Audrey R. Chapman

The Truth of Truth Commissions: Comparative Lessons from Haiti, South Africa, and Guatemala

As the twenty-first century opens, many deeply divided societies are struggling to overcome a heritage of collective violence and severe human rights violations. The twentieth-century may be most remembered for its legacy of gross human rights violations and mass atrocities. Violent conflicts, massacres, and oppression by one group over another have torn apart the social fabric of countries in nearly every region of the world. The killing fields of Cambodia, South Africa’s brutal apartheid system, genocide in Rwanda and Burundi, and ethnic cleansing in the former Yugoslavia are

Practical and ethical considerations of noninvasive prenatal diagnosis.

CHROMOSOME ABNORMALITIES SUCH AS TRISOMY 21 (Down syndrome), other autosomal trisomies, sex chromosome abnormalities, and balanced and unbalanced translocations can be prenatally diagnosed. For many individuals, the availability of prenatal diagnosis removes the fear of having a child with a severe physical or mental disability. For chromosome abnormalities that are associated with significant morbidity and mortality, the public’s acceptance of prenatal diagnosis has been well established during the past 4 decades during which testing has been available. Current standards of care involve screening women to identify those at highest risk of having a fetus with a chromosome abnormality and then offering definitive diagnosis through the analysis of a chorionic villus sample or amniotic fluid cells. The American College of Obstetricians and Gynecologists recommends that all women be offered aneuploidy screening through various combinations of maternal serum tests and sonographic measurements. However, these screening tests are associated with relatively high false-positive rates and often involve multistep protocols that may take weeks to complete. Obtaining chorionic villus or amniocentesis specimens is expensive and requires an invasive procedure that carries a small risk to the fetus and the possibility of adverse maternal effects. Moreover, these invasive tests are usually not provided until late in the first trimester or second trimester. Amniocentesis and chorionic villus sampling have therefore imposed a rate-limiting step in the provision of prenatal diagnosis; in general only those patients at the highest risk of having a fetus with Down syndrome or another disorder of major clinical significance have been tested. For more than 30 years, these problems have spurred attempts to develop noninvasive prenatal diagnosis. The discovery of substantial amounts of conceptus-derived nucleic acids (DNA and RNA mostly from trophoblasts) in maternal blood has resulted in proof of principle and also in the development of noninvasive tests. Currently, it is possible to determine fetal sex, establish Rh genotype of the fetus, and diagnose genetic disorders or carrier status for paternally inherited mutations. A number of strategies have been proposed for noninvasive prenatal diagnosis for aneuploidy, including an RNA-based method for Down syndrome detection, which is expected to be commercially available within a year. The benefits of a noninvasive prenatal diagnosis are clear. It eliminates the dangers associated with invasive testing, and it allows for definitive diagnoses earlier in pregnancy, thus resulting in safer terminations of affected pregnancies, reduction of parental anxiety, and decreased medical costs. As a result, uptake of the testing is likely to be higher, which can translate into additional health and economic benefits for both individuals and, indirectly, society at large. The introduction of noninvasive prenatal diagnosis would require the ill-prepared medical system to change how patients are counseled and how cases are managed. Additionally, significant ethical issues are associated with noninvasive prenatal diagnosis. In this Commentary, we discuss these effects with a focus on the forthcoming introduction of noninvasive prenatal diagnosis for fetal Down syndrome.

Obstetricians and gynecologists' practice and opinions of expanded carrier testing and noninvasive prenatal testing

The objective of this study is to assess the opinions of Fellows of the American College of Obstetricians and Gynecologists on expanded carrier testing (molecular detection of >100 genetic diseases of variable severity) and noninvasive prenatal testing (NIPT).

Truth Commissions and Intergroup Forgiveness: The Case of the South African Truth and Reconciliation Commission

This article considers the experience of the South African Truth and Reconciliation Commission (TRC) in promoting intergroup forgiveness and reconciliation focusing on the participation of victims in the TRC process and their response. It utilizes a variety of sources of empirical data collected during a 6-year collaborative project between the Science and Human Rights Program of the American Association for the Advancement of Science and the Centre for the Studyof Violence and Reconciliation for which I served as the project director. The article analyzes transcripts of the TRC human rights violations hearings and amnesty hearings and follow-up focus groups with participants conducted as part of the project. These data show the limitations of the TRC in promoting forgiveness and reconciliation in a meaningful way. The TRC had difficulties in conceptualizing forgiveness and reconciliation on an intergroup level and concentrated instead on relationships between individual victims and perpetrators. Former v...

Distortions of sex ratios at birth in the United States; evidence for prenatal gender selection †

The normal male to female livebirth sex ratio ranges from 1.03 to 1.07. Higher ratios in China, India and Korea reflect prenatal sex selection. We reviewed sex ratios for US births to investigate potential prenatal sex selection.

Evaluating the First-in-Human Clinical Trial of a Human Embryonic Stem Cell-Based Therapy

Phase I clinical trials generally raise greater ethical and human protection challenges than later stage clinical trials, suggesting a need to proceed cautiously. This is particularly the case for Phase I trials with a novel therapy being tested in humans for the first time, usually termed first-in-human (FIH) trials. In January 2009, the Food and Drug Administration approved the Investigational New Drug application of Geron Corporation, a small California-based biopharmaceutical company, to initiate a clinical trial to assess GRNOPC1, a human embryonic stem cell–derived candidate therapy for severe spinal cord injuries. This article evaluates the ethical and human subject protection issues raised by the Geron FIH trial. It identifies problems with the approval process and with the conduct of the trial, and then recommends ways to improve review of future proposed trials with novel and high-risk therapies.

Towards an Understanding of the Right to Enjoy the Benefits of Scientific Progress and Its Applications

Both the Universal Declaration of Human Rights and the International Covenant on Economic, Social and Cultural Rights enumerate a right to the benefits of scientific progress, but science is rarely addressed through a human rights lens. Nor has the human rights community systematically addressed the requirements of this right. This article seeks to stimulate the process of conceptualizing the right by offering some initial thoughts. It first reviews the right to the benefits of scientific progress in international human rights law and its historical background. The article then defines the key terms of science, scientific progress, and access to the benefits of science. The next section considers the human rights principles relevant to a human rights approach to the benefits of science. The article then considers what it means to respect the freedom indispensable for scientific research. Three sections follow exploring the obligations to respect, to protect, and to fulfill in relationship to the conservation, development, and diffusion of science. The article goes on to explore the international components of the right. The final section is a brief conclusion.

GLOBALIZATION, HUMAN RIGHTS, AND THE SOCIAL DETERMINANTS OF HEALTH

Globalization, a process characterized by the growing interdependence of the worlds people, impacts health systems and the social determinants of health in ways that are detrimental to health equity. In a world in which there are few countervailing normative and policy approaches to the dominant neoliberal regime underpinning globalization, the human rights paradigm constitutes a widely shared foundation for challenging globalizations effects. The substantive rights enumerated in human rights instruments include the right to the highest attainable level of physical and mental health and others that are relevant to the determinants of health. The rights stipulated in these documents impose extensive legal obligations on states that have ratified these documents and confer health entitlements on their residents. Human rights norms have also inspired civil society efforts to improve access to essential medicines and medical services, particularly for HIV/AIDS. Nevertheless, many factors reduce the potential counterweight human rights might exert, including and specifically the nature of the human rights approach, weak political commitments to promoting and protecting health rights on the part of some states and their lack of institutional and economic resources to do so. Global economic markets and the relative power of global economic institutions are also shrinking national policy space. This article reviews the potential contributions and limitations of human rights to achieving greater equity in shaping the social determinants of health.

Noninvasive Prenatal Testing for Early Sex Identification: A Few Benefits and Many Concerns

A new technology, noninvasive prenatal testing (NIPT), can identify fetal sex early in pregnancy, five weeks after conception, with a high degree of accuracy through analysis of maternal blood plasma. This article considers the possibility that NIPT will encourage greater sex selection in developed countries and discusses the implications. Sex selection raises serious social and ethical issues unless it is done for medical reasons. The article also assesses options to discourage sex-selective abortions, including the effectiveness of potential legal measures.

What could a strengthened right to health bring to the post-2015 health development agenda?: interrogating the role of the minimum core concept in advancing essential global health needs

BackgroundGlobal health institutions increasingly recognize that the right to health should guide the formulation of replacement goals for the Millennium Development Goals, which expire in 2015. However, the right to health’s contribution is undercut by the principle of progressive realization, which links provision of health services to available resources, permitting states to deny even basic levels of health coverage domestically and allowing international assistance for health to remain entirely discretionary.DiscussionTo prevent progressive realization from undermining both domestic and international responsibilities towards health, international human rights law institutions developed the idea of non-derogable “minimum core” obligations to provide essential health services. While minimum core obligations have enjoyed some uptake in human rights practice and scholarship, their definition in international law fails to specify which health services should fall within their scope, or to specify wealthy country obligations to assist poorer countries. These definitional gaps undercut the capacity of minimum core obligations to protect essential health needs against inaction, austerity and illegitimate trade-offs in both domestic and global action. If the right to health is to effectively advance essential global health needs in these contexts, weaknesses within the minimum core concept must be resolved through innovative research on social, political and legal conceptualizations of essential health needs.SummaryWe believe that if the minimum core concept is strengthened in these ways, it will produce a more feasible and grounded conception of legally prioritized health needs that could assist in advancing health equity, including by providing a framework rooted in legal obligations to guide the formulation of new health development goals, providing a baseline of essential health services to be protected as a matter of right against governmental claims of scarcity and inadequate international assistance, and empowering civil society to claim fulfillment of their essential health needs from domestic and global decision-makers.