ◽  
Landscape Scales ◽  
And Function ◽  
Solitary Species

Parasites are linked to the decline of some bee populations; thus, understanding defense mechanisms has important implications for bee health. Recent advances have improved our understanding of factors mediating bee health ranging from molecular to landscape scales, but often as disparate literatures. Here, we bring together these fields and summarize our current understanding of bee defense mechanisms including immunity, immunization, and transgenerational immune priming in social and solitary species. Additionally, the characterization of microbial diversity and function in some bee taxa has shed light on the importance of microbes for bee health, but we lack information that links microbial communities to parasite infection in most bee species. Studies are beginning to identify how bee defense mechanisms are affected by stressors such as poor-quality diets and pesticides, but further research on this topic is needed. We discuss how integrating research on host traits, microbial partners, and nutrition, as well as improving our knowledge base on wild and semi-social bees, will help inform future research, conservation efforts, and management.

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