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  1.  46
    Biobanking and Risk Assessment: A Comprehensive Typology of Risks for an Adaptive Risk Governance.Kaya Akyüz, Olga Tzortzatou, Łukasz Kozera, Melanie Goisauf, Signe Mezinska, Gauthier Chassang & Michaela Th Mayrhofer - 2021 - Life Sciences, Society and Policy 17 (1):1-28.
    Biobanks act as the custodians for the access to and responsible use of human biological samples and related data that have been generously donated by individuals to serve the public interest and scientific advances in the health research realm. Risk assessment has become a daily practice for biobanks and has been discussed from different perspectives. This paper aims to provide a literature review on risk assessment in order to put together a comprehensive typology of diverse risks biobanks could potentially face. (...)
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  2.  4
    The Use of Digital Twins in Healthcare: Socio-Ethical Benefits and Socio-Ethical Risks.Marc-Jeroen Bogaardt, Elsje Oosterkamp, Mireille van Hilten & Eugen Octav Popa - 2021 - Life Sciences, Society and Policy 17 (1):1-25.
    Anticipating the ethical impact of emerging technologies is an essential part of responsible innovation. One such emergent technology is the digital twin which we define here as a living replica of a physical system. A digital twin combines various emerging technologies such as AI, Internet of Things, big data and robotics, each component bringing its own socio-ethical issues to the resulting artefacts. The question thus arises which of these socio-ethical themes surface in the process and how they are perceived by (...)
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  3.  7
    Limits of Data Anonymity: Lack of Public Awareness Risks Trust in Health System Activities. [REVIEW]Caroline Brall & Felix Gille - 2021 - Life Sciences, Society and Policy 17 (1):1-8.
    Public trust is paramount for the well functioning of data driven healthcare activities such as digital health interventions, contact tracing or the build-up of electronic health records. As the use of personal data is the common denominator for these healthcare activities, healthcare actors have an interest to ensure privacy and anonymity of the personal data they depend on. Maintaining privacy and anonymity of personal data contribute to the trustworthiness of these healthcare activities and are associated with the public willingness to (...)
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  4.  1
    A Secure Procedure for Early Career Scientists to Report Apparent Misconduct. [REVIEW]Alex Davis, Nils-Eric Sahlin, Barry Dewitt & Baruch Fischhoff - 2021 - Life Sciences, Society and Policy 17 (1):1-5.
    Early career scientists sometimes observe senior scientists engage in apparent scientific misconduct, but feel powerless to intervene, lest they imperil their careers. We propose a Secure Reporting Procedure that both protects them, when pursuing those concerns, and treats the senior scientists fairly. The proposed procedure is, we argue, consistent with the ethical principles of the scientific community, as expressed in the codes of its professional organizations. However, its implementation will require changes in procedures and regulations. Those efforts will be a (...)
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  5. “Data is the New Oil”: Citizen Science and Informed Consent in an Era of Researchers Handling of an Economically Valuable Resource.Gerardine Doyle, Katie Kirkwood, Eamonn Ambrose, Aileen K. Ho, David M. Doyle, Ingrid Holme & Etain Quigley - 2021 - Life Sciences, Society and Policy 17 (1):1-13.
    As with other areas of the social world, academic research in the contemporary healthcare setting has undergone adaptation and change. For example, research methods are increasingly incorporating citizen participation in the research process, and there has been an increase in collaborative research that brings academic and industry partners together. There have been numerous positive outcomes associated with both of these growing methodological and collaborative processes; nonetheless, both bring with them ethical considerations that require careful thought and attention. This paper addresses (...)
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  6.  2
    Willingness of Youth Without Disabilities to Have Romantic Love and Marital Relationships with Persons with Disabilities.Tewodros Habtegiorgis & Bewunetu Zewude - 2021 - Life Sciences, Society and Policy 17 (1):1-17.
    People with disabilities face attitudinal barriers including prejudice, stereotypes, and low expectations. Many young people without disabilities may doubt that people with disabilities can be fulfilling partners in any loving adult relationship. The objective of the present research was to assess the willingness of non-disabled youth to engage in conjugal relationships with persons with disabilities in Wolaita Sodo town, Ethiopia. Both descriptive and explanatory study designs were used and quantitative data were collected. A self-administered questionnaire was designed and distributed to (...)
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  7.  3
    The Use of Digital Twins in Healthcare : Socio-Ethical Benefits and Socio-Ethical Risks.Eugen Octav Popa, Mireille Hilten, Elsje Oosterkamp & Marc Jeroen Bogaardt - 2021 - Life Sciences, Society and Policy 17 (1).
    Anticipating the ethical impact of emerging technologies is an essential part of responsible innovation. One such emergent technology is the digital twin which we define here as a living replica of a physical system. A digital twin combines various emerging technologies such as AI, Internet of Things, big data and robotics, each component bringing its own socio-ethical issues to the resulting artefacts. The question thus arises which of these socio-ethical themes surface in the process and how they are perceived by (...)
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  8.  3
    Research Under the GDPR – a Level Playing Field for Public and Private Sector Research?Paul Quinn - 2021 - Life Sciences, Society and Policy 17 (1):1-33.
    Scientific research is indispensable inter alia in order to treat harmful diseases, address societal challenges and foster economic innovation. Such research is not the domain of a single type of organization but can be conducted by a range of different entities in both the public and private sectors. Given that the use of personal data may be indispensable for many forms of research, the data protection framework will play an important role in determining not only what types of research may (...)
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  9.  2
    Identifying Violence Against the LGTBI+ Community in Catalan Universities.Paquita Sanvicén-Torné, Patricia Melgar, Sandra Racionero-Plaza & Jorge-Manuel Dueñas - 2021 - Life Sciences, Society and Policy 17 (1):1-10.
    Social struggles have led to the legal recognition of the rights of LGTBI+ people in some countries. Even so, violence against LGTBI+ people is a social problem throughout the world, and has resulted in the vulnerability and victimization of the members of this group. In Spain, no research has been published to date that analyzes this problem in the university context. Considering the scarcity of studies on the identification of this type of violence in Spain, the main objective of this (...)
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  10. Investigating the Effectiveness of Nanotechnologies in Environmental Health with an Emphasis on Environmental Health Journals.Mika Sillanpää, Hans-Uwe Dahms & Zahra Aghalari - 2021 - Life Sciences, Society and Policy 17 (1):1-7.
    ObjectiveThe use of nanotechnologies is important to reduce environmental health problems in Iran, so the present study was conducted to determine the effectiveness of nanotechnologies in environmental health. This is a cross-sectional descriptive study for 11-year periods on all articles published in three specialized journals of environmental health with emphasis on the use of nanotechnologies in various fields of environmental health.ResultsIn this study, 774 articles related to 114 issues of 3 specialized environmental health journals were reviewed. A review of 774 (...)
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  11.  68
    The Funhouse Mirror: The I in Personalised Healthcare.Alain J. van Gool, Hub A. E. Zwart & Mira W. Vegter - 2021 - Life Sciences, Society and Policy 17 (1):1-15.
    Precision Medicine is driven by the idea that the rapidly increasing range of relatively cheap and efficient self-tracking devices make it feasible to collect multiple kinds of phenotypic data. Advocates of N = 1 research emphasize the countless opportunities personal data provide for optimizing individual health. At the same time, using biomarker data for lifestyle interventions has shown to entail complex challenges. In this paper, we argue that researchers in the field of precision medicine need to address the performative dimension (...)
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