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.

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 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.

scholarly journals Ethical and practical issues to consider in the governance of genomic and human research data and data sharing in South Africa: a meeting report

2019 ◽  
Vol 2 ◽  
pp. 15
Author(s):  
Ciara Staunton ◽  
Rachel Adams ◽  
Edward S. Dove ◽  
Natalie Harriman ◽  
Lyn Horn ◽  
...  
Keyword(s):  
South Africa ◽  
Data Sharing ◽  
Data Protection ◽  
Health Research ◽  
Personal Information ◽  
Open Science ◽  
Research Data ◽  
Genomic Research ◽  
Meeting Report ◽  
Challenges And Opportunities

Genomic research and biobanking has undergone exponential growth in Africa and at the heart of this research is the sharing of biospecimens and associated clinical data amongst researchers in Africa and across the world. While this move towards open science is progressing, there has been a strengthening internationally of data protection regulations that seek to safeguard the rights of data subjects while promoting the movement of data for the benefit of research. In line with this global shift, many jurisdictions in Africa are introducing data protection regulations, but there has been limited consideration of the regulation of data sharing for genomic research and biobanking in Africa. South Africa (SA) is one country that has sought to regulate the international sharing of data and has enacted the Protection of Personal Information Act (POPIA) 2013 that will change the governance and regulation of data in SA, including health research data, once it is in force. To identify and discuss challenges and opportunities in the governance of data sharing for genomic and health research data in SA, a two-day meeting was convened in February 2019 in Cape Town, SA with over 30 participants with expertise in law, ethics, genomics and biobanking science, drawn from academia, industry, and government. This report sets out some of the key challenges identified during the workshop and the opportunities and limitations of the current regulatory framework in SA.

On the Evanescence of Research Data.

1965 ◽  
Vol 20 (3) ◽  
pp. 236-236
Author(s):  
John Kosa
Keyword(s):  
Research Data

HUBUNGAN KOMUNIKASI TERAPEUTIK PERAWAT DENGAN KECEMASAN ANAK USIA PRASEKOLAH AKIBAT HOSPITALISASI

2019 ◽  
Vol 9 (2) ◽  
pp. 135-140
Author(s):  
Qurrotul Aeni ◽  
Andriyani Mustika Nurwijayanti ◽  
Muhammad Khabib Burhanuddin Iqomh
Keyword(s):  
Research Data ◽  
School Age Children ◽  
P Value ◽  
School Age ◽  
Therapeutic Communication ◽  
Cross Sectional ◽  
Communication Anxiety ◽  
Children’S Anxiety ◽  
The Relationship ◽  
Severe Anxiety

Introduction: anxiety is a condition that will be experienced by children who experience hospitalization and must get attention and management. Anxiety during hospitalization that is not properly addressed will hinder treatment and affect child development. The purpose of the study: to determine the relationship between therapeutic communication nurses and the anxiety of preschool children due to hospitalizationMethod: The study design used descriptive correlation with a cross-sectional approach. The number of samples is 31 with purposive sampling. Collecting research data using a questionnaire.Results: The results showed a majority of therapeutic communication was 61.3%, anxiety in children due to hospitalization of 100% with severe anxiety was 58.1%, there was a relationship between therapeutic communication and children's anxiety (p = 0.001). Suggestions need to be carried out further research on the factors that influence the low therapeutic communication in nurses.Discussion: The results of the statistical analysis using the Spearman's Rho test got p value 0.001 (p <0.05) the relationship between therapeutic communication and the anxiety of pre-school age children who experienced hospitalization, therapeutic communication can be used as an action to prevent anxiety due to hospitalization in pre-school age children.Suggestion: need to do further research on the factors that influence the low therapeutic communication in nurses Keywords: therapeutic communication, anxiety, hospitalization.  

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