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  1. Article: AI-driven risk scores: should social scoring and polygenic scores based on ethnicity be equally prohibited?

    Raz, Aviad / Minari, Jusaku

    Frontiers in genetics

    2023  Volume 14, Page(s) 1169580

    Language English
    Publishing date 2023-05-30
    Publishing country Switzerland
    Document type Journal Article
    ZDB-ID 2606823-0
    ISSN 1664-8021
    ISSN 1664-8021
    DOI 10.3389/fgene.2023.1169580
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article ; Online: The interplay of ethics and genetic technologies in balancing the social valuation of the human genome in UNESCO declarations.

    Gaydarska, Hristina / Takashima, Kayo / Shahrier, Shibly / Raz, Aviad / Minari, Jusaku

    European journal of human genetics : EJHG

    2024  

    Abstract: This study investigates changes in the social valuation of the human genome over the more than 30 years since the establishment of the Human Genome Project. It offers a descriptive sociological analysis of the three waves of this valuation, mainly by ... ...

    Abstract This study investigates changes in the social valuation of the human genome over the more than 30 years since the establishment of the Human Genome Project. It offers a descriptive sociological analysis of the three waves of this valuation, mainly by considering three key UNESCO declarations and a relevant report. These waves represent a shifting balance between collectivism and individualism, starting with a broadly constructed valuation of the human genome as common human heritage and moving toward a valuation of dynamic applications within various social and medical contexts (e.g., personalized genomic medicine and genome editing). We seek to broaden the analytical perspective by examining how the declarations' ethical foci are framed within the context of rapidly evolving genetic technologies and their social applications. We conclude by discussing continuity and change in value balancing vis-à-vis changing genomic technologies.
    Language English
    Publishing date 2024-02-15
    Publishing country England
    Document type Journal Article
    ZDB-ID 1141470-4
    ISSN 1476-5438 ; 1018-4813
    ISSN (online) 1476-5438
    ISSN 1018-4813
    DOI 10.1038/s41431-024-01549-3
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    In stock of ZB MED Cologne/Königswinter

    Zs.A 3589: Show issues Location:
    Je nach Verfügbarkeit (siehe Angabe bei Bestand)
    bis Jg. 1994: Bestellungen von Artikeln über das Online-Bestellformular
    Jg. 1995 - 2021: Lesesall (2.OG)
    ab Jg. 2022: Lesesaal (EG)

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  3. Article ; Online: Hope for the best, but prepare for the worst: Social media posted by participants in stem cell clinical trials.

    Takashima, Kayo / Minari, Jusaku / Chan, Sarah / Muto, Kaori

    Regenerative therapy

    2023  Volume 24, Page(s) 294–297

    Abstract: This article examines the influence of social media posts on clinical trials involving stem cell-based interventions. Based on the literature review, we identified three potential risks associated with social media posts regarding clinical trials that ... ...

    Abstract This article examines the influence of social media posts on clinical trials involving stem cell-based interventions. Based on the literature review, we identified three potential risks associated with social media posts regarding clinical trials that involve stem cell-based interventions: (1) threats to scientific validity, (2) amplification of excessive expectations, and (3) breaches of confidentiality. Additionally, preliminary recommendations are provided to safeguard the value of stem cell clinical trials for future patients in the age of social media. Our approach aims to safeguard the well-being of forthcoming participants and ensure the scientific validity of stem cell research, as well as possibly aid in the further development of shared guidelines for posting stem cell clinical trial information on social media platforms.
    Language English
    Publishing date 2023-08-09
    Publishing country Netherlands
    Document type Journal Article
    ZDB-ID 2835333-X
    ISSN 2352-3204 ; 2352-3204
    ISSN (online) 2352-3204
    ISSN 2352-3204
    DOI 10.1016/j.reth.2023.07.009
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article: Editorial: Data-intensive medicine and healthcare: ethical and social implications in the era of artificial intelligence and automated decision-making.

    Raz, Aviad / Minari, Jusaku / Schicktanz, Silke / Sharon, Tamar / Werner-Felmayer, Gabriele

    Frontiers in genetics

    2023  Volume 14, Page(s) 1280344

    Language English
    Publishing date 2023-09-07
    Publishing country Switzerland
    Document type Editorial
    ZDB-ID 2606823-0
    ISSN 1664-8021
    ISSN 1664-8021
    DOI 10.3389/fgene.2023.1280344
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  5. Article ; Online: Old and new challenges regarding comparable and viable data sharing in population-scale genomic research.

    Raz, Aviad / Minari, Jusaku / Takashima, Kayo / Gaydarska, Hristina / Hashiloni-Dolev, Yael / Horn, Ruth

    European journal of human genetics : EJHG

    2023  Volume 31, Issue 6, Page(s) 617–618

    MeSH term(s) Humans ; Genomics ; Information Dissemination
    Language English
    Publishing date 2023-03-31
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 1141470-4
    ISSN 1476-5438 ; 1018-4813
    ISSN (online) 1476-5438
    ISSN 1018-4813
    DOI 10.1038/s41431-023-01355-3
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    In stock of ZB MED Cologne/Königswinter

    Zs.A 3589: Show issues Location:
    Je nach Verfügbarkeit (siehe Angabe bei Bestand)
    bis Jg. 1994: Bestellungen von Artikeln über das Online-Bestellformular
    Jg. 1995 - 2021: Lesesall (2.OG)
    ab Jg. 2022: Lesesaal (EG)

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  6. Article: A conceptual analysis of public opinion regarding genome research in Japan.

    Shahrier, Shibly / Gaydarska, Hristina / Takashima, Kayo / Yoshizawa, Go / Minari, Jusaku

    Frontiers in genetics

    2023  Volume 14, Page(s) 1170794

    Abstract: In the 20 years since the completion of the Human Genome Project, the gap between scientific development and public understanding of genome research has been widening. While genome research has been increasingly utilized for social and clinical purposes ... ...

    Abstract In the 20 years since the completion of the Human Genome Project, the gap between scientific development and public understanding of genome research has been widening. While genome research has been increasingly utilized for social and clinical purposes in a multifaceted manner, this has resulted in an increase in the potential risks associated with genomic data. In this context, our study aims to consider the nature of public perceptions of genome research, primarily by using as a case study the results of previous public surveys relevant to donations for social benefits in Japan. We explored certain types of awareness, attitude, and intention (A-A-I) in such surveys and discussed the resultant key findings through the cultural transmission framework. Reframing the public's response toward genome research based on A-A-I analysis and behavioral science may contribute to developing more systematic communication approaches with the public. With a view to establishing such approaches, our perspective suggests some new insights to discuss the science-society gap in genome research internationally.
    Language English
    Publishing date 2023-11-28
    Publishing country Switzerland
    Document type Journal Article
    ZDB-ID 2606823-0
    ISSN 1664-8021
    ISSN 1664-8021
    DOI 10.3389/fgene.2023.1170794
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  7. Article ; Online: Learning to listen: A complementary approach to informed consent for patients with visual impairments.

    Takashima, Kayo / Soma, Takeshi / Muto, Kaori / Nishida, Kohji / Minari, Jusaku

    Stem cell reports

    2022  

    Abstract: This forum describes an exploratory approach for assisting individuals with visual impairment during the informed consent (IC) process to participate in a cutting-edge trial. Our approach has been developed to focus on potential participants' ... ...

    Abstract This forum describes an exploratory approach for assisting individuals with visual impairment during the informed consent (IC) process to participate in a cutting-edge trial. Our approach has been developed to focus on potential participants' preparedness to give IC, along with the creation of supporting audio material.
    Language English
    Publishing date 2022-10-27
    Publishing country United States
    Document type Journal Article
    ZDB-ID 2720528-9
    ISSN 2213-6711 ; 2213-6711
    ISSN (online) 2213-6711
    ISSN 2213-6711
    DOI 10.1016/j.stemcr.2022.10.008
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  8. Article: The future regulation of artificial intelligence systems in healthcare services and medical research in the European Union.

    Meszaros, Janos / Minari, Jusaku / Huys, Isabelle

    Frontiers in genetics

    2022  Volume 13, Page(s) 927721

    Abstract: Despite its promising future, the application of artificial intelligence (AI) and automated decision-making in healthcare services and medical research faces several legal and ethical hurdles. The European Union (EU) is tackling these issues with the ... ...

    Abstract Despite its promising future, the application of artificial intelligence (AI) and automated decision-making in healthcare services and medical research faces several legal and ethical hurdles. The European Union (EU) is tackling these issues with the existing legal framework and drafting new regulations, such as the proposed AI Act. The EU General Data Protection Regulation (GDPR) partly regulates AI systems, with rules on processing personal data and protecting data subjects against solely automated decision-making. In healthcare services, (automated) decisions are made more frequently and rapidly. However, medical research focuses on innovation and efficacy, with less direct decisions on individuals. Therefore, the GDPR's restrictions on solely automated decision-making apply mainly to healthcare services, and the rights of patients and research participants may significantly differ. The proposed AI Act introduced a risk-based approach to AI systems based on the principles of ethical AI. We analysed the complex connection between the GDPR and AI Act, highlighting the main issues and finding ways to harmonise the principles of data protection and ethical AI. The proposed AI Act may complement the GDPR in healthcare services and medical research. Although several years may pass before the AI Act comes into force, many of its goals will be realised before that.
    Language English
    Publishing date 2022-10-04
    Publishing country Switzerland
    Document type Journal Article
    ZDB-ID 2606823-0
    ISSN 1664-8021
    ISSN 1664-8021
    DOI 10.3389/fgene.2022.927721
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  9. Article ; Online: Contiguous Governance of Synchronic and Diachronic Changes for the Use of Genome Editing Technologies

    Jusaku Minari / Nariyoshi Shinomiya / Kayo Takashima / Go Yoshizawa

    Frontiers in Political Science, Vol

    2022  Volume 4

    Abstract: Genome editing technologies are increasingly coming under scrutiny, based on various social value judgments in biomedical research, clinical care, and public health. A central cause of this sociotechnical tension is that these technologies are capable of ...

    Abstract Genome editing technologies are increasingly coming under scrutiny, based on various social value judgments in biomedical research, clinical care, and public health. A central cause of this sociotechnical tension is that these technologies are capable of precisely and easily creating genome-modified organisms and human cells and tissues. To exemplify a general framework for a national governance system of genome editing technologies, we first look at the regulatory dynamics in Japan. Second, we expose the potential tension between national and international debates and directions for the global harmonization of genome editing technologies. Third, underpinning these two perspectives, we propose contiguous governance as a novel model of the governance of emerging biotechnologies from both synchronic and diachronic perspectives. These perspectives, derived from genome editing technologies, can contribute to a better understanding and consideration of future regulations and governance systems.
    Keywords governance ; syncronicity ; diachronicity ; genome editing ; future generations ; Political science ; J
    Subject code 360
    Language English
    Publishing date 2022-02-01T00:00:00Z
    Publisher Frontiers Media S.A.
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  10. Article ; Online: Challenges for precision public health communication in the era of genomic medicine.

    Raz, Aviad / Timmermans, Stefan / Eyal, Gil / Brothers, Kyle / Minari, Jusaku

    Genetics in medicine : official journal of the American College of Medical Genetics

    2022  Volume 24, Issue 9, Page(s) 1814–1820

    Abstract: Although still in the early stages of development, the advent of fast, high-output, and cost-effective next-generation DNA sequencing technology is moving precision medicine into public health. Before this shift toward next-generation sequencing in ... ...

    Abstract Although still in the early stages of development, the advent of fast, high-output, and cost-effective next-generation DNA sequencing technology is moving precision medicine into public health. Before this shift toward next-generation sequencing in public health settings, individual patients met geneticists after showing symptoms and through limited family screening. In the new era of precision public health, everyone is a possible participant in genetic sequencing, simply by being born (newborn screening), by donating blood (biobanking), or through population screening. These initiatives are increasingly offered to individuals throughout their life and more individuals are encountering opportunities to use DNA sequencing. This article raises awareness of these growing areas and calls for different models of public engagement and communication about genomics, including screening asymptomatic populations, obtaining consent for unspecified and unforeseen future uses of genomic data, and managing variants of uncertain significance. Given that such communication challenges loom large, established norms of practice in genomic medicine and research should be reconsidered.
    MeSH term(s) Biological Specimen Banks ; Genomic Medicine ; Health Communication ; Humans ; Infant, Newborn ; Precision Medicine ; Public Health
    Language English
    Publishing date 2022-06-02
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 1455352-1
    ISSN 1530-0366 ; 1098-3600
    ISSN (online) 1530-0366
    ISSN 1098-3600
    DOI 10.1016/j.gim.2022.05.010
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    In stock of ZB MED Cologne/Königswinter

    Zs.A 5059: Show issues Location:
    Je nach Verfügbarkeit (siehe Angabe bei Bestand)
    bis Jg. 1994: Bestellungen von Artikeln über das Online-Bestellformular
    Jg. 1995 - 2021: Lesesall (2.OG)
    ab Jg. 2022: Lesesaal (EG)

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