Genetic discrimination is becoming an increasingly important problem in the United States. Information acquired from genetic tests has been used by insurance companies to reject applications for insurance policies and to refuse payment for the treatment of illnesses. Numerous states and the United States Congress have passed or are considering passage of laws that would forbid such use of genetic information by health insurance companies. Here we argue that much of this legislation (...) is severely flawed because of the difficulty in distinguishing genetic from nongenetic tests. In addition, barring the use by insurance companies of a genetic test but not a nongenetic test (conceivably for the same multifactorial disease) raises issues of fairness in health insurance. These arguments suggest that ultimately the problems arising from genetic discrimination cannot be solved by narrowly focused legislation but only by a modification of the entire health care system. (shrink)

This timely work brings together a group of the nation's leading experts in genetics, medicine, history of science, health, law, philosophy of science, and medical ethics to assess the current state of modern human genetics, and to begin to chart the legal and ethical guidelines needed to prevent the misuse of human genetics from leading to the abuse of human beings. The six sections of the book, read together, map the social policy con tours of modern human genetics. The first (...) part describes the science of the Human Genome Project. The second addresses specific social policy implications, including the relevance of recombinant DNA history, the eugenics legacy, military applications, and issues of race and class in the context of genetic discrimination. Broader philosophical issues, including reductionism and determinism, the concept of disease, and using germline gene therapy to "improve" human beings are discussed in the third part. (shrink)

It goes almost without saying that there are no academic bioethical debates that are unique to the United Kingdom. The debates in which U.K. bioethicists become involved take place in international journals and in books with a worldwide readership. The contributions of those from these shores are frequently made in response to work by academics from the United States, Australia, Scandinavia, and a whole host of other countries.

To what extent should parents be able to choose the kind of child they have? The unfortunate phrase 'designer baby' has become familiar in debates surrounding reproduction. As a reference to current possibilities the term is misleading, but the phrase may indicate a societal concern of some kind about control and choice in the course of reproduction. Typically, people can choose whether to have a child. They may also have an interest in choosing, to some extent, the conditions under which (...) they do so, such as whether they have a child with a serious disability or disease. The purpose of this book is to explore the difficult and controversial question of the appropriate ethical and legal extent of reproductive autonomy in this context. The book examines ethical, legal and public policy issues in prenatal screening, prenatal diagnosis (PND), selective abortion and preimplantation genetic diagnosis (PGD). It explores the ethics of these selection practices and the ability of current ethical guidelines and legal mechanisms, including the law on selective abortion and wrongful birth, to deal with advances in genetic and other knowledge in these areas. Unlike in the United States, in England the relevant law is not inherently rights-based, but the impact of the Human Rights Act 1998 inevitably raises questions about the proper scope of reproductive autonomy in this context. The implications of the analysis are considered for the development of relevant law, public policy and ethical guidelines and will be of interest to academics in medical law and ethics, health professionals, lawyers, those working on public policy and students with an interest in these issues. (shrink)

ABSTRACTSome people might argue that there are already too many different documents, guidelines, and regulations in bioethics. Some overlap with one another, some are advisory and lack legal force, others are legally binding in countries, and still others are directed at narrow topics within bioethics, such as HIV/AIDS and human genetics. As the latest document to enter the fray, the UNESCO Declaration has the widest scope of any previous document. It embraces not only research involving human beings, but addresses broader (...) concerns in medicine and healthcare. The UNESCO draft declaration has some minor weaknesses, but on the whole, the strengths outweigh the weaknesses. One weakness is that some items in the draft are stated in a way that is too restrictive, thereby appearing to rule out legitimate activities. A strength of the Declaration is that it is relatively brief, yet at the same time contains sufficient detail to make it something more than a rehearsal of mere pieties. As the most recent of the numerous bioethics and human rights documents, the UNESCO draft draws on many of the earlier documents and also includes some of the most recent thinking about ethical norms and obligations. Perhaps its greatest strength lies not in details of the principles or their implementation, but rather in its stature as an international declaration issued by a United Nations organization. (shrink)

Genetic discrimination is becoming an increasingly important problem in the United States. Information acquired from genetic tests has been used by insurance companies to reject applications for insurance policies and to refuse payment for the treatment of illnesses. Numerous states and the United States Congress have passed or are considering passage of laws that would forbid such use of genetic information by health insurance companies. Here we argue that much of this legislation (...) is severely flawed because of the difficulty in distinguishing genetic from nongenetic tests. In addition, barring the use by insurance companies of a genetic test but not a nongenetic test (conceivably for the same multifactorial disease) raises issues of fairness in health insurance. These arguments suggest that ultimately the problems arising from genetic discrimination cannot be solved by narrowly focused legislation but only by a modification of the entire health care system. (shrink)

Background Noninvasive prenatal testing (NIPT) designed to screen for fetal genetic conditions, is increasingly being implemented as a part of routine prenatal care screening in the United States (US). However, these advances in reproductive genetic technology necessitate empirical research on the ethical and social implications of NIPT among populations underrepresented in genetic research, particularly Black women with sickle cell disease (SCD).Methods Forty (N = 40) semi-structured interviews were conducted virtually with Black women in the US (...) (19 participants with SCD; 21 participants without SCD) from June 2021 to January 2022. We employed a qualitative approach to examine the study participants’ perceptions of the potential advancement of NIPT for screening SCD in the fetus. Data were analyzed using NVivo 12 qualitative software.Results The themes revealed the complexities involving the intersectional lived experiences of SCD, prenatal care, lack of synergy among health providers, and NIPT decision-making. The results further revealed that even when Black women have shared commonalities in their lived experiences while navigating SCD and motherhood, their perceptions of NIPT screening technologies are divergent.Conclusion Expanding the ethical discourse on the social implications of NIPT is critical to fully elucidate how Black women perceive NIPT’s utility, particularly as NIPT advances to screen for SCD in the fetus. Neglecting to include Black women with genetic conditions in empirical studies on NIPT may contribute to ongoing health inequities and limit and constrain reproductive choices among Black women with and without SCD. (shrink)

This paper evaluates the content of the syllabi of postgraduate courses on public health ethics within accredited schools and programs of public health in the United States in order to gain an awareness of the topics addressed within these courses. Methods: Data was gathered via the analysis of syllabi of courses on PHE. In 2012, information was requested by e-mail from the 48 schools and 86 PH programs accredited by the U.S. Council on Education for Public Health for (...) 2012. The “Epidemiology and PHE Syllabi” project of the University of Miami also was consulted. A table of topics was drawn up in order to carry out content analysis of the documents. Results: Data was obtained from 25 schools and 36 accredited programs ; 36 syllabi were gathered and 75 different topics were found. Of these, 38 topics were addressed in six or more syllabi and can be grouped as follows: foundations of PHE; autonomy and its limits; infectious disease control; justice; research ethics; health education and promotion; environmental and occupational health; screening; genetics; privacy and confidentiality; and community-based practice and vulnerable populations. Conclusions: The analyzed syllabi show high variability in curricular content. The debate with regard to whether a core curriculum on PHE should be established is ongoing. The results of this work might be of interest for schools and programs of PH in other countries or regions of the world in order to develop or ameliorate their own PHE syllabi. (shrink)

Society has historically not taken a benign view of genetic disease. The laws permitting sterilization of the mentally re tarded~ and those proscribing consanguineous marriages are but two examples. Indeed as far back as the 5th-10th centuries, B.C.E., consanguineous unions were outlawed (Leviticus XVIII, 6). Case law has traditionally tended toward the conservative. It is reactive rather than directive, exerting its influence only after an individual or group has sustained injury and brought suit. In contrast, state legislatures have not (...) been inhibited in enacting statutes. Many of their products can be characterized as hasty, unnecessary, ill-conceived, and based on the heart rather than the head. Moreover the lack of expert consultation sought has also been remarkable. One state legislature, for example, has advocated immunization for sickle cell anemia! Many others have enacted laws for the screening of inborn errors of metabolism, e.g., phenylketon uria, but have poorly defined the lines of responsibility to secure compliance. A spate of specific disease-related bills has emerged in the u.S. Congress, each seeking recognition and appropriations. Sickle cell anemia, hemophilia, Cooley's anemia and Tay-Sachs disease have been among the front-runners for support. Finally, in 1975, Congress has begun to examine an omnibus bill concerning all forms of genetic disease. The bill, termed the National Genetic Diseases Act is, however, still far from being enacted. (shrink)

The vast network of Drosophila geneticists spawned by Thomas Hunt Morgan's fly room in the early 20th century has justifiably received a significant amount of scholarly attention. However, most accounts of the history of Drosophila genetics focus heavily on the "boss and the boys," rather than the many other laboratory groups which also included large numbers of women. Using demographic information extracted from the Drosophila Information Service directories from 1934 to 1970, we offer a profile of the gendered division of (...) labor within Drosophila genetics in the United States during the middle decades of the 20th century. Our analysis of the gendered division of labor supports a reconsideration of laboratory practices as different forms of work. (shrink)

This paper discusses legal and ethical issues related to genetic screening. It is argued that persons identified with actual or perceived deleterious genetic markers are protected by the American with Disabilities Act of 1990 and the Civil Rights Act of 1991, if members of a protected group, regardless of whether or not they are currently ill. However, legislation may not protect all employees in all scenarios, in which case, ethical principles should guide decision-making. In doing so a model (...) of preventive ethics is proposed to better understand the multiple levels on which this issue resides. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Walking the Bodhisattva Path/Walking the Christ PathU.S. Conference of Catholic BishopsCatholics and Buddhists brought together by Dharma Realm Buddhist Association, the San Francisco Zen Center, and the United States Conference of Catholic Bishops (USCCB) met 20-23 March 2003 in the first of an anticipated series of four annual dialogues. Abbot Heng Lyu, the monks and nuns, and members of the Dharma Realm Buddhist Association hosted the dialogue (...) at the City of Ten Thousand Buddhas in Talmage, California. The community had transformed their Confucius Hall into a chapel, with a large, newly constructed wooden cross on a wall above an altar facing out from a raised platform, so the Catholic delegation would have a space for worship. A special poster announcing the theme of the conference, "Walking the Bodhisattva Path/Walking the Christ Path," showing a Buddhist dharma wheel at one foot of a bridge and a Celtic cross at the other foot, had been created by the hosting community.The daily schedule for the dialogue did not interfere with the monastic routine at the City of Ten Thousand Buddhas, which included early morning chanting (4:00-5:00 am), daily rituals in the Buddha Hall, and the single large meal for monastics before noon to which all participants were invited. Catholics and Buddhists meeting in the dialogue began each day with an optional forty-five minutes of quiet sitting together in the monastery meditation hall, each following their own form of meditation and prayer. There was a Eucharist on Friday and Saturday evenings for the Catholics and to which the Buddhists were invited, and additional meals of breakfast and supper throughout the meeting at the City's Jyun Kang Restaurant.Fourteen Buddhists and fourteen Catholics participated in the formal discussions. Each participant spoke on what it means to them to follow Christ or the way of the Bodhisattvas or enlightened beings. In addition to speaking, each participant distributed a short passage, usually from a traditional text, on this topic. Several passages from Master Dogen's Shobogenzo and the Gospel of John were among those shared by the group. Other passages shared were taken from the Avatamsaka Sutra and the Shurangama Sutra and from the other gospels and the writings of Zen master HakuinZenji, the Dalai Lama, Korean Zen Master I-sahn Hye-yeon, the teachings of Master [End Page 247] Hsuan Hua, Shantideva, Origen, St. Ignatius, St. Benedict, the author of The Cloud of Unknowing, St. John of the Cross, and Chiara Lubich. A minute of silence separated the fifteen-minute segments for each presentation. With so large a group, most of the time in the formal sessions involved listening to series of presentations; however, during discussion periods the participants asked several challenging questions of one another.Some participants noted the tension they felt between belonging to a particular religious group and the need to let go of any consequential narrowness. The goal of the discussion was to promote understanding of the differences and similarities between Christianity and Buddhism. At one point, the participants noted several concerns about mutual enrichment: whether Buddhist methods can be separated from Buddhism and Christian methods from Christianity, and what specific aspects of Christian practice truly enrich Buddhists and which Buddhist practices likewise enrich Christians. Several times participants discussed their understanding of terms such as transformation, grace, the incarnation and the passion of Jesus, discernment of spirits, prayer, Buddha-nature, and related terms. There was consensus that Buddhists and Catholics can practically help one another regarding mental cultivation and religious precepts. They expressed this consensus in their choice of the topic forthe next dialogue, "Transformation of Hearts and Minds: Chan/Zen-Catholic Approaches to Precepts."The group agreed to reconvene in 2004 to respond to six presentations, three from each side, on different aspects of this topic.Chairing the sessions were Rev. Heng Sure for the Dharma Realm Buddhist Association, Rev. Taigen Dan Leighton for the San Francisco Zen Center, and Bishop John Webster for the United States Conference of Catholic Bishops. Their three organizations are the sponsors of the Northern California Chan/Zen-Catholic Dialogue. Chan and Zen are respectively the Chinese and Japanese terms for the meditation school... (shrink)

During the 1920s and 1930s geneticist L. C. Dunn of Columbia University cautioned Americans against endorsing eugenic policies and called attention to eugenicists' less than rigorous practices. Then, from the mid-1940s to early 1950s he attacked scientific racism and Nazi Rassenhygiene by co-authoring Heredity, Race and Society with Theodosius Dobzhansky and collaborating with members of UNESCO on their international campaign against racism. Even though shaking the foundations of scientific discrimination was Dunn's primary concern during the interwar and post-World War II (...) years, his campaigns had ancillary consequences for the discipline. He contributed to the professionalization of genetics during the 1920s and 1930s and sought respectability for human genetics in the 1940s and 1950s. My article aims to elucidate the activist scientist's role in undermining scientific discrimination by exploring aspects of Dunn's scientific work and political activism from the 1920s to 1950s. Definitions are provided for scientific discrimination and activist scientist. (shrink)

The phenomenon of the New Genetics raises complex social problems, particularly those of privacy. This book offers ethical and legal perspectives on the questions of a right to know and not to know genetic information from the standpoint of individuals, their relatives, employers, insurers and the state. Graeme Laurie provides a unique definition of privacy, including a concept of property rights in the person, and argues for stronger legal protection of privacy in the shadow of developments in human genetics. (...) He challenges the role and the limits of established principles in medical law and ethics, including respect for patient autonomy and confidentiality. This book will interest lawyers, philosophers and doctors concerned both with genetic information and issues of privacy; it will also interest genetic counsellors, researchers, and policy makers worldwide for its practical stance on dilemmas in modern genetic medicine. (shrink)

The United States’ Genetic Information Nondiscrimination Act of 2008 was sweeping legislation intended to protect the privacy of genetic information and prevent discrimination based on genetic factors in health insurance and employment. It protects the genetic privacy of individuals in these contexts and limits the likelihood that genetic discrimination will occur. However, in the case of employment, it does so at the cost of safety, both to the individuals it is meant to protect (...) and to others. On occasion, adherence to the dictates of GINA could lead to serious and avoidable harm to many people. Odd as it may seem, then, there can be such a thing as justified genetic discrimination. There are times when knowledge of genetic factors and subsequent action overrides reasons against obtaining or using such information. Moreover, this knowledge can be obtained without violating one's genetic privacyx. (shrink)

Analysis and comparison of genetic screening programs shows that the extent of development of programs varies widely across Europe. Regional variations are due not only to genetic disease patterns but also reflect the novelty of genetic services. In most countries, the focus for genetic screening programs has been pregnant women and newborn children. Newborn children are screened only for disorders which are treatable. Prenatal screening when provided is for conditions for which termination may be offered. The (...) only population screening programs for adults are those for thalassaemia carrier status in Cyprus, Greece and Italy. Social responses to genetic screening range from acceptance to hostility. There is a fundamental tension between individual and communi ty in the debates in various European countries about implementation of screening programs. Opposition to genetic screening is frequently expressed in terms of arguments about "eugenics" with insufficient regard to the meaning of the term and its implications. Only a few countries have introduced explicit legislation on genetic screening. Legislation to address discrimination may provide more safeguards than legislation protecting genetic information itself. (shrink)

ABSTRACT Although a preference for sons is reportedly a universal phenomenon, in some Asian societies daughters are considered financial and cultural liabilities. Increasing availability of ultrasonography and amniocentesis has led to widespread gender screening and selective abortion of normal female foetuses in many countries, including India. Feminists have taken widely divergent positions on the morality of this practice. Feminists from India have strongly opposed it, considering it as a further disenfranchisement of females in their patriarchal society, and have agitated successfully (...) for legislative prohibitions. Libertarian feminists on the other hand, primarily from the United States, have argued that any prohibition of the use of this technology is a curtailment of a woman's reproductive choices and a violation of her right to make autonomous decisions regarding procreation. Using India as an illustrative case, this paper argues that in the context of what prevails in some societies, an ethical argument that hinges on the principle of autonomy as understood in the West can be problematic. Furthermore, a liberal theoretical assumption that it is always better to have more rather than fewer choices may not hold up well against the realities of life for such women. Although feminists have little disagreement concerning substantive matters, it is in the area of strategy that differences of opinion have arisen, their moral reasoning and responses shaped by the culture, ethnicity, class and race to which they belong. A view that a single ‘orthodox’ feminism of any variety can embody the aspiration of all women reverts to the problematic issues in the evolution of the rationalistic, individualistic, ‘male’ ethics against which women have consistently raised objections. (shrink)

Three recent reports on genetic screening published in the United Kingdom, Denmark and the Netherlands are discussed. Comparison of the Dutch report with the Danish and the Nuffield reports reveals that the Dutch report focuses on the aim of enlarging the scope for action, emphasising protection of autonomy and self-determination of the screenee more than the other two reports. The three reports have in common that the main concern is with concrete issue such as stigmatisation, discrimination, protection of (...) the private sphere and issues linked with labour and insurance. Some potential long term consequences, however, tend to be neglected or underestimated. These omissions are pointed out. (shrink)

The genetic testing and screening of children has been fraught with controversy since Robert Guthrie developed the bacterial inhibition assay to test for phenylketonuria and advocated for rapid uptake of universal newborn screening in the early 1960s. Today with fast and affordable mass screening of the whole genome on the horizon, the debate about when and in what scenarios children should undergo genetic testing and screening has gained renewed attention. United States professional guidelines — both the (...) American College of Medical Genetics /American Society of Human Genetics statement and the American Academy of Pediatrics Statement on the genetic testing of children and the new AAP and ACMG joint policy statement and technical report — as well as the old UK guidelines by the Working Part of the Clinical Genetics Society and the new United Kingdom guidelines by the British Society of Human Genetics all give the same answer: genetic testing and screening should only be done if it is in the child’s best interest. (shrink)

Prenatal screening and testing are preference‐based health care options. They are offered so that pregnant women and their partners can learn genetic information about the developing fetus. In this literature review, I summarize studies of women’s and their partners’ psychological responses to prenatal testing and screening. These studies investigate the experiences of pregnant women, largely in the United States, who have access to health care services. Although the results indicate that these women are receptive to prenatal testing (...) and screening and seem to have limited negative psychological consequences, pregnant women without access to these services are not represented and may have different experiences. With that caveat in mind, based on the evidence, women generally do well psychologically as they manage the options that arise for them in the prenatal context. (shrink)

As men and women increasingly share access to state power, there has been a question of whether women’s rising descriptive representation leads to substantive change, and a sizable body of literature suggests it does. As a mechanism for this effect, I theorize legislatures as gendered organizations that build gender into their institutional operation, as enmeshed in legislative committee systems. Using case studies of Germany, Sweden, and the United States, I examine 40 years of data collected on legislative committees (...) and memberships. This study reveals some similarities, where all committee systems emphasize gender-typed roles, particularly female legislators’ greater segregation into social issue committees. Yet, gender is constructed differentially across these organizations, and the nations vary in the gender structure of their committee systems, degree of gender segregation and typing, and gendered relations of power and prestige. Implications for integrating theories of gender as an institution, gendered organizations, and feminist institutionalism are discussed. (shrink)

Name der Zeitschrift: Journal of Ancient History Jahrgang: 5 Heft: 2 Seiten: 280-303.

In agriculture, the principle of coexistence refers to a condition where different primary production systems can exist in the vicinity of each other, and can be managed in such a way that they affect each other as little as possible. Coexistence policies aim to ensure that farmers are able to freely grow the crops they choose—be they genetically engineered (GE), non-GE conventional, or organic. In the United States (US), the issue of coexistence has very recently come into sharp (...) relief with the introduction of Roundup Ready® (RR) alfalfa, a landmark court decision in 2007 (Geertson v. Johanns), and subsequent governmental actions, including the first Environmental Impact Statement on a GE crop. By contrast, in 2003 the European Union (EU) created a policy to manage coexistence and to address economic harms that may be caused by contamination. We briefly review the EU framework as an instructive resource. This policy analysis then looks at the US organic industry and its standards with respect to GE before turning to the case of RR alfalfa. With a focus on the field trial stage and on environmental assessments prior to market approval, the case reveals numerous problems in the existing regulatory framework as it pertains to coexistence and prevention of contamination of organic products with GE material. The paper concludes with specific policy recommendations for creating a more robust coexistence policy in the US. (shrink)

Poorly understood, linked in complex ways to ideas about race and European identity, and the focus today of an ethically vexed and rapidly expanding testing industry, cystic fibrosis is a relatively common life-threatening genetic disorder in the United States, the United Kingdom, and the European Union. Many genetic diseases are invisible to the general public, but CF is a high-profile genetic disease, often characterized as a “white” disease though it occurs in many populations. Over (...) the last five years it has become the focus of genetic screening programs of many kinds, but especially for newborns, all over the world. CF is also a scientifically interesting genetic disease. By the simple if imperfect .. (shrink)

The use of preimplantation genetic diagnosis, the powerful technique employed during fertility treatment to select embryos based on their genes, is currently unregulated in the United States—unlike in nearly all other countries where PGD is available. Of course, the analytical quality of the genetic tests, the laboratories where they are performed, and the technicians who carry them out are subject to the Clinical Laboratory Improvement Amendment requirements. And as the Food and Drug Administration prepares to begin (...) regulating laboratory‐developed tests, including many genetic tests, the clinical validity of the tests may also need to be demonstrated. But neither CLIA nor the U.S. Food and Drug Administration is responsible for governing medical practice, and state law and the relevant medical associations have largely fallen silent on the questions of when and why PGD ought to be performed. The result of this regulatory lacuna is that while PGD was originally intended for screening embryos for severe heritable disorders, it is now also employed for a variety of more controversial purposes. (shrink)

Massively parallel sequencing, also known as next‐generation sequencing, has the potential to significantly improve newborn screening programs in the United States and around the world. Compared to genetic tests whose use is well established, sequencing allows for the analysis of large amounts of DNA, providing more comprehensive and rapid results at a lower cost. It is already being used in limited ways by some public health newborn screening laboratories in the United States and other countries—and (...) it is under study for broader and more widespread use, including as a core part of newborn screening programs. Sequencing technology has the potential to significantly improve these essential public health programs. For many of the conditions that newborns are already screened for, sequencing can return more specific and more sensitive results. The technology could also enable newborn screening programs to expand the list of rare pediatric conditions that they look for, thereby identifying more infants who can benefit from immediate care. (shrink)

Using samples from three diverse populations, we test evolutionary hypotheses regarding how people reason about the inheritance of various traits. First, we provide a framework for differentiat-ing the outputs of mechanisms that evolved for reasoning about variation within and between biological taxa and culturally evolved ethnic categories from a broader set of beliefs and categories that are the outputs of structured learning mechanisms. Second, we describe the results of a modified “switched-at-birth” vignette study that we administered among children and adults (...) in Puno, Yasawa, and adults in the United States. This protocol permits us to study perceptions of prenatal and social transmission pathways for various traits and to differentiate the latter into vertical versus horizontal cultural influence. These lines of evidence suggest that people use all three mechanisms to reason about the distribution of traits in the population. Participants at all three sites develop expectations that morphological traits are under prenatal influence, and that belief traits are more culturally influenced. On the other hand, each population holds culturally specific beliefs about the degree of social influence on non-morphological traits and about the degree of vertical transmission—with only participants in the United States expecting parents to have much social influence over their children. We reinterpret people's differentiation of trait transmission pathways in light of humans' evolutionary history as a cultural species. (shrink)

The least infringement principle has been widely endorsed by public health scholars. According to this principle, public health policies may infringe upon “general moral considerations” in order to achieve a public health goal, but if two policies provide the same public health benefit, then policymakers should choose the one that infringes least upon “general moral considerations.” General moral considerations can encompass a wide variety of goals, including fair distribution of burdens and benefits, protection of privacy and confidentiality, and respect for (...) autonomy.In this article, we argue that the Center for Disease Control and Prevention's 2006 HIV screening recommendations may violate the least infringement principle. This is a concern because, although not legally binding, the Recommendations appear to have already influenced state laws and will likely continue to do so as legislative proposals continue to be passed. At a minimum, therefore, the Recommendations have important implications for HIV screening within the United States. (shrink)

The fields of HIV care in pregnancy and reproductive genetics have always been ‘exceptional’ in that patients are highly concerned about the potential for stigma and the corresponding need for privacy and confidentiality. However, the two fields have diverged in how they have addressed these concerns. The systematic review analyzed 61 manuscripts for similarities and differences between the fields of HIV care in pregnancy and reproductive genetics in the United States, with respect to privacy, confidentiality, disclosure, and stigma. (...) The systematic review revealed that the field of HIV care in pregnancy has insufficiently addressed patient concerns about privacy, confidentiality, and stigma compared to the field of reproductive genetics. Failure to adequately protect confidentiality of HIV-positive patients, and failure to reduce stigma associated with HIV testing and treatment are deficiencies in the delivery of care to HIV-positive pregnant woman and barriers to reducing vertical transmission of HIV. Im.. (shrink)

The availability of new genetic testing technologies to identify individuals as at risk for a particular disease has inspired tremendous concern that individuals with gene mutations will soon be universally identified, for both insurance and employment purposes, as a genetic underclass. Scholarship in science and technology studies, however, suggests that understandings of genetic knowledge might be locally contingent, while research in comparative politics helps us understand how national context might play an important role in framing approaches to (...) the regulation of genetic information. What role does national context play in defining genetic risk and shaping approaches to the privacy of genetic information? Using data from interviews, document analysis, and ethnographic observation, the author follows debates among advocacy groups, insurers, and governments in the United States and Britain about the appropriate use of genetic information in insurance underwriting to understand how national context frames the definition of genetic risk as well as its regulation. (shrink)

Networks for the exchange and/or sharing of genetic data are developing in many countries. We focus here on the situations in the US and France. We highlight some recent and remarkable differences between these two countries concerning the mode of access to, and the storage and use of genetic data, particularly as concerns two-sided markets and dynamic consent or dynamic electronic informed consent. This brief overview suggests that, even though the organization and function of these two-sided markets remain (...) open to criticism, dynamic e-IC should be more widely used, especially in France, if only to determine its real effectiveness. (shrink)

Advance health care directives and informed consent remain the cornerstones of patients' right to self-determination regarding medical care and preferences at the end-of-life. However, the effectiveness and clinical applicability of advance health care directives to decision-making on the use of life support systems at the end-of-life is questionable. The Uniform Anatomical Gift Act (UAGA) has been revised in 2006 to permit the use of life support systems at or near death for the purpose of maximizing procurement opportunities of organs medically (...) suitable for transplantation. Some states have enacted the Revised UAGA (2006) and a few of those have included amendments while attempting to preserve the uniformity of the revised Act. Other states have introduced the Revised UAGA (2006) for legislation and remaining states are likely to follow soon. (shrink)

We may create a catch-22 so that only people who are unlikely to need health insurance can afford it.... Genetic risk testing is important because it exposes the logic of a system that provides access to health insurance to those least likely to need it.

We may create a catch-22 so that only people who are unlikely to need health insurance can afford it.... Genetic risk testing is important because it exposes the logic of a system that provides access to health insurance to those least likely to need it.

Historians have emphasized the appearance of a productive research program in genetics after 1910, and philosophers and biologists have considered endorsement of genetics as a progressive move, indeed as a starting point for modern experimental biology. These efforts focus on what biology had changed to. This paper examines the condition from which biology moved, stressing the way in which Americans held heredity and development as a natural, intimately intertwined couple. Heredity accounts for likenesses, development for variation, and the two act (...) together throughout an individual's life. This discussion establishes the antecedent conditions necessary to explain the split of genetics and embryology and addresses the reasons for the split. (shrink)