Journal: Journal of Law and the Biosciences

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Publisher

Oxford University Press

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ISSN

2053-9711

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2020 - 20232
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Publications 1 - 2 of 2
  • Defusing the legal and ethical minefield of epigenetic applications in the military, defense, and security context
    Item type: Journal Article
    Dalpé, Gratien; Huerne, Katherine; Dupras, Charles; et al. (2023)
    Journal of Law and the Biosciences
    Epigenetic research has brought several important technological achievements, including identifying epigenetic clocks and signatures, and developing epigenetic editing. The potential military applications of such technologies we discuss are stratifying soldiers’ health, exposure to trauma using epigenetic testing, information about biological clocks, confirming child soldiers’ minor status using epigenetic clocks, and inducing epigenetic modifications in soldiers. These uses could become a reality. This article presents a comprehensive literature review, and analysis by interdisciplinary experts of the scientific, legal, ethical, and societal issues surrounding epigenetics and the military. Notwithstanding the potential benefit from these applications, our findings indicate that the current lack of scientific validation for epigenetic technologies suggests a careful scientific review and the establishment of a robust governance framework before consideration for use in the military. In this article, we highlight general concerns about the application of epigenetic technologies in the military context, especially discrimination and data privacy issues if soldiers are used as research subjects. We also highlight the potential of epigenetic clocks to support child soldiers’ rights and ethical questions about using epigenetic engineering for soldiers’ enhancement and conclude with considerations for an ethical framework for epigenetic applications in the military, defense, and security contexts.
  • Data Protection and Ethics Requirements for Multisite Research with Health Data: A Comparative Examination of Legislative Governance Frameworks and the Role of Data Protection Technologies
    Item type: Journal Article
    Scheibner, James; Ienca, Marcello; Kechagia, Sotiria; et al. (2020)
    Journal of Law and the Biosciences
    Our paper compares legislation on data protection and research ethics requirements for health-related data and particularly personalised medicine across seven jurisdictions. Personalised medicine can improve both public and individual health by providing targeted preventative and therapeutic healthcare. For these benefits to be realised, doctors, healthcare providers, and researchers must be encouraged to share patient health data between institutions. Data sharing is an integral part of multisite research, and may require transfer across jurisdictional boundaries. However, whilst data protection, privacy, and research ethics laws protect patient confidentiality, safety, and security, they also may act as impediments to multisite research. This effect is exacerbated when transferring data across jurisdictions due to the divergences in data protection and research ethics laws. Accordingly, we adopt a comparative approach using the concept of data accessibility when examining data protection and research ethics laws in seven jurisdictions. These jurisdictions include Switzerland, Italy, Spain, the United Kingdom (which have implemented the General Data Protection Regulation), the United States, Canada, and Australia. Our paper then identifies the most significant regulatory barriers to the sharing of health-related data for multisite research. According to our research, we identify these barriers as the requirements for consent, the standards for anonymisation or pseudonymisation, and adequacy of protection between jurisdictions. We also identify differences between the European Union and other jurisdictions as a significant barrier for data accessibility in cross jurisdictional multisite research. Our paper then concludes by considering how contractual and organisational solutions can be used to overcome these legislative differences. These solutions include data transfer agreements and organisational collaborations designed to ‘front load’ the process of ethics approval, so that subsequent research protocols are standardised. We also allude to the potential of technical solutions, such as distributed computing, secure multiparty computation and homomorphic encryption.
Publications 1 - 2 of 2