Search results for: genetic data protection issues

Authors: Inigo de Miguel Beriain

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Genetic data of deceased persons are of great interest for both biomedical research and clinical use. This is due to several reasons. On the one hand, many of our diseases have a genetic component; on the other hand, we share genes with a good part of our biological family. Therefore, it would be possible to improve our response considerably to these pathologies if we could use these data. Unfortunately, at the present moment, the status of data on the deceased is far from being satisfactorily resolved by the EU data protection regulation. Indeed, the General Data Protection Regulation has explicitly excluded these data from the category of personal data. This decision has given rise to a fragmented legal framework on this issue. Consequently, each EU member state offers very different solutions. For instance, Denmark considers the data as personal data of the deceased person for a set period of time while some others, such as Spain, do not consider this data as such, but have introduced some specifically focused regulations on this type of data and their access by relatives. This is an extremely dysfunctional scenario from multiple angles, not least of which is scientific cooperation at the EU level. This contribution attempts to outline a solution to this dilemma through an alternative proposal. Its main hypothesis is that, in reality, health data are, in a sense, a rara avis within data in general because they do not refer to one person but to several. Hence, it is possible to think that all of them can be considered data subjects (although not all of them can exercise the corresponding rights in the same way). When the person from whom the data were obtained dies, the data remain as personal data of his or her biological relatives. Hence, the general regime provided for in the GDPR may apply to them. As these are personal data, we could go back to thinking in terms of a general prohibition of data processing, with the exceptions provided for in Article 9.2 and on the legal bases included in Article 6. This may be complicated in practice, given that, since we are dealing with data that refer to several data subjects, it may be complex to refer to some of these bases, such as consent. Furthermore, there are theoretical arguments that may oppose this hypothesis. In this contribution, it is shown, however, that none of these objections is of sufficient substance to delegitimize the argument exposed. Therefore, the conclusion of this contribution is that we can indeed build a general framework on the processing of personal data of deceased persons in the context of the GDPR. This would constitute a considerable improvement over the current regulatory framework, although it is true that some clarifications will be necessary for its practical application.

Keywords: collective data conceptual issues, data from deceased people, genetic data protection issues, GDPR and deceased people

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Authors: Nazura Abdul Manap, Siti Nur Farah Atiqah Salleh

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For decades, the misuse of personal data has been a critical issue. Malaysia has accepted responsibility by implementing the Malaysian Personal Data Protection Act 2010 to secure personal data (PDPA 2010). After more than a decade, this legislation is set to be revised by the current PDPA 2023 Amendment Bill to align with the world's key personal data protection regulations, such as the European Union General Data Protection Regulations (GDPR). Among the other suggested adjustments is the Data User's appointment of a Data Protection Officer (DPO) to ensure the commercial entity's compliance with the PDPA 2010 criteria. The change is expected to be enacted in parliament fairly soon; nevertheless, based on the experience of the Personal Data Protection Department (PDPD) in implementing the Act, it is projected that there will be a slew of additional concerns associated with the DPO mandate. Consequently, the goal of this article is to highlight the issues that the DPO will encounter and how the Personal Data Protection Department should respond to this subject. The study result was produced using a qualitative technique based on an examination of the current literature. This research reveals that there are probable obstacles experienced by the DPO, and thus, there should be a definite, clear guideline in place to aid DPO in executing their tasks. It is argued that appointing a DPO is a wise measure in ensuring that the legal data security requirements are met.

Keywords: guideline, law, data protection officer, personal data

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Authors: Sikander Singh Cheema, Jasmeen Kaur

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In this paper, the concept of data mining is summarized and its one of the important process i.e KDD is summarized. The data mining based on Genetic Algorithm is researched in and ways to achieve the data mining Genetic Algorithm are surveyed. This paper also conducts a formal review on the area of data mining tasks and genetic algorithm in various fields.

Keywords: data mining, KDD, genetic algorithm, descriptive mining, predictive mining

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Authors: Amy Gooden, Meshandren Naidoo

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Genetic research is not confined to a particular jurisdiction. Using direct-to-consumer genetic testing (DTC-GT) as an example, this research assesses the status of data sharing into and out of South Africa (SA). While SA laws cover the sending of genetic data out of SA, prohibiting such transfer unless a legal ground exists, the position where genetic data comes into the country depends on the laws of the country from where it is sent – making the legal position less clear.

Keywords: cross-border, data, genetic testing, law, regulation, research, sharing, South Africa

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Authors: Tomy Prihananto, Damar Apri Sudarmadi

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Indonesia recognizes the right to privacy as a human right. Indonesia provides legal protection against data management activities because the protection of personal data is a part of human rights. This paper aims to describe the arrangement of data management and data management in Indonesia. This paper is a descriptive research with qualitative approach and collecting data from literature study. Results of this paper are comprehensive arrangement of data that have been set up as a technical requirement of data protection by encryption methods. Arrangements on encryption and protection of personal data are mutually reinforcing arrangements in the protection of personal data. Indonesia has two important and immediately enacted laws that provide protection for the privacy of information that is part of human rights.

Keywords: Indonesia, protection, personal data, privacy, human rights, encryption

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Authors: Amy Gooden, Meshandren Naidoo

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Genetic research and transfers of big data are not confined to a particular jurisdiction, but there is a lack of clarity regarding the legal requirements for importing and exporting such data. Using direct-to-consumer genetic testing (DTC-GT) as an example, this research assesses the status of data sharing into and out of South Africa (SA). While SA laws cover the sending of genetic data out of SA, prohibiting such transfer unless a legal ground exists, the position where genetic data comes into the country depends on the laws of the country from where it is sent – making the legal position less clear.

Keywords: cross-border, data, genetic testing, law, regulation, research, sharing, South Africa

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Authors: Jumana Majdi Qutub

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Rationale: Cloud computing has rapidly developed the past few years. Because of the importance of providing protection for personal data used in cloud computing, the role of data protection in promoting trust and confidence in users’ data has become an important policy priority. This research examines key regulatory challenges rose by the growing use and importance of cloud computing with focusing on protection of individuals personal data. Methodology: Describing and analyzing governance challenges facing policymakers and industry in Saudi Arabia, with an account of anticipated governance responses. The aim of the research is to describe and define the regulatory challenges on cloud computing for policy making in Saudi Arabia and comparing it with potential complied issues rose in respect of transported data to EU member state. In addition, it discusses information privacy issues. Finally, the research proposes policy recommendation that would resolve concerns surrounds the privacy and effectiveness of clouds computing frameworks for data protection. Results: There are still no clear regulation in Saudi Arabia specialized in legalizing cloud computing and specialty regulations in transferring data internationally and locally. Decision makers need to review the applicable law in Saudi Arabia that protect information in cloud computing. This should be from an international and a local view in order to identify all requirements surrounding this area. It is important to educate cloud computing users about their information value and rights before putting it in the cloud to avoid further legal complications, such as making an educational program to prevent giving personal information to a bank employee. Therefore, with many kinds of cloud computing services, it is important to have it covered by the law in all aspects.

Keywords: cloud computing, cyber crime, data protection, privacy

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Authors: Elizabeta Krstić Vukelja

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Digitization of personal data is a consequence of the development of information and communication technologies that create a new work environment with many advantages and challenges, but also potential threats to privacy and personal data protection. Regulation (EU) 2016/679 of the European Parliament and of the Council is becoming a law and obligation that should address the issues of personal data protection and information security. The existence of the Regulation leads to the conclusion that national legislation in the field of virtual environment, protection of the rights of EU citizens and processing of their personal data is insufficiently effective. In the health system, special emphasis is placed on the processing of special categories of personal data, such as health data. The healthcare industry is recognized as a particularly sensitive area in which a large amount of medical data is processed, the digitization of which enables quick access and quick identification of the health insured. The protection of the individual requires quality IT solutions that guarantee the technical protection of personal categories. However, the real problems are the technical and human nature and the spatial limitations of the application of the Regulation. Some conclusions will be drawn by analyzing the implementation of the basic principles of the Regulation on the example of the Croatian health care system and comparing it with similar activities in other EU member states.

Keywords: regulation, healthcare system, personal dana protection, quality data assurance

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Authors: Pankhudi Khandelwal

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The revenue models of digital giants such as Facebook and Google, use targeted advertising for revenues. Such a model requires huge amounts of consumer data. While the data protection law deals with the protection of personal data, however, this data is acquired by the companies on the basis of consent, performance of a contract, or legitimate interests. This paper analyses the role that competition law can play in evading these loopholes for the protection of data and privacy of online consumers. Digital markets have certain distinctive features such as network effects and feedback loop, which gives incumbents of these markets a first-mover advantage. This creates a situation where the winner takes it all, thus creating entry barriers and concentration in the market. It has been also seen that this dominant position is then used by the undertakings for leveraging in other markets. This can be harmful to the consumers in form of less privacy, less choice, and stifling innovation, as seen in the cases of Facebook Cambridge Analytica, Google Shopping, and Google Android. Therefore, the article aims to provide a legal framework wherein the data protection law and competition law can come together to provide a balance in regulating digital markets. The issue has become more relevant in light of the Facebook decision by German competition authority, where it was held that Facebook had abused its dominant position by not complying with data protection rules, which constituted an exploitative practice. The paper looks into the jurisdictional boundaries that the data protection and competition authorities can work from and suggests ex ante regulation through data protection law and ex post regulation through competition law. It further suggests a change in the consumer welfare standard where harm to privacy should be considered as an indicator of low quality.

Keywords: data protection, dominance, ex ante regulation, ex post regulation

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Authors: Muhammad Muhammad Suleiman

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Cloud Computing is a versatile concept that refers to a service that allows users to outsource their data without having to worry about local storage issues. However, the most pressing issues to be addressed are maintaining a secure and reliable data repository rather than relying on untrustworthy service providers. In this study, we look at how stenography approaches and collaboration with Digital Watermarking can greatly improve the system's effectiveness and data security when used for Cloud Computing. The main requirement of such frameworks, where data is transferred or exchanged between servers and users, is safe data management in cloud environments. Steganography is the cloud is among the most effective methods for safe communication. Steganography is a method of writing coded messages in such a way that only the sender and recipient can safely interpret and display the information hidden in the communication channel. This study presents a new text steganography method for hiding a loaded hidden English text file in a cover English text file to ensure data protection in cloud computing. Data protection, data hiding capability, and time were all improved using the proposed technique.

Keywords: cloud computing, steganography, information hiding, cloud storage, security

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Authors: Olayinka Adeniyi, Melissa Omino

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The field of data privacy and data protection in Africa is still an evolving area, with many African countries yet to enact legislation on the subject. While African Governments are bringing their legislation to speed in this field, how patriarchy pervades every sector of African thought and manifests in society needs to be considered. Moreover, the laws enacted ought to be inclusive, especially towards women. This, in a nutshell, is the essence of data feminism. Data feminism is a new way of thinking about data science and data ethics that is informed by the ideas of intersectional feminism. Feminising data privacy and protection will involve thinking women, considering women in the issues of data privacy and protection, particularly in legislation, as is the case in this paper. The line of thought of women inclusion is not uncommon when even international and regional human rights specific for women only came long after the general human rights. The consideration is that these should have been inserted or rather included in the original general instruments in the first instance. Since legislation on data privacy is coming in this century, having seen the rights and shortcomings of earlier instruments, then the cue should be taken to ensure inclusive wholistic legislation for data privacy and protection in the first instance. Data feminism is arguably an area that has been scantily researched, albeit a needful one. With the spate of increase in the violence against women spiraling in the cyber world, compounding the issue of COVID-19 and the needful response of governments, and the effect of these on women and their rights, fast forward, the research on the feminism of data privacy and protection in Africa becomes inevitable. This paper seeks to answer the questions, what is data feminism in the African context, why is it important in the issue of data privacy and protection legislation; what are the laws, if any, existing on data privacy and protection in Africa, are they women inclusive, if not, why; what are the measures put in place for the privacy and protection of women in Africa, and how can this be made possible. The paper aims to investigate the issue of data privacy and protection in Africa, the legal framework, and the protection or provision that it has for women if any. It further aims to research the importance and necessity of feminizing data privacy and protection, the effect of lack of it, the challenges or bottlenecks in attaining this feat and the possibilities of accessing data privacy and protection for African women. The paper also researches the emerging practices of data privacy and protection of women in other jurisprudences. It approaches the research through the methodology of review of papers, analysis of laws, and reports. It seeks to contribute to the existing literature in the field and is explorative in its suggestion. It suggests a draft of some clauses to make any data privacy and protection legislation women inclusive. It would be useful for policymaking, academic, and public enlightenment.

Keywords: feminism, women, law, data, Africa

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Authors: Amy Gooden

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Despite its prevalence, direct-to-consumer genetic testing (DTC-GT) remains under-investigated in South Africa (SA), and the issue of regulation is yet to be examined. Therefore, this research maps the current legal landscape relating to DTC-GT in SA through a legal analysis of the extant law relevant to the industry and the issues associated therewith – with the intention of determining if and how DTC-GT is legally governed. This research analyses: whether consumers are legally permitted to collect their saliva; whether DTC-GT are medical devices; licensing, registering, and advertising; importing and exporting; and genetic research conducted by companies.

Keywords: direct-to-consumer genetic testing, genetic testing, health, law, regulation, South Africa

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Authors: Radoslav Židek, Veronika Šidlová, Radovan Kasarda, Birgit Fuerst-Waltl

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Machine learning represents a set of topics dealing with the creation and evaluation of algorithms that facilitate pattern recognition, classification, and prediction, based on models derived from existing data. The data can present identification patterns which are used to classify into groups. The result of the analysis is the pattern which can be used for identification of data set without the need to obtain input data used for creation of this pattern. An important requirement in this process is careful data preparation validation of model used and its suitable interpretation. For breeders, it is important to know the origin of animals from the point of the genetic diversity. In case of missing pedigree information, other methods can be used for traceability of animal´s origin. Genetic diversity written in genetic data is holding relatively useful information to identify animals originated from individual countries. We can conclude that the application of data mining for molecular genetic data using supervised learning is an appropriate tool for hypothesis testing and identifying an individual.

Keywords: genetic data, Pinzgau cattle, supervised learning, machine learning

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Authors: Amrashaa Singh

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In the digital age and the large cyberspace, Data Protection and Privacy have become major issues in this technological era. There was a time when social media and online shopping websites were treated as a blessing for the people. But now the tables have turned, and the people have started to look at them with suspicion. They are getting aware of the privacy implications, and they do not feel as safe as they used to initially. When Edward Snowden informed the world about the snooping United States Security Agencies had been doing, that is when the picture became clear for the people. After the Cambridge Analytica case where the data of Facebook users were stored without their consent, the doubts arose in the minds of people about how safe they actually are. In India, the case of spyware Pegasus also raised a lot of concerns. It was used to snoop on a lot of human right activists and lawyers and the company which invented the spyware claims that it only sells it to the government. The paper will be dealing with the privacy concerns in the Indian perspective with an analytical methodology. The Supreme Court here had recently declared a right to privacy a Fundamental Right under Article 21 of the Constitution of India. Further, the Government is also working on the Data Protection Bill. The point to note is that India is still a developing country, and with the bill, the government aims at data localization. But there are doubts in the minds of many people that the Government would actually be snooping on the data of the individuals. It looks more like an attempt to curb dissenters ‘lawfully’. The focus of the paper would be on these issues in India in light of the European Union (EU) General Data Protection Regulation (GDPR). The Indian Data Protection Bill is also said to be loosely based on EU GDPR. But how helpful would these laws actually be is another concern since the economic and social conditions in both countries are very different? The paper aims at discussing these concerns, how good or bad is the intention of the government behind the bill, and how the nations can act together and draft common regulations so that there is some uniformity in the laws and their application.

Keywords: Article 21, data protection, dissent, fundamental right, India, privacy

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Authors: Rishabh Srivastav, Divyam Sharma

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We propose an algorithm to cluster categorical data named as ‘Genetic algorithm initialized rough set based fuzzy K-Modes for categorical data’. We propose an amalgamation of the simple K-modes algorithm, the Rough and Fuzzy set based K-modes and the Genetic Algorithm to form a new algorithm,which we hypothesise, will provide better Centroid Model clustering results, than existing standard algorithms. In the proposed algorithm, the initialization and updation of modes is done by the use of genetic algorithms while the membership values are calculated using the rough set and fuzzy logic.

Keywords: categorical data, fuzzy logic, genetic algorithm, K modes clustering, rough sets

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Authors: Anny Retnowati, Elisabeth Sundari

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This research aims to elaborate the meaning of personal data protection principles on patient access to health data in medical records in Indonesia and its implications. The method uses normative legal research by examining health law in Indonesia regarding the patient's right to access their health data in medical records. The data will be analysed qualitatively using the interpretation method to elaborate on the limitation of the meaning of personal data protection principles on patients' access to their data in medical records. The results show that patients only have the right to obtain copies of their health data in medical records. There is no right to inspect directly at any time. Indonesian health law limits the principle of patients' right to broad access to their health data in medical records. This restriction has implications for the reduction of personal data protection as part of human rights. This research contribute to show that a limitaion of personal data protection may abuse the human rights.

Keywords: access, health data, medical records, personal data, protection

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Authors: Matthew T. Wilson

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This paper covers a selection of research utilizing grammar-based genetic programming, and illustrates how context-free grammar can be used to constrain genetic programming. It focuses heavily on grammatical evolution, one of the most popular variants of grammar-based genetic programming, and the way its operators and terminals are specialized and modified from those in genetic programming. A variety of implementations of grammatical evolution for general use are covered, as well as research each focused on using grammatical evolution or grammar-based genetic programming on a single application, or to solve a specific problem, including some of the classically considered genetic programming problems, such as the Santa Fe Trail.

Keywords: context-free grammar, genetic algorithms, genetic programming, grammatical evolution

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Authors: Anushtha Saxena

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This paper examines the process of data monetisation bye-commerce companies operating in India. Data monetisation is collecting, storing, and analysing consumers’ data to use further the data that is generated for profits, revenue, etc. Data monetisation enables e-commerce companies to get better businesses opportunities, innovative products and services, a competitive edge over others to the consumers, and generate millions of revenues. This paper analyses the issues and challenges that are faced due to the process of data monetisation. Some of the issues highlighted in the paper pertain to the right to privacy, protection of data of e-commerce consumers. At the same time, data monetisation cannot be prohibited, but it can be regulated and monitored by stringent laws and regulations. The right to privacy isa fundamental right guaranteed to the citizens of India through Article 21 of The Constitution of India. The Supreme Court of India recognized the Right to Privacy as a fundamental right in the landmark judgment of Justice K.S. Puttaswamy (Retd) and Another v. Union of India . This paper highlights the legal issue of how e-commerce businesses violate individuals’ right to privacy by using the data collected, stored by them for economic gains and monetisation and protection of data. The researcher has mainly focused on e-commerce companies like online shopping websitesto analyse the legal issue of data monetisation. In the Internet of Things and the digital age, people have shifted to online shopping as it is convenient, easy, flexible, comfortable, time-consuming, etc. But at the same time, the e-commerce companies store the data of their consumers and use it by selling to the third party or generating more data from the data stored with them. This violatesindividuals’ right to privacy because the consumers do not know anything while giving their data online. Many times, data is collected without the consent of individuals also. Data can be structured, unstructured, etc., that is used by analytics to monetise. The Indian legislation like The Information Technology Act, 2000, etc., does not effectively protect the e-consumers concerning their data and how it is used by e-commerce businesses to monetise and generate revenues from that data. The paper also examines the draft Data Protection Bill, 2021, pending in the Parliament of India, and how this Bill can make a huge impact on data monetisation. This paper also aims to study the European Union General Data Protection Regulation and how this legislation can be helpful in the Indian scenarioconcerning e-commerce businesses with respect to data monetisation.

Keywords: data monetization, e-commerce companies, regulatory framework, GDPR

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Authors: Sumedha Ganjoo, Santosh Goswami

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The rising reliance on technology places national security at the forefront of 21st-century issues. It complicates the efforts of emerging and developed countries to combat cyber threats and increases the inherent risk factors connected with technology. The inability to preserve data securely might have devastating repercussions on a massive scale. Consequently, it is vital to establish national, regional, and global data protection rules and regulations that penalise individuals who participate in immoral technology usage and exploit the inherent vulnerabilities of technology. This study paper seeks to analyse GDPR-inspired Bills in the South Asian Region and determine their suitability for the development of a worldwide data protection framework, considering that Asian countries are much more diversified than European ones. In light of this context, the objectives of this paper are to identify GDPR-inspired Bills in the South Asian Region, identify their similarities and differences, as well as the obstacles to developing a regional-level data protection mechanism, thereby satisfying the need to develop a global-level mechanism. Due to the qualitative character of this study, the researcher did a comprehensive literature review of prior research papers, journal articles, survey reports, and government publications on the aforementioned topics. Taking into consideration the survey results, the researcher conducted a critical analysis of the significant parameters highlighted in the literature study. Many nations in the South Asian area are in the process of revising their present data protection measures in accordance with GDPR, according to the primary results of this study. Consideration is given to the data protection laws of Thailand, Malaysia, China, and Japan. Significant parallels and differences in comparison to GDPR have been discussed in detail. The conclusion of the research analyses the development of various data protection legislation regimes in South Asia.

Keywords: data privacy, GDPR, Asia, data protection laws

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Authors: Oluwatobiloba Moody

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On October 12, 2014, the Nagoya Protocol, negotiated by Parties to the Convention on Biological Diversity (CBD), entered into force. The Protocol was negotiated to implement the third objective of the CBD which relates to the fair and equitable sharing of benefits arising from the utilization of genetic resources (GRs). The Protocol aims to ‘protect’ GRs and traditional knowledge (TK) associated with GRs from ‘biopiracy’, through the establishment of a binding international regime on access and benefit sharing (ABS). In reflecting on the question of ‘effectiveness’ in the Protocol’s implementation, this paper argues that the underlying problem of ‘biopiracy’, which the Protocol seeks to address, is one which goes beyond the ABS regime. It rather thrives due to indispensable factors emanating from the global intellectual property (IP) regime. It contends that biopiracy therefore constitutes an international problem of ‘borders’ as much as of ‘regimes’ and, therefore, while the implementation of the Protocol may effectively address the ‘trans-border’ issues which have hitherto troubled African provider countries in their establishment of regulatory mechanisms, it remains unable to address the ‘trans-regime’ issues related to the eradication of biopiracy, especially those issues which involve the IP regime. This is due to the glaring incoherence in the Nagoya Protocol’s implementation and the existing global IP system. In arriving at conclusions, the paper examines the ongoing related discussions within the IP regime, specifically those within the WIPO Intergovernmental Committee on Intellectual Property and Genetic Resources, Traditional Knowledge and Folklore (IGC) and the WTO TRIPS Council. It concludes that the Protocol’s effectiveness in protecting TK associated with GRs is conditional on the attainment of outcomes, within the ongoing negotiations of the IP regime, which could be implemented in a coherent manner with the Nagoya Protocol. It proposes specific ways to achieve this coherence. Three main methodological steps have been incorporated in the paper’s development. First, a review of data accumulated over a two year period arising from the coordination of six important negotiating sessions of the WIPO Intergovernmental Committee on Intellectual Property and Genetic Resources, Traditional Knowledge and Folklore. In this respect, the research benefits from reflections on the political, institutional and substantive nuances which have coloured the IP negotiations and which provide both the context and subtext to emerging texts. Second, a desktop review of the history, nature and significance of the Nagoya Protocol, using relevant primary and secondary literature from international and national sources. Third, a comparative analysis of selected biopiracy cases is undertaken for the purpose of establishing the inseparability of the IP regime and the ABS regime in the conceptualization and development of solutions to biopiracy. A comparative analysis of select African regulatory mechanisms (Kenya, South Africa and Ethiopia and the ARIPO Swakopmund Protocol) for the protection of TK is also undertaken.

Keywords: biopiracy, intellectual property, Nagoya protocol, traditional knowledge

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Authors: Zheng Miao, Dennis Fernandez

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CRISPR research has the potential to completely transform life science, agriculture, live-stock and the health care industry. The Intellectual Property derived from its research has raised significant attention in the academic as well as the biopharmaceutical industry culminating an urgent need for strategic IP protection. We review the rudimentary concepts and key competitors of CRISPR technologies as well as the paramount strategies for intellectual property protection. Further, we elaborate on prosecution issues related to CRISPR patents as well as possible solutions to various patent laws, interferences and litigation. Finally, we address how the bioinformatics of the CRISPR technology begs an inquiry into issues of privacy and a host of ethical concerns.

Keywords: bioinformatics, CRISPR, biotechnology, intellectual property

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Authors: Agi Sunday

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A descriptive analysis of reported cases of sickle cell disease and the level of awareness about genetic counselling in 30 hospitals were carried out. Additionally, 150 individuals between ages 16-45 were randomly selected for evaluation of genetic counselling awareness. The main tools for this study were questionnaires which were taken to hospitals, and individuals completed the others. The numbers of reported cases of sickle cell disease recorded in private, public and teaching hospitals were 14 and 57; 143 and 89; 272 and 57 for the periods of 1995-2000 and 2001-2005, respectively. A general informal genetic counselling took place mostly in the hospitals visited. 122 (86%) individuals had the knowledge of genetic disease and only 43 (30.3%) individuals have been exposed to genetic counselling. 64% of individuals agreed that genetic counselling would help in the prevention of genetic disease.

Keywords: sickle disease, genetic counseling, genetic testing, advocacy

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Authors: M. F. Miah, A. Chakrabarty

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Two popular and highly valued fish, Stinging catfish (Heteropneustes fossilis) and Asian catfish (Clarias batrachus) are considered for observing genetic enhancement. Cross breeding was performed considering wild and farmed fish through inducing agent. Five RAPD markers were used to assess genetic diversity among parents and offspring of these two catfish for evaluating genetic enhancement in F1 generation. Considering different genetic data such as banding pattern of DNA, polymorphic loci, polymorphic information content (PIC), inter individual pair wise similarity, Nei genetic similarity, genetic distance, phylogenetic relationships, allele frequency, genotype frequency, intra locus gene diversity and average gene diversity of parents and offspring of these two fish were analyzed and finally in both cases higher genetic diversity was found in F1 generation than the parents.

Keywords: Heteropneustes fossilis, Clarias batrachus, cross breeding, genetic enhancement

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Authors: Ioannis Iglezakis, Theodoros D. Trokanas, Panagiota Kiortsi

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This paper aims to explore major legal issues arising from the collection and processing of Health Big Data in the light of the new European secondary legislation for the protection of personal data of natural persons, placing emphasis on the General Data Protection Regulation 679/2016. Whether Big Health Data can be characterised as ‘personal data’ or not is really the crux of the matter. The legal ambiguity is compounded by the fact that, even though the processing of Big Health Data is premised on the de-identification of the data subject, the possibility of a combination of Big Health Data with other data circulating freely on the web or from other data files cannot be excluded. Another key point is that the application of some provisions of GPDR to Big Health Data may both absolve the data controller of his legal obligations and deprive the data subject of his rights (e.g., the right to be informed), ultimately undermining the fundamental right to the protection of personal data of natural persons. Moreover, data subject’s rights (e.g., the right not to be subject to a decision based solely on automated processing) are heavily impacted by the use of AI, algorithms, and technologies that reclaim health data for further use, resulting in sometimes ambiguous results that have a substantial impact on individuals. On the other hand, as the COVID-19 pandemic has revealed, Big Data analytics can offer crucial sources of information. In this respect, this paper identifies and systematises the legal provisions concerned, offering interpretative solutions that tackle dangers concerning data subject’s rights while embracing the opportunities that Big Health Data has to offer. In addition, particular attention is attached to the scope of ‘consent’ as a legal basis in the collection and processing of Big Health Data, as the application of data analytics in Big Health Data signals the construction of new data and subject’s profiles. Finally, the paper addresses the knotty problem of role assignment (i.e., distinguishing between controller and processor/joint controllers and joint processors) in an era of extensive Big Health data sharing. The findings are the fruit of a current research project conducted by a three-member research team at the Faculty of Law of the Aristotle University of Thessaloniki and funded by the Greek Ministry of Education and Religious Affairs.

Keywords: big health data, data subject rights, GDPR, pandemic

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Authors: Leandro Moura da Silva

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The international community has strived to create legal mechanisms to protect their biodiversity, but this can represent, sometimes, particularly in the case of regulatory regime on access to genetic resources, an excessive nationalism which transforms itself into a significant obstacle to scientific progress causing damages to the country and to local farmers. Although it has been poorly publicized in the media, the international legal system was marked, in 2014, by the entry into force of the Nagoya Protocol, which regulates the access and benefit sharing of genetic resources of the States Party to that legal instrument. However, it’s not reasonable to think of regulating access to genetic resources without reflecting on the links of this important subject with other related issues, such as family farming and agribusiness, food safety, food security, intellectual property rights (on seeds, genetic material, new plant varieties, etc.), environmental sustainability, biodiversity, and biosafety.

Keywords: international law, regulation on agriculture, agronomy techniques, sustainability, genetic resources and new crop varieties, CBD, Nagoya Protocol, ITPGRFA

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Authors: Nirmala Gopal, Sheetal Bhoola, Audecious Mugwagwa

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This paper discusses the continued infringement and exploitation of data by non-state actors for destructive purposes, emphasizing radical terrorist organizations. It will discuss how terrorist organizations access and use data to foster their nefarious agendas. It further examines how cybersecurity, designed as a tool to curb data exploitation, is ineffective in raising global citizens' concerns about how their data can be kept safe and used for its acquired purpose. The study interrogates several policies and data protection instruments, such as the Data Protection Act, Cyber Security Policies, Protection of Personal Information(PPI) and General Data Protection Regulations (GDPR), to understand data use and storage in democratic states. The study outcomes point to the fact that international cybersecurity and cybercrime legislation, policies, and conventions have not curbed violations of data access and use by radical terrorist groups. The study recommends ways to enhance cybersecurity and reduce cyber risks using democratic principles.

Keywords: cybersecurity, data exploitation, terrorist organizations, data democracy

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Authors: Prikhil Agrawal, N. Priyanka

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With the increase of millions of users on Internet day by day, it is very essential to maintain highly reliable and secured data communication between various corporations. Although there are various traditional security imparting techniques such as antivirus software, password protection, data encryption, biometrics and firewall etc. But still network security has become the main issue in various leading companies. So IDSs have become an essential component in terms of security, as it can detect various network attacks and respond quickly to such occurrences. IDSs are used to detect unauthorized access to a computer system. This paper describes various intrusion detection techniques using GA approach. The intrusion detection problem has become a challenging task due to the conception of miscellaneous computer networks under various vulnerabilities. Thus the damage caused to various organizations by malicious intrusions can be mitigated and even be deterred by using this powerful tool.

Keywords: genetic algorithm (GA), intrusion detection system (IDS), dataset, network security

Procedia PDF Downloads 269

Authors: M. Naidoo

Abstract:

Artificial intelligence often requires large amounts of good quality data. Within important fields, such as healthcare, the training of AI systems predominately relies on health and personal data; however, the usage of this data is complicated by various layers of law and ethics that seek to protect individuals’ privacy rights. This research seeks to establish the challenges AI and data sciences pose to (i) informational rights, (ii) privacy rights, and (iii) data protection. To solve some of the issues presented, various methods are suggested, such as embedding values in technological development, proper balancing of rights and interests, and others.

Keywords: artificial intelligence, data science, law, policy

Procedia PDF Downloads 88

Authors: Maria Jędrzejczak, Patryk Pieniążek

Abstract:

The European legal reality is on the eve of significant change. In European Union law, there is talk of a “fourth industrial revolution”, which is driven by massive data resources linked to powerful algorithms and powerful computing capacity. The above is closely linked to technological developments in the area of artificial intelligence, which has prompted an analysis covering both the legal environment as well as the economic and social impact, also from an ethical perspective. The discussion on the regulation of artificial intelligence is one of the most serious yet widely held at both European Union and Member State level. The literature expects legal solutions to guarantee security for fundamental rights, including privacy, in artificial intelligence systems. There is no doubt that personal data have been increasingly processed in recent years. It would be impossible for artificial intelligence to function without processing large amounts of data (both personal and non-personal). The main driving force behind the current development of artificial intelligence is advances in computing, but also the increasing availability of data. High-quality data are crucial to the effectiveness of many artificial intelligence systems, particularly when using techniques involving model training. The use of computers and artificial intelligence technology allows for an increase in the speed and efficiency of the actions taken, but also creates security risks for the data processed of an unprecedented magnitude. The proposed regulation in the field of artificial intelligence requires analysis in terms of its impact on the regulation on personal data protection. It is necessary to determine what the mutual relationship between these regulations is and what areas are particularly important in the personal data protection regulation for processing personal data in artificial intelligence systems. The adopted axis of considerations is a preliminary assessment of two issues: 1) what principles of data protection should be applied in particular during processing personal data in artificial intelligence systems, 2) what regulation on liability for personal data breaches is in such systems. The need to change the regulations regarding the rights and obligations of data subjects and entities processing personal data cannot be excluded. It is possible that changes will be required in the provisions regarding the assignment of liability for a breach of personal data protection processed in artificial intelligence systems. The research process in this case concerns the identification of areas in the field of personal data protection that are particularly important (and may require re-regulation) due to the introduction of the proposed legal regulation regarding artificial intelligence. The main question that the authors want to answer is how the European Union regulation against data protection breaches in artificial intelligence systems is shaping up. The answer to this question will include examples to illustrate the practical implications of these legal regulations.

Keywords: data protection law, personal data, AI law, personal data breach

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Authors: Dheyaa W. Abbood, Rafa H. AL-Suhaili, May S. Saleh

Abstract:

A model using the artificial neural networks and genetic algorithm technique is developed for obtaining optimum dimensions of the foundation length and protections of small hydraulic structures. The procedure involves optimizing an objective function comprising a weighted summation of the state variables. The decision variables considered in the optimization are the upstream and downstream cutoffs length sand their angles of inclination, the foundation length, and the length of the downstream soil protection. These were obtained for a given maximum difference in head, depth of impervious layer and degree of anisotropy.The optimization carried out subjected to constraints that ensure a safe structure against the uplift pressure force and sufficient protection length at the downstream side of the structure to overcome an excessive exit gradient. The Geo-studios oft ware, was used to analyze 1200 different cases. For each case the length of protection and volume of structure required to satisfy the safety factors mentioned previously were estimated. An ANN model was developed and verified using these cases input-output sets as its data base. A MatLAB code was written to perform a genetic algorithm optimization modeling coupled with this ANN model using a formulated optimization model. A sensitivity analysis was done for selecting the cross-over probability, the mutation probability and level ,the number of population, the position of the crossover and the weights distribution for all the terms of the objective function. Results indicate that the most factor that affects the optimum solution is the number of population required. The minimum value that gives stable global optimum solution of this parameters is (30000) while other variables have little effect on the optimum solution.

Keywords: inclined cutoff, optimization, genetic algorithm, artificial neural networks, geo-studio, uplift pressure, exit gradient, factor of safety

Procedia PDF Downloads 302