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Governing, Protecting, and Regulating the Future of Genome Editing
This edited collection examines the ethical, legal, social and policy implications of genome editing technologies. Moreover, it offers a broad spectrum of timely legal analysis related to bringing genome editing to the market and making it available to patients, including addressing genome editing technology regulation through procedures for regulatory approval, patent law and competition law. In twelve chapters, this volume offers persuasive arguments for justifying transformative regulatory interventions regarding human genome editing, as well as the various legal venues for introducing necessary or desirable changes needed to create an environment for realizing the potential of genome editing technology for the benefit of patients and society.
GDPR and Biobanking
Part I Setting the scene -- Introduction: Individual rights, the public interest and biobank research 4000 (8) -- Genetic data and privacy protection -- Part II GDPR and European responses -- Biobank governance and the impact of the GDPR on the regulation of biobank research -- Controller' and processor's responsibilities in biobank research under GDPR -- Individual rights in biobank research under GDPR -- Safeguards and derogations relating to processing for archiving purposes in the scientific purposes: Article 89 analysis for biobank research -- A Pan-European analysis of Article 89 implementation and national biobank research regulations -- EEA, Switzerland analysis of GDPR requirements and national biobank research regulations -- Part III National insights in biobank regulatory frameworks -- Selected 10-15 countries for reports: Germany -- Greece -- France -- Finland -- Sweden -- United Kingdom -- Part IV Conclusions -- Reflections on individual rights, the public interest and biobank research, ramifications and ways forward. .
Protecting Genetic Privacy in Biobanking Through Data Protection Law
Hallinan argues that the substantive framework presented by the GDPR offers an admirable base-line level of protection for the range of genetic privacy rights engaged by biobanking.
Human Germline Modification and the Right to Science
A survey of the regulation of human germline genome modification in eighteen countries and the emerging international standards.
The Queer Outside in Law
This book contributes to current debates about “queer outsides” and “queer outsiders” that emerge from tensions in legal reforms aimed at improving the lives of lesbian, gay, bisexual, transgender, intersex, and queer people in the United Kingdom. LGBTIQ people in the UK have moved from being situated as “outlaws” – through prohibitions on homosexuality or cross-dressing – to respectable “in laws” – through the emerging acceptance of same-sex families and self-identified genders. From the partial decriminalisation of homosexuality in the Sexual Offences Act 1967, to the provision of a bureaucratic mechanism to amend legal sex in the Gender Recognition Act 2004, bringing...
Personal Genome Medicine
In the years following FDA approval of direct-to-consumer, genetic-health-risk testing, millions of people in the United States have sent their DNA to companies to receive personal genetic health risk information without physician or other learned medical professional involvement. In Personal Genome Medicine, Michael J. Malinowski examines the ethical, legal, and social implications of this development. Drawing from the past and present of medicine in the U.S., Malinowski applies law, policy, public and private sector practices, and governing norms to analyze the commercial personal genome sequencing and testing sectors and to assess their impact on the future of U.S. medicine. Written in relatable and accessible language, the book also proposes regulatory reforms for government and medical professionals that will enable technological advancements while maintaining personal and public health standards.
Bizarre Bioethics
Bizarre bioethics -- The establishment of bioethics - Ghosts - Monsters - Pilgrims - Prophets - Relics -- Critical bioethics.
Children's Rights: New Issues, New Themes, New Perspectives
This collection of essays by a variety of scholars, compiled to celebrate the silver anniversary of The International Journal of Children’s Rights, builds on work already in the literature to reveal where we are now at and how the law concerned with children is reacting to new developments. New, or relatively new subject matter is explored, such as film classification, intersex genital mutilation, the right to development. Rights within the context of sport are given an airing. We are offered new perspectives on discipline, on the significance of “rights flowing downhill,” on the so-called “General Principles.“ The uses to which the CRC is put in legal reasoning in some legal systems is critically examined. Though not intended as an audit, the collection offers a fascinating image of where the field of children's right is at now, the progress that has been made, and what issues will require work in the future.
Sustaining Surveillance: The Importance of Information for Public Health
This book presents a comprehensive theory of the ethics and political philosophy of public health surveillance based on reciprocal obligations among surveillers, those under surveillance, and others potentially affected by surveillance practices. Public health surveillance aims to identify emerging health trends, population health trends, treatment efficacy, and methods of health promotion--all apparently laudatory goals. Nonetheless, as with anti-terrorism surveillance, public health surveillance raises complex questions about privacy, political liberty, and justice both of and in data use. Individuals and groups can be chilled in their personal lives, stigmatized or threatened, and used fo...
Privacy, Data Protection and Data-driven Technologies
This book brings together contributions from leading scholars in law and technology, analysing the privacy issues raised by new data-driven technologies. Highlighting the challenges that technology poses to existing European Union (EU) data protection laws, the book assesses whether current legal frameworks are fit for purpose, while maintaining a balance between supporting innovation and the protection of individual’s privacy. Data privacy issues range from targeted advertising and facial recognition, systems based on artificial intelligence (AI) and blockchain, and machine-to-machine (M2M) communication, to technologies that enable the detection of emotions and personal care robots. The book will be of interest to scholars, policymakers and practitioners working in the fields of law and technology, EU law and data protection.
