Research using genetic data raises various concerns relating to privacy protection. Many of these concerns can also apply to research that uses other personal data, but not with the same implications ...for failure. The norms of exclusivity associated with a private life go beyond the current legal concept of personal data to include genetic data that relates to multiple identifiable individuals simultaneously and anonymous data that could be associated with any number of individuals in different, but reasonably foreseeable, contexts. It is the possibilities and implications of association that are significant, and these possibilities can only be assessed if one considers the interpretive potential of data. They are missed if one fixates upon its interpretive pedigree or misunderstands the meaning and significance of identification. This book demonstrates how the public interest in research using genetic data might be reconciled with the public interest in proper privacy protection.
Perhaps no kind of regulation is more common or less useful than mandated disclosure-requiring one party to a transaction to give the other information. It is the iTunes terms you assent to, the ...doctor's consent form you sign, the pile of papers you get with your mortgage. Reading the terms, the form, and the papers is supposed to equip you to choose your purchase, your treatment, and your loan well.More Than You Wanted to Knowsurveys the evidence and finds that mandated disclosure rarely works. But how could it? Who reads these disclosures? Who understands them? Who uses them to make better choices?
Omri Ben-Shahar and Carl Schneider put the regulatory problem in human terms. Most people find disclosures complex, obscure, and dull. Most people make choices by stripping information away, not layering it on. Most people find they can safely ignore most disclosures and that they lack the literacy to analyze them anyway. And so many disclosures are mandated that nobody could heed them all. Nor can all this be changed by simpler forms in plainer English, since complex things cannot be made simple by better writing. Furthermore, disclosure is a lawmakers' panacea, so they keep issuing new mandates and expanding old ones, often instead of taking on the hard work of writing regulations with bite.
Timely and provocative,More Than You Wanted to Knowtakes on the form of regulation we encounter daily and asks why we must encounter it at all.
In 1991, Anita Hill's testimony during Clarence Thomas's Senate confirmation hearing brought the problem of sexual harassment to a public audience. Although widely believed by women, Hill was defamed ...by conservatives and Thomas was confirmed to the Supreme Court. The tainting of Hill and her testimony is part of a larger social history in which women find themselves caught up in a system that refuses to believe what they say. Hill's experience shows how a tainted witness is not who someone is, but what someone can become.
Why are women so often considered unreliable witnesses to their own experiences? How are women discredited in legal courts and in courts of public opinion? Why is women's testimony so often mired in controversies fueled by histories of slavery and colonialism? How do new feminist witnesses enter testimonial networks and disrupt doubt?Tainted Witnessexamines how gender, race, and doubt stick to women witnesses as their testimony circulates in search of an adequate witness. Judgment falls unequally upon women who bear witness, as well-known conflicts about testimonial authority in the late twentieth and early twenty-first centuries reveal. Women's testimonial accounts demonstrate both the symbolic potency of women's bodies and speech in the public sphere and the relative lack of institutional security and control to which they can lay claim. Each testimonial act follows in the wake of a long and invidious association of race and gender with lying that can be found to this day within legal courts and everyday practices of judgment, defining these locations as willfully unknowing and hostile to complex accounts of harm. Bringing together feminist, literary, and legal frameworks, Leigh Gilmore provides provocative readings of what happens when women's testimony is discredited. She demonstrates how testimony crosses jurisdictions, publics, and the unsteady line between truth and fiction in search of justice.
Sustainable Ocean Resource Governance offers perspectives on the legal interface between sustainable economic growth, effective marine resource management and environmental protection of the sea.
It is increasingly implausible to speak of a purely domestic abortion law, as the legal debates around the world draw on precedents and influences of different national and regional contexts. While ...the United States and Western Europe may have been the vanguard of abortion law reform in the latter half of the twentieth century, Central and South America are proving to be laboratories of thought and innovation in the twenty-first century, as are particular countries in Africa and Asia.Abortion Law in Transnational Perspectiveoffers a fresh look at significant transnational legal developments in recent years, examining key judicial decisions, constitutional texts, and regulatory reforms of abortion law in order to envision ways ahead.
The chapters investigate issues of access, rights, and justice, as well as social constructions of women, sexuality, and pregnancy, through different legal procedures and regimes. They address the promises and risks of using legal procedure to achieve reproductive justice from different national, regional, and international vantage points; how public and courtroom debates are framed within medical, religious, and human rights arguments; the meaning of different narratives that recur in abortion litigation and language; and how respect for women and prenatal life is expressed in various legal regimes. By exploring how legal actors advocate, regulate, and adjudicate the issue of abortion, this timely volume seeks to build on existing developments to bring about change of a larger order.
Contributors:Luis Roberto Barroso, Paola Bergallo, Rebecca J. Cook, Bernard M. Dickens, Joanna N. Erdman, Lisa M. Kelly, Adriana Lamačková, Julieta Lemaitre, Alejandro Madrazo, Charles G. Ngwena, Rachel Rebouché, Ruth Rubio-Marín, Sally Sheldon, Reva B. Siegel, Verónica Undurraga, Melissa Upreti.
This analysis of the law's approach to healthcare decision-making critiques its liberal foundations in respect of three categories of people: adults with capacity, adults without capacity and adults ...who are subject to mental health legislation. Focusing primarily on the law in England and Wales, the analysis also draws on the law in the United States, legal positions in Australia, Canada, Ireland, New Zealand and Scotland and on the human rights protections provided by the ECHR and the Convention on the Rights of Persons with Disabilities. Having identified the limitations of a legal view of autonomy as primarily a principle of non-interference, Mary Donnelly questions the effectiveness of capacity as a gatekeeper for the right of autonomy and advocates both an increased role for human rights in developing the conceptual basis for the law and the grounding of future legal developments in a close empirical interrogation of the law in practice.
The potential of the e-health revolution, increased data sharing, database linking, biobanks and new techniques such as geolocation and genomics to advance human health is immense. For the full ...potential to be realized, though, privacy and confidentiality will have to be dealt with carefully. Problematically, many conventional approaches to such pivotal matters as consent, identifiability, and safeguarding and security are inadequate. In many places, research is impeded by an overgrown thicket of laws, regulations, guidance and governance. The challenges are being heightened by the increasing use of biospecimens, and by the globalization of research in a world that has not globalized privacy protection. Drawing on examples from many developed countries and legal jurisdictions, the book critiques the issues, summarizes various ethics, policy, and legal positions (and revisions underway), describes innovative solutions, provides extensive references and suggests ways forward.
Responding to the alarm caused by recent hospital scandals and accounts of unintended harm to patients, this author draws on her experience of analyzing the health care systems of over a dozen ...countries and examines whether greater regulation has increased patient safety and health care quality. It will be of key interest to government actors, health care professionals and medico-legal scholars.
