scholarly journals Genomic Research Data Generation, Analysis and Sharing – Challenges in the African Setting

2017 ◽  
Vol 16 ◽  
Author(s):  
Nicola Mulder ◽  
Clement A. Adebamowo ◽  
Sally N. Adebamowo ◽  
Oladimeji Adebayo ◽  
Osimhiarherhuo Adeleye ◽  
...  
Keyword(s):  
Research Data ◽  
Genomic Research ◽  
Data Generation ◽  
African Setting

scholarly journals Making Research Data Accessible

2021 ◽  
Author(s):  
Diana Kapiszewski ◽  
Sebastian Karcher
Keyword(s):  
Data Sharing ◽  
Research Method ◽  
Secondary Analysis ◽  
Research Data ◽  
Data Generation ◽  
Shared Data

This chapter argues that the benefits of data sharing will accrue more quickly, and will be more significant and more enduring, if researchers make their data “meaningfully accessible.” Data are meaningfully accessible when they can be interpreted and analyzed by scholars far beyond those who generated them. Making data meaningfully accessible requires that scholars take the appropriate steps to prepare their data for sharing, and avail themselves of the increasingly sophisticated infrastructure for publishing and preserving research data. The better other researchers can understand shared data and the more researchers who can access them, the more those data will be re-used for secondary analysis, producing knowledge. Likewise, the richer an understanding an instructor and her students can gain of the shared data being used to teach and learn a particular research method, the more useful those data are for that pedagogical purpose. And the more a scholar who is evaluating the work of another can learn about the evidence that underpins its claims and conclusions, the better their ability to identify problems and biases in data generation and analysis, and the better informed and thus stronger an endorsement of the work they can offer.

scholarly journals How Can We Not Waste Legacy Genomic Research Data?

2020 ◽  
Vol 11 ◽  
Author(s):  
Susan E. Wallace ◽  
Emily Kirby ◽  
Bartha Maria Knoppers
Keyword(s):  
Research Data ◽  
Genomic Research

scholarly journals Identifiability, Genomics and UK Data Protection Law

2010 ◽  
Vol 17 (4) ◽  
pp. 329-344 ◽  
Author(s):  
Liam Curren ◽  
Jane Kaye ◽  
Paula Boddington ◽  
Karen Melham ◽  
Naomi Hawkins ◽  
...  
Keyword(s):  
Data Protection ◽  
Genetic Research ◽  
Research Data ◽  
Genomic Research ◽  
Research Use ◽  
Next Generation Dna Sequencing ◽  
Ethical Concerns ◽  
Whole Genomes ◽  
Protection Legislation ◽  
Data Protection Law

AbstractAnalyses of individuals’ genomes — their entire DNA sequence — have increased knowledge about the links between genetics and disease. Anticipated advances in ‘next generation’ DNA-sequencing techniques will see the routine research use of whole genomes, rather than distinct parts, within the next few years. The scientific benefits of genomic research are, however, accompanied by legal and ethical concerns. Despite the assumption that genetic research data can and will be rendered anonymous, participants’ identities can sometimes be elucidated, which could cause data protection legislation to apply. We undertake a timely reappraisal of these laws — particularly new penalties — and identifiability in genomic research.

Substantive and Functional Jurisdiction

2019 ◽  
pp. 21-30
Author(s):  
Alejandro E. Camacho ◽  
Robert L. Glicksman
Keyword(s):  
Regulatory Authority ◽  
Executive Branch ◽  
Research Data ◽  
Compliance Monitoring ◽  
Data Generation ◽  
Administrative Functions ◽  
Monitoring And Enforcement ◽  
The Subject ◽  
Government Authority ◽  
Funding Research

This chapter identifies the different types of regulatory or management authority vested in agencies by legislatures or executive branch officials. Each allocation of regulatory authority has a substantive as well as a functional component. This chapter introduces the distinction between substantive jurisdiction, the subject matter a governmental institution is authorized to regulate or manage, and functional jurisdiction, the various administrative functions an agency performs. Functional jurisdiction categories include funding; research, data generation, and ambient monitoring; information compilation and distribution; information analysis; planning; standard setting; implementation and permitting; inspection and compliance monitoring; and enforcement. Affording attention to functional jurisdiction, in addition to substantive jurisdiction, provides insights about the policy and value tradeoffs among available options for allocating government authority that may otherwise be obscured.

scholarly journals Embedding indigenous principles in genomic research of culturally significant species: a conservation genomics case study

2019 ◽  
Author(s):  
Levi Collier-Robinson ◽  
Aisling Rayne ◽  
Makarini Rupene ◽  
Channell Thoms ◽  
Tammy Steeves
Keyword(s):  
Genomic Data ◽  
Research Programme ◽  
Position Statement ◽  
Genomic Research ◽  
Freshwater Crayfish ◽  
Data Generation ◽  
Cultural Significance ◽  
Conservation Genomics ◽  
Ecological Data ◽  
Genomics Research

Indigenous peoples around the world are leading discussion regarding genomic research of humans, and more recently, species of cultural significance, to ensure the ethical and equitable use of DNA. Within a Māori (indigenous people of Aotearoa New Zealand) worldview, genomic data obtained from taonga (culturally significant) species has whakapapa – generally defined as genealogy, whakapapa layers the contemporary, historical and mythological aspects of bioheritage – thus genomic data obtained from taonga species are taonga in their own right and are best studied using Māori principles. We contend it is the responsibility of researchers working with genomic data from taonga species to move beyond one-off Māori consultation toward building meaningful relationships with relevant Māori communities. Here, we reflect on our experience embedding Māori principles in genomics research as leaders of a BioHeritage National Science Challenge project entitled “Characterising adaptive variation in Aotearoa New Zealand’s terrestrial and freshwater biota”. We are co-developing a culturally-responsive evidence-based position statement regarding the benefits and risks of prioritising adaptive potential to build resilience in threatened taonga species, including species destined for customary or commercial harvest. To achieve this, we co-developed a research programme with the local subtribe, Ngāi Tūāhuriri, that integrates Māori knowledge with emerging genomic technologies and extensive ecological data for two taonga species, kōwaro (Canterbury mudfish; Neochanna burrowsius) and kēkēwai (freshwater crayfish; Paranephrops zealandicus). The foundation of our research programme is an iterative decision-making framework that includes tissue sampling as well as data generation, storage and access. Beyond upholding the promises made in The Treaty of Waitangi, we contend the integration of Māori principles in genomics research will enhance the recovery of taonga species and enable the realisation of Māori values.

scholarly journals CyVerse Austria—A Local, Collaborative Cyberinfrastructure

2020 ◽  
Vol 25 (2) ◽  
pp. 38
Author(s):  
Konrad Lang ◽  
Sarah Stryeck ◽  
David Bodruzic ◽  
Manfred Stepponat ◽  
Slave Trajanoski ◽  
...  
Keyword(s):  
Data Management ◽  
Research Process ◽  
Open Science ◽  
Research Data ◽  
Data Reuse ◽  
Data Generation ◽  
Data Archiving ◽  
Metadata Standards ◽  
Before And After ◽  
Active Research

Life sciences (LS) are advanced in research data management, since LS have established disciplinary tools for data archiving as well as metadata standards for data reuse. However, there is a lack of tools supporting the active research process in terms of data management and data analytics. This leads to tedious and demanding work to ensure that research data before and after publication are FAIR (findable, accessible, interoperable and reusable) and that analyses are reproducible. The initiative CyVerse US from the University of Arizona, US, supports all processes from data generation, management, sharing and collaboration to analytics. Within the presented project, we deployed an independent instance of CyVerse in Graz, Austria (CAT) in frame of the BioTechMed association. CAT helped to enhance and simplify collaborations between the three main universities in Graz. Presuming steps were (i) creating a distributed computational and data management architecture (iRODS-based), (ii) identifying and incorporating relevant data from researchers in LS and (iii) identifying and hosting relevant tools, including analytics software to ensure reproducible analytics using Docker technology for the researchers taking part in the initiative. This initiative supports research-related processes, including data management and analytics for LS researchers. It also holds the potential to serve other disciplines and provides potential for Austrian universities to integrate their infrastructure in the European Open Science Cloud.

Seeds of Decolonial Practice: An Autoethnographic Study of Settlers Working in Indigenous Communities

2021 ◽  
Vol 55 (2) ◽  
Author(s):  
Meaghan E. Fullerton
Keyword(s):  
Therapeutic Relationship ◽  
Critical Reflection ◽  
Indigenous Communities ◽  
Personal Transformation ◽  
Research Data ◽  
Cultural Safety ◽  
Data Generation ◽  
Cultural Narratives ◽  
Essential Component ◽  
Just Society

This autoethnographic study explores the process of cultivating a culturally safe and critically reflexive counselling practice in Indigenous contexts, an orientation that is imperative for settlers to work ethically with Indigenous clients, families, and communities. Any other approach risks recreating experiences of colonial violence in subtle or overt ways and eroding the therapeutic relationship. Research data generation included reflexive writing and interactive interviews with one female counselling therapists (aged 28) who, as a settler, has worked in multiple Indigenous communities. The analysis involved triangulation and using critical reflection and an understanding of cultural safety to interpret and learn from the data. Becoming unsettled is an emotionally evocative experience, but reflecting critically on discomforting emotions, reactions, and experiences is an essential component of personal transformation. Settlers cannot engage theoretically in decolonizing but rather must experience it first as individuals and then as ethically responsible citizens willing to challenge dominant cultural narratives and to help foster a more just society.

scholarly journals Protection of genomic research data as the objects of intellectual property

2020 ◽  
pp. 167-178
Author(s):  
Olesia Valer'evna Belaia
Keyword(s):  
Intellectual Property ◽  
Civil Law ◽  
Legal Protection ◽  
Legal Regulation ◽  
Trade Secret ◽  
Pharmaceutical Products ◽  
Research Data ◽  
Genomic Research ◽  
Intellectual Activity ◽  
Definition Of

The object of this research is the determination of legal nature of genomic research data and their role among the objects of civil law. The subject of this research is the data of preclinical and clinical studies of pharmaceutical products, mostly those that contain biomaterial and biomedical cell products. The author underlines the problem of the absence of due legal regulation of genomic research data as the objects of law within Russian legislation, as well as protection of their rightsholders from anticompetitive use. The author reveals the possibility of recognizing genomic research data as the results of intellectual activity that are subject to legal protection as objects of intellectual property, as well as the need to enshrine them in the provisions of the Part 4 of the Civil Code of the Russian Federation. The main conclusion consists in the substantiation of the need for protection of genomic research data as the objects of civil law. Arguments are adduced on the potential reference of genomic research as the results of intellectual activity to the objects of intellectual property. The list of data that may comprise trade secret is subjected to critical analysis. The author proposes the original classification of the results of intellectual activity as the objects of intellectual property from the perspective of the presence of creative beginning as directly invented by human, and indirectly reflecting the result of human activity. The conclusion is formulated on the independent nature of the results of genomic research as the objects of intellectual property in the form of the results of intellectual activity. The author underlines the need for protecting genomic research data as a variety of results of such tests as the know-how, as well as corresponding revision of legal definition of trade secret captured in civil legislation.

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