Reassessing values for emerging big data technologies: integrating design-based and application-based approaches

Through the exponential growth in digital devices and computational capabilities, big data technologies are putting pressure upon the boundaries of what can or cannot be considered acceptable from an ethical perspective. Much of the literature on ethical issues related to big data and big data technologies focuses on separate values such as privacy, human dignity, justice or autonomy. More holistic approaches, allowing a more comprehensive view and better balancing of values, usually focus on either a design-based approach, in which it is tried to implement values into the design of new technologies, or an application-based approach, in which it is tried to address the ways in which new technologies are used. Some integrated approaches do exist, but typically are more general in nature. This offers a broad scope of application, but may not always be tailored to the specific nature of big data related ethical issues. In this paper we distil a comprehensive set of ethical values from existing design-based and application-based ethical approaches for new technologies and further focus these values to the context of emerging big data technologies. A total of four value lists (from techno-moral values, value-sensitive design, anticipatory emerging technology ethics and biomedical ethics) were selected for this. The integrated list consists of a total of ten values: human welfare, autonomy, non-maleficence, justice, accountability, trustworthiness, privacy, dignity, solidarity and environmental welfare. Together, this set of values provides a comprehensive and in-depth overview of the values that are to be taken into account for emerging big data technologies.Horizon 2020(H2020)No 731873 (e-SIDES)Article / Letter to editorInstituut voor Metajuridic

Reassessing values for emerging big data technologies: integrating design-based and application-based approaches

Through the exponential growth in digital devices and computational capabilities, big data technologies are putting pressure upon the boundaries of what can or cannot be considered acceptable from an ethical perspective. Much of the literature on ethical issues related to big data and big data technologies focuses on separate values such as privacy, human dignity, justice or autonomy. More holistic approaches, allowing a more comprehensive view and better balancing of values, usually focus on either a design-based approach, in which it is tried to implement values into the design of new technologies, or an application-based approach, in which it is tried to address the ways in which new technologies are used. Some integrated approaches do exist, but typically are more general in nature. This offers a broad scope of application, but may not always be tailored to the specific nature of big data related ethical issues. In this paper we distil a comprehensive set of ethical values from existing design-based and application-based ethical approaches for new technologies and further focus these values to the context of emerging big data technologies. A total of four value lists (from techno-moral values, value-sensitive design, anticipatory emerging technology ethics and biomedical ethics) were selected for this. The integrated list consists of a total of ten values: human welfare, autonomy, non-maleficence, justice, accountability, trustworthiness, privacy, dignity, solidarity and environmental welfare. Together, this set of values provides a comprehensive and in-depth overview of the values that are to be taken into account for emerging big data technologies.Horizon 2020(H2020)No 731873 (e-SIDES)Article / Letter to editorInstituut voor Metajuridic

Current issues in medically assisted reproduction and genetics in Europe: research, clinical practice, ethics, legal issues and policy. European Society of Human Genetics and European Society of Human Reproduction and Embryology.

In March 2005, a group of experts from the European Society of Human Genetics and European Society of Human Reproduction and Embryology met to discuss the interface between genetics and assisted reproductive technology (ART), and published an extended background paper, recommendations and two Editorials. Seven years later, in March 2012, a follow-up interdisciplinary workshop was held, involving representatives of both professional societies, including experts from the European Union Eurogentest2 Coordination Action Project. The main goal of this meeting was to discuss developments at the interface between clinical genetics and ARTs. As more genetic causes of reproductive failure are now recognised and an increasing number of patients undergo testing of their genome before conception, either in regular health care or in the context of direct-to-consumer testing, the need for genetic counselling and preimplantation genetic diagnosis (PGD) may increase. Preimplantation genetic screening (PGS) thus far does not have evidence from randomised clinical trials to substantiate that the technique is both effective and efficient. Whole-genome sequencing may create greater challenges both in the technological and interpretational domains, and requires further reflection about the ethics of genetic testing in ART and PGD/PGS. Diagnostic laboratories should be reporting their results according to internationally accepted accreditation standards (International Standards Organisation - ISO 15189). Further studies are needed in order to address issues related to the impact of ART on epigenetic reprogramming of the early embryo. The legal landscape regarding assisted reproduction is evolving but still remains very heterogeneous and often contradictory. The lack of legal harmonisation and uneven access to infertility treatment and PGD/PGS fosters considerable cross-border reproductive care in Europe and beyond. The aim of this paper is to complement previous publications and provide an update of selected topics that have evolved since 2005

Overlapping cortical malformations in patients with pathogenic variants in GRIN1 and GRIN2B

Background Malformations of cortical development (MCDs) have been reported in a subset of patients with pathogenic heterozygous variants in GRIN1 or GRIN2B, genes which encode for subunits of the N-methyl-D-aspartate receptor (NMDAR). The aim of this study was to further define the phenotypic spectrum of NMDAR-related MCDs. Methods We report the clinical, radiological and molecular features of 7 new patients and review data on 18 previously reported individuals with NMDAR-related MCDs. Neuropathological findings for two individuals with heterozygous variants in GRIN1 are presented. We report the clinical and neuropathological features of one additional individual with homozygous pathogenic variants in GRIN1. Results Heterozygous variants in GRIN1 and GRIN2B were associated with overlapping severe clinical and imaging features, including global developmental delay, epilepsy, diffuse dysgyria, dysmorphic basal ganglia and hippocampi. Neuropathological examination in two fetuses with heterozygous GRIN1 variants suggests that proliferation as well as radial and tangential neuronal migration are impaired. In addition, we show that neuronal migration is also impaired by homozygous GRIN1 variants in an individual with microcephaly with simplified gyral pattern. Conclusion These findings expand our understanding of the clinical and imaging features of the ‘NMDARopathy’ spectrum and contribute to our understanding of the likely underlying pathogenic mechanisms leading to MCD in these patients. Data availability statement Data are available upon reasonable request. All data relevant to the study are included in the article or uploaded as supplementary information. Anonymised data from this study will be shared by request from any qualified investigator

The improvement of the best practice guidelines for preimplantation genetic diagnosis of cystic fibrosis : toward an international consensus

Cystic fibrosis (CF) is one of the most common indications for preimplantation genetic diagnosis (PGD) for single gene disorders, giving couples the opportunity to conceive unaffected children without having to consider termination of pregnancy. However, there are no available standardized protocols, so that each center has to develop its own diagnostic strategies and procedures. Furthermore, reproductive decisions are complicated by the diversity of disease-causing variants in the CFTR (cystic fibrosis transmembrane conductance regulator) gene and the complexity of correlations between genotypes and associated phenotypes, so that attitudes and practices toward the risks for future offspring can vary greatly between countries. On behalf of the EuroGentest Network, eighteen experts in PGD and/or molecular diagnosis of CF from seven countries attended a workshop held in Montpellier, France, on 14 December 2011. Building on the best practice guidelines for amplification-based PGD established by ESHRE (European Society of Human Reproduction and Embryology), the goal of this meeting was to formulate specific guidelines for CF-PGD in order to contribute to a better harmonization of practices across Europe. Different topics were covered including variant nomenclature, inclusion criteria, genetic counseling, PGD strategy and reporting of results. The recommendations are summarized here, and updated information on the clinical significance of CFTR variants and associated phenotypes is presented

Waarom hebben we een ‘recht op uitleg’ wanneer machines over ons beslissen?

Contains fulltext : 219099pub.pdf (publisher's version ) (Open Access)11 p

Reassessing values for emerging big data technologies: integrating design-based and application-based approaches

Through the exponential growth in digital devices and computational capabilities, big data technologies are putting pressure upon the boundaries of what can or cannot be considered acceptable from an ethical perspective. Much of the literature on ethical issues related to big data and big data technologies focuses on separate values such as privacy, human dignity, justice or autonomy. More holistic approaches, allowing a more comprehensive view and better balancing of values, usually focus on either a design-based approach, in which it is tried to implement values into the design of new technologies, or an application-based approach, in which it is tried to address the ways in which new technologies are used. Some integrated approaches do exist, but typically are more general in nature. This offers a broad scope of application, but may not always be tailored to the specific nature of big data related ethical issues. In this paper we distil a comprehensive set of ethical values from existing design-based and application-based ethical approaches for new technologies and further focus these values to the context of emerging big data technologies. A total of four value lists (from techno-moral values, value-sensitive design, anticipatory emerging technology ethics and biomedical ethics) were selected for this. The integrated list consists of a total of ten values: human welfare, autonomy, non-maleficence, justice, accountability, trustworthiness, privacy, dignity, solidarity and environmental welfare. Together, this set of values provides a comprehensive and in-depth overview of the values that are to be taken into account for emerging big data technologies

Reassessing values for emerging big data technologies: integrating design-based and application-based approaches

Through the exponential growth in digital devices and computational capabilities, big data technologies are putting pressure upon the boundaries of what can or cannot be considered acceptable from an ethical perspective. Much of the literature on ethical issues related to big data and big data technologies focuses on separate values such as privacy, human dignity, justice or autonomy. More holistic approaches, allowing a more comprehensive view and better balancing of values, usually focus on either a design-based approach, in which it is tried to implement values into the design of new technologies, or an application-based approach, in which it is tried to address the ways in which new technologies are used. Some integrated approaches do exist, but typically are more general in nature. This offers a broad scope of application, but may not always be tailored to the specific nature of big data related ethical issues. In this paper we distil a comprehensive set of ethical values from existing design-based and application-based ethical approaches for new technologies and further focus these values to the context of emerging big data technologies. A total of four value lists (from techno-moral values, value-sensitive design, anticipatory emerging technology ethics and biomedical ethics) were selected for this. The integrated list consists of a total of ten values: human welfare, autonomy, non-maleficence, justice, accountability, trustworthiness, privacy, dignity, solidarity and environmental welfare. Together, this set of values provides a comprehensive and in-depth overview of the values that are to be taken into account for emerging big data technologies