Switch to: References

Add citations

You must login to add citations.
  1. Health as the Moral Principle of Post-Genomic Society: Data-Driven Arguments Against Privacy and Autonomy.Karoliina Snell - 2019 - Cambridge Quarterly of Healthcare Ethics 28 (2):201-214.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  • Anticipatory Governance in Biobanking: Security and Risk Management in Digital Health.Dagmar Rychnovská - 2021 - Science and Engineering Ethics 27 (3):1-18.
    Although big-data research has met with multiple controversies in diverse fields, political and security implications of big data in life sciences have received less attention. This paper explores how threats and risks are anticipated and acted on in biobanking, which builds research repositories for biomedical samples and data. Focusing on the biggest harmonisation cluster of biomedical research in Europe, BBMRI-ERIC, the paper analyses different logics of risk in the anticipatory discourse on biobanking. Based on document analysis, interviews with ELSI experts, (...)
    No categories
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  • The End of the HIPAA Privacy Rule?Mark A. Rothstein - 2016 - Journal of Law, Medicine and Ethics 44 (2):352-358.
    The HIPAA Privacy Rule is notoriously weak because of its incomplete coverage, numerous exclusions and exemptions, and limited rights for individuals. The three areas in which it provides the most protection are fundraising, marketing, and research. Provisions of the 21st Century Cures Act, pending in Congress, and the Notice of Proposed Rulemaking to amend the federal research regulations, awaiting final regulatory action, would weaken the privacy protections for research. If these measures are adopted, the HIPAA Privacy Rule would have so (...)
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   4 citations  
  • Some Lingering Concerns About the Precision Medicine Initiative.Mark A. Rothstein - 2016 - Journal of Law, Medicine and Ethics 44 (3):520-525.
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  • Biobank Regulation in South Korea.Won Bok Lee - 2016 - Journal of Law, Medicine and Ethics 44 (2):342-351.
    Like many other countries, South Korea has recognized the importance of biobanks as a tool for medical research and has engaged in two very important tasks to foster biobanking infrastructure: funding biobanks and setting up rules to protect the integrity of biobanks that share potentially sensitive personal information.
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  • Context-Relative Norms Determine the Appropriate Type of Consent in Clinical Biobanks: Towards a Potential Solution for the Discrepancy Between the General Data Protection Regulation and the European Data Protection Board on Requirements for Consent.R. Indrakusuma, S. Kalkman, M. J. W. Koelemay, R. Balm & D. L. Willems - 2020 - Science and Engineering Ethics 26 (6):3271-3284.
    Clinical biobanks processing data of participants in the European Union fall under the scope of the General Data Protection Regulation, which among others includes requirements for consent. These requirements are further specified by the Article 29 Working Party —an EU advisory body currently known as the European Data Protection Board. Unfortunately, their guidance is cause for some confusion. While the GDPR allows participants to give broad consent for research when specific research purposes are still unknown, the WP29 guidelines suggest that (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  • What is a Medical Information Commons?Juli M. Bollinger, Peter D. Zuk, Mary A. Majumder, Erika Versalovic, Angela G. Villanueva, Rebecca L. Hsu, Amy L. McGuire & Robert Cook-Deegan - 2019 - Journal of Law, Medicine and Ethics 47 (1):41-50.
    A 2011 National Academies of Sciences report called for an “Information Commons” and a “Knowledge Network” to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   6 citations  
  • Bioethics, Complementarity, and Corporate Criminal Liability.Ryan Long - 2017 - International Criminal Law Review 17 (6):997-1021.
    This article provides a brief introduction to some contemporary challenges found in the intersection of bioethics and international criminal law involving genetic privacy, organ trafficking, genetic engineering, and cloning. These challenges push us to re-evaluate the question of whether the international criminal law should hold corporations criminally liable. I argue that a minimalist and Strawsonian conception of corporate responsibility could be useful for deterring the wrongs outlined in first few sections and in answering compelling objections to corporate criminal liability.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark