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 rapidly changing field of genetics affects society through advances in health-care and through implications of genetic research. This study addresses the impacts of new genetic discoveries and technologies on different segments of today's society. The book begins with a chapter on genetic complexity, and subsequent chapters discuss moral and ethical questions arising from today's genetics from the perspectives of health care professionals, the media, the general public, special interest groups and commercial interests.

In its recent statement 'Sex Selection and Preimplantation Genetic Diagnosis', the Ethics Committee of the American Society of Reproductive Medicine concluded that preimplantation genetic diagnosis for sex selection for non-medical reasons should be discouraged because it poses a risk of unwarranted gender bias, social harm, and results in the diversion of medical resources from genuine medical need. We critically examine the arguments presented against sex selection using preimplantation genetic diagnosis. We argue that sex selection should be available, at (...) least within privately funded health care. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 12.1 (2002) 103-113 [Access article in PDF] Scope Note Update Searching Across Boundaries: National Information Resource on Ethics and Human Genetics* While indeed an historical moment, the announcement of the mapping of the human genome has been treated in the literature as a beginning—a new way to think about biology and the ways in which biological concepts are applied to medicine. (...) Issues of both Science and Nature magazines celebrated the event by establishing interdisciplinary websites where readers can access essays on aspects of genome mapping and directly link to databases to search for more information on the topics (IV. Genome Gateway 2001; The Human Genome 2001). Since 1994, the National Information Resource on Ethics and Human Genetics (NIREHG), a special project of the National Reference Center for Bioethics Literature (NRC), has been providing such an integrated information service on ethics and genetics. Designed to enable a wide range of users to go from annotated bibliographies (Scope Notes) and brief essays (called "enotes") to database searching, NIREHG fosters an interdisciplinary approach to research on ethics and genetics. Links are provided between and among Scope Notes and enotes to information maintained on the NIREHG site as well as to sources found throughout the Internet. In providing the following annotations added to NIREHG materials since 1997, the Kennedy Institute of Ethics Journal (in its online presence through Project Muse) becomes an additional forum for NIREHG links. "It is a rare and wonderful moment when success teaches us humility, and this, I argue, is precisely the moment at which we find ourselves at the end of the twentieth century" (IV. Keller 2000, p. 7). It is with both joy and humility that we celebrate the mapping of the human genome. [End Page 103] I. Genetic Testing Andrews, Lori B. Future Perfect: Confronting Decisions About Genetics. New York: Columbia University Press, 2001. 264 p.Noting the wide impact of genetic testing, Andrews discusses patient self concept, reproduction decisions, confidentiality, discriminations in health insurance and employment, the need for competent counseling, and the legal, ethical, and social regulations she deems important to help solve dilemmas arising from the tests and their ensuing ramifications. She describes three models, pointing out both advantages and problems: a medical model with physician gatekeepers, a public health model that could provide education as well some testing for those unable to afford tests, and a fundamental rights model that could give greater weight to individuals decisions about the use of health care services. The book has 85 pages of footnotes.American Society of Human Genetics. Social Issues Subcommittee on Familial Disclosure. Professional Disclosure of Familial Genetic Information. American Journal of Human Genetics 62 (2): 474-83, February 1998.The ASHG statement outlines points to consider: the general rule of confidentiality, exceptional circumstances that permit disclosure, and the ethical duty to inform patients about familial implications. Background discussion includes: ethical frameworks for disclosure of otherwise confidential information, the duty to warn under law, and international trends and positions.Boetzkes, Elisabeth. Genetic Knowledge and Third-Party Interests. Cambridge Quarterly of Healthcare Ethics 8 (4): 386-92, Summer 1999.Protection from the interests of insurers or prospective employers are discussed from the point of view of the ethical basis of the professional obligation to confidentiality as well as the right to privacy of those tested. However, the author supports family members, saying that "first-party resistance to disclosure may be overcome by weighty third-party claims."Chadwick, Ruth; Shickle, Darren; ten Have, Henk; and Wiesing, Urban, eds. The Ethics of Genetic Screening. Dordrecht, The Netherlands: Kluwer Academic Publishers, 1999. 255 p.Twenty-one chapters and 23 authors provide views of genetic testing/screening in different European countries and offer brief discussions of sociological perspectives, moral and philosophical issues, privacy, reconciling liberty and the common good, and questions raised in genetic testing of children.Clayton, Ellen Wright. Genetic Testing in Children. Journal of Medicine and Philosophy 22 (3): 233-51, June 1997.Clayton argues that there is room for... (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 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)

This chapter contains sections titled: Information Management: Confidentiality, Autonomy and Non‐Directiveness Predictive Genetic Testing Childhood Genetic Testing Genetic Screening Informed Consent to Screening Newborn Screening Carrier Screening Prenatal Screening Susceptibility Screening Further Information Management Goals of Genetic Screening: Public Health vs Individual Choice Conclusion References Further reading.

Developments in Non-Invasive Prenatal Testing (NIPT) and cell-free fetal DNA analysis raise the possibility that antenatal services may soon be able to support couples in non-invasively testing for, and diagnosing, an unprecedented range of genetic disorders and traits coded within their unborn child’s genome. Inevitably, this has prompted debate within the bioethics literature about what screening options should be offered to couples for the purpose of reproductive choice. In relation to this problem, the European Society of Human (...) class='Hi'>Genetics (ESHG) and American Society of Human Genetics (ASHG) tentatively recommend that any expansion of this type of screening, as facilitated by NIPT, should be limited to serious congenital and childhood disorders. In support of this recommendation, the ESHG and ASHG cite considerations of distribution justice. Notably, however, an account of justice in the organization and provision of this type of screening which might substantiate this recommendation has yet to be developed. This paper attempts to redress this oversight through an investigation of Norman Daniels’ theory of Just health: meeting health needs fairly. In line with this aim, the paper examines what special moral importance (for Just health) screening for the purpose of reproductive choice might have where concerning serious congenital and childhood disorders in particular. The paper concludes that screening for reproductive choice where concerning serious congenital and childhood disorders may be important for providing women with fair opportunity to protect their health (by either having or not having an affected child). (shrink)

In the near future developments in non-invasive prenatal testing may soon provide couples with the opportunity to test for and diagnose a much broader range of heritable and congenital conditions than has previously been possible. Inevitably, this has prompted much ethical debate on the possible implications of NIPT for providing couples with opportunities for reproductive choice by way of routine prenatal screening. In view of the possibility to test for a significantly broader range of genetic conditions with NIPT, the European (...) Society of Human Genetics and American Society of Human Genetics recommend that, pending further debate, prenatal screening for reproductive choice should only be offered where concerning serious congenital conditions and childhood disorders. In support of this recommendation, the ESHG and ASHG discuss a number of ethical issues on which they prompt further debate: the informational privacy of the future child, the trivialization of abortion, the risk of information overload, and issues of distributive justice. This paper responds to this call with further reflection on each ethical issue and how it relates to the moral justification of providing couples with opportunities for meaningful reproductive choice. The paper concludes that whilst there may be good reasons for qualifying the scope of any unsolicited prenatal screening offer to serious congenital conditions and childhood disorders, if prenatal screening is justified for providing couples with opportunities for meaningful reproductive choice, then health services may have obligations to empower couples with the same opportunity where concerning other conditions. (shrink)

This article reformulates Stephan Helmreich´s the ¨microbiomisation of race¨ as the historiality of otherness in the foundations of human microbiome science. Through the lens of my ethnographic fieldwork of a transnational community of microbiome scientists that conducted a landmark human microbiome research on indigenous microbes and its affiliated and first personalised microbiome initiative, the American Gut Project, I follow and trace the key actors, experimental systems and onto-epistemic claims in the emergence of human microbiome science a (...) decade ago. In doing so, I show the links between the reinscription of race, comparative research on the microbial genetic variation of human populations and the remining of bioprospected data for personalised medicine. In these unpredictable research movements, the microbiome of non-Western peoples and territories is much more than a side project or a specific approach within the field: it constitutes the nucleus of its experimental system, opening towards subsequent and cumulative research processes and knowledge production in human microbiome science. The article demonstrates that while human microbiome science is articulated upon the microbial ‘makeup’ of non-wester(nised) communities, societies, and locales, its results and therapeutics are only applicable to medical conditions affecting rich nations (i.e., inflammatory, autoimmune, and metabolic diseases). My reformulation of ¨microbiomisation of race¨ as the condition of possibility of human microbiome science reveals that its individual dimension is sustained by microbial DNA data from human populations through bioprospecting practices and gains meaning through personalised medicine initiatives, informal online networks of pseudoscientific and commodified microbial-related evidence. (shrink)

Our society currently faces many complex and perplexing issues related to biotechnology, including the need to define the outer boundaries of genetic research on human beings and the need to protect individual and group rights to human tissue and the knowledge gained from the study of that tissue. Scientists have increasingly become interested in studying so-called “population isolates” to discover the nature and location of genes that are unique to particular groups. Indigenous peoples are often targeted by (...) scientists because “the relative isolation of the communities ensures minimal gene flow.” Such studies raise a number of issues related to privacy rights, property rights, informed consent, and group rights versus individual rights. These issues recently came to light in a case brought by the Havasupai Tribe and its members over the use of blood samples, handprints, and genealogy information initially taken by researchers at Arizona State University for a diabetes project. These materials were then allegedly used by researchers at ASU and other institutions for a multitude of unauthorized purposes, including research into the frequency of mental health disorders and the origin of human populations. Consequently, the affected members sued for damages under several legal theories. However, underlying all of these claims was the allegation that this unauthorized use of genetic resources and data not only injured the individuals who gave samples, but also caused a collective harm to the Havasupai Tribe and the cultural and spiritual beliefs of its members. (shrink)

Objective: To determine whether bioethicists are distributed along a rural-to-urban continuum in a way that reflects potential need of those resources as determined by the general population, hospital facilities and hospital beds.Methods: US members of a large, multidisciplinary professional society, the American Society of Bioethics and Humanities , the US population, hospital facilities and hospital beds were classified across a four-tier rural-to-urban continuum. The proportion of each group in rural settings was compared with that in urban settings, (...) and odds ratios were calculated with 95% confidence intervals.Results: Although 91% of ASBH members live or work in urban settings, only 66% of the US population did so. In contrast, 2% of ASBH members live or work in rural settings compared with 13% of the population. ASBH members were 10.7 times as likely to be represented in urban than in rural settings when compared with the general population, 25.6 times and 6.9 times as likely with regard to hospital facilities and hospital beds, respectively.Conclusions: Using various comparisons it was found that ASBH members are under-represented in rural as compared with urban settings. Although not all bioethicists are ASBH members, these findings suggest that the availability of professional bioethical resources may be inadequate in rural America. The disparities that were found may have considerable effect on ethics scholarship, research, ethical committees and education, and adds to the argument that rural American communities are under-served. (shrink)

Published under the auspices of The World Institute for Advanced Phenomenological Research and Learning, 19 essays document the April 1998 international congress held at Harvard University. They ponder on such topics as the phenomenology of the experience of enchantment, Leonardo's enchantress, the ambiguous meaning of musical enchantment in Kant's Third Critique, art and the reenchantment of sensuous human activity, the creative voice, the allure of the Naza, Henri Matisse's early critical reception in New York, Zizek's sublimicist aesthetic of enchanted (...) fantasy, and enchantment in Baroque festive court performance in France. There is no subject index. Annotation copyrighted by Book News Inc., Portland, OR. (shrink)

At a meeting of the American Society for Value Inquiry in Chicago last spring, and again at a conference on biomedical ethics last fall in London, Ontario, David J. Roy, Head of the Institute for Medical Humanities, University of Montreal, described a developing situation in the biomedical technologies about which he and many of his colleagues in the profession share an enormous apprehension. The biomedical sciences have in their possession, in development, and on the drawing boards a technology (...) that has the potential of enabling us to alter much of what has to date been seen as fundamental givens and fixed points of the human situation, from the forms of human reproduction, through the frequency of distribution of various human characteristics, to those very characteristics themselves. His question , in the form of a plea, was this: it is becoming desperately urgent that scientists and technologists in these fields be given guidance about what they are doing; the sense is that what can be done ranges far beyond what should be done, and that the technological imperative (do what technology makes possible) and the epistemological imperative (find a use for what we know) are so strong that, in the absence of a normative consensus of what it is to be human, these sciences and technologies may well have a transforming impact upon a society that is not prepared to control them. When it becomes possible to eliminate the traditional and biological form of human reproduction, with the development of in vitro fertilization and the artificial placenta, shall we? When it becomes possible to eliminate deleterious genes from the human gene pool (or to limit their occurrence to the level of chance mutation), shall we? When it becomes possible to enable parents to select in advance characteristics of their offspring, from sex to hair and eye color, and perhaps even to influence the polygenic determinate and determinable characteristics of race, stature, aggressiveness, intelligence and talent, to the point that we can influence the distribution of propensities and abilities in the population to fit more closely the manpower needs of our society, shall we? Shall we breed astronauts, musicians.. (shrink)

Thesis (Master, Philosophy) -- Queen's University, 2008-09-18 17:05:35.143. -/- Human Genetic Enhancement (HGE) has the potential to provide great benefits to a large number of people in terms of alleviating inherited disease and disability and maximizing individual liberty. There are many arguments against research and application of this new technology based on a variety of grounds, including both deontological and consequentialist objections. In this thesis I examine arguments from both of these positions and argue that neither offers a satisfactory (...) justification for prohibiting research into HGE nor do they demonstrate that the application of the knowledge gained from such research is necessarily wrong. I also suggest that there is a strong argument in favor of HGE in that it may offer a way to reduce the amount of disadvantage currently present in our society as a result of genetic disease and disability by addressing the genetic causes of these conditions. Further, I argue that the pursuit of HGE is necessary in order to promote individual liberty and promote equality of opportunity. Finally, I argue that by examining principles that require us to promote individual liberty we can establish the categories of enhancements which we should publicly fund and those that should merely be permissible. (shrink)

The American Society for Bioethics and Humanities debated for several years about whether it should adopt positions and, if so, on what range of issues. The membership recently approved an amendment to its bylaws permitting the Society to adopt positions on matters related to academic freedom and professionalism but not on substantive moral and policy issues. This resolution is problematic for a number of reasons, including the lack of a categorical difference between these types of claims and (...) the Society's inability to speak on behalf of patients and research subjects. The implementation of the amendment also raises several issues. The Society will need to refrain from speaking too specifically and to articulate the responsibilities of its members. If the Society fails to address these concerns, it runs the risk of denigrating its public image and that of the profession. (shrink)

The advent of CRISPR has drastically moved the possibility of genetically modifying human genomes from the space of science fiction into nearby reality. Whether one considers the positive results f...

The idea that a world in which everyone was born “perfect” would be a world in which something valuable was missing often comes up in debates about the ethics of technologies of prenatal testing and preimplantation genetic diagnosis . This thought plays an important role in the “disability critique” of prenatal testing. However, the idea that human genetic variation is an important good with significant benefits for society at large is also embraced by a wide range of figures (...) writing in the bioethics literature, including some who are notoriously hostile to the idea that we should not select against disability. By developing a number of thought experiments wherein we are to contemplate increasing genetic diversity from a lower baseline in order to secure this value, I argue that this powerful intuition is more problematic than is generally recognized, especially where the price of diversity is the well-being of particular individuals. (shrink)

The relationship between biological and social scientists as regards the study of human traits and behavior has often been perceived in terms of mutual distrust, even antipathy. In the interwar period, population study seemed an area that might allow for closer relations between them—united as they were by a concern to improve the eugenic quality of populations. Yet these relations were in tension: by the early post-war era, social demographers were denigrating the contributions of biologists to the study of (...) population problems as embodying the elitist ideology of eugenics. In response to this loss of credibility, the eugenics movement pursued a simultaneous program of withdrawal and expansion: its leaders helped focus concern with biological quality onto the developing field of medical genetics, while at the same moment, extended their scope to improving the social quality of populations through birth control policies, guided by demography. While this approach maintained boundaries between the social and the biological, in the 1960s, a revitalized American Eugenics Society helped reunite leading demographers and geneticists. This paper will assess the reasons for this period of influence for eugenics, and explore its implications for the social and biological study of human populations. (shrink)

The Office of Inspector General, Department of Health and Human Services, has issued a proposed rule under section 5201 of the Omnibus Consolidated and Emergency Supplemental Appropriations Act for Fiscal Year 1999 that would provide a safe harbor from civil sanctions under section 1128A of the Social Security Act for independent dialysis facilities that pay premiums for Supplementary Medical Insurance or Medicare Supplemental Health Insurance Policies for financially needy Medicare beneficiaries with end-stage renal disease.End-stage renal disease is a chronic (...) disease that requires regular dialysis treatments and monitoring of laboratory values, diet and medication. ESRD patients suffer from irreversible renal failure, often accompanied by diabetes, anemia, hypertension and congestive heart failure. (shrink)

The Continuous Parameter Estimation Model is applied to develop individual genomic-level heritabilities for the latent hierarchical structure and developmental dynamics of Life History (LH) strategy LH strategies relate to the allocations of bioenergetic resources into different domains of fitness. LH has moderate to high population-level heritability in humans, both at the level of the high-order Super-K Factor and the lower-order factors, the K-Factor, Covitality Factor, and General Factor of Personality (GFP). Several important questions remain unexplored. We developed measures of genome-level (...) heritabilities employing an American sample of 316 monozygotic (MZ) and 274 dizygotic (DZ) twin dyads and a Swedish sample of 863 MZ and 475 DZ twin dyads. This novel heritability index measures individual genetic transmissibility, therefore opening new avenues for analyzing complex interactions among heritable traits inaccessible to standard structural equations methods. For these samples: (1) moderate to high heritability of factor loadings of Super-K on its lower-order factors is demonstrated, evidencing biological preparedness, genetic accommodation, and the gene-culture coevolution of biased epigenetic rules of development; (2) moderate to high heritability of the magnitudes of the effect of the higher-order factors upon their loadings on their constituent factors, evidencing genetic constraints upon phenotypic plasticity; and (3) that heritability of the LH factors, of factor loadings, and of the magnitudes of the correlations among factors are weaker among those with slower LH speeds, demonstrating that inter-individual variation in transmissibility is a function of individual socioecological selection pressures. (shrink)

Today it is possible to screen for mutated DNA sequences which do not induce any diseases but predispose to develop diseases under certain environmental condition. These latter disorders are called multifactorial since they result from the interplay of genetic and environmental factors. Among multifactorial disorders there are job-related diseases whose genetic component can be identified by genetic screening tests. The use of these tests to predict occupational disorders, to cut down on them, and to save costs—in particular for absenteeism, health (...) care, and lawsuits—is of interest to employers and insurers. As for employees, it could entail an extremely deep invasion of privacy, economic problems and, very likely, a jeopardy of the present position of the individual who may be screened even if his/her potential disease is never developed. (shrink)

Since the 1980s, society's wealthiest members have claimed an ever-expanding share of income and property. It has been a true counterrevolution, says Pierre Rosanvallon--the end of the age of growing equality launched by the American and French revolutions. And just as significant as the social and economic factors driving this contemporary inequality has been a loss of faith in the ideal of equality itself. An ambitious transatlantic history of the struggles that, for two centuries, put political and economic (...) equality at their heart, The Society of Equals calls for a new philosophy of social relations to reenergize egalitarian politics. For eighteenth-century revolutionaries, equality meant understanding human beings as fundamentally alike and then creating universal political and economic rights. Rosanvallon sees the roots of today's crisis in the period 1830-1900, when industrialized capitalism threatened to quash these aspirations. By the early twentieth century, progressive forces had begun to rectify some imbalances of the Gilded Age, and the modern welfare state gradually emerged from Depression-era reforms. But new economic shocks in the 1970s began a slide toward inequality that has only gained momentum in the decades since. There is no returning to the days of the redistributive welfare state, Rosanvallon says. Rather than resort to outdated notions of social solidarity, we must instead revitalize the idea of equality according to principles of singularity, reciprocity, and communality that more accurately reflect today's realities. (shrink)

ArgumentFor more than thirty years after World War II, the unconventional economist Kenneth E. Boulding was a fervent advocate of the integration of the social sciences. Building on common general principles from various fields, notably economics, political science, and sociology, Boulding claimed that an integrated social science in which mental images were recognized as the main determinant of human behavior would allow for a better understanding of society. Boulding's approach culminated in the social triangle, a view of (...) class='Hi'>society as comprised of three main social organizers – exchange, threat, and love – combined in varying proportions. According to this view, the problems of American society were caused by an unbalanced combination of these three organizers. The goal of integrated social scientific knowledge was therefore to help policy makers achieve the “right” proportions of exchange, threat, and love that would lead to social stabilization. Though he was hopeful that cross-disciplinary exchanges would overcome the shortcomings of too narrow specialization, Boulding found that rather than being the locus of a peaceful and mutually beneficial exchange, disciplinary boundaries were often the occasion of conflict and miscommunication. (shrink)

Discussions on the concept of Marifatullah as the foundation of belief hold a significant place in theology. There are different opinions among schools of theology regarding whether those who do not receive divine messages must know God. The majority of scholars belonging to the Mu'tazila and Māturīdī schools, including Imam Māturīdī, state that human beings must know God. Although al-Ashʿarī accepts that the most prominent obligatory duties are the methods of reasoning that lead to marifatullah, he states that responsibility (...) in this matter is formed by transmission. However, we can say that whether the human mind is sufficient to reach the knowledge of God, the method of reasoning has reached a different dimension today from the sciences of psychology, genetics, and neurobiology. This study explored whether individuals can achieve marifatullah from a holistic perspective. Whether human beings can be held responsible for this issue has been evaluated through the sciences of psychology, genetics, and neurobiology, and the opinions of schools of theology on this issue have been criticized. When we think in terms of Marifatullah, we can say that man’s psychological sense of obligation to adapt to society leaves him intellectually under the influence of society. In terms of genetic determinism, human personality, behavior, and intellectual adventure are completely determined by genes. Therefore, it is impossible for men to reach marifatullah in the context of their mental abilities. From an epigenetic perspective, we see that human thought structure, behavior, and personality are formed as a result of interactions with the environment. Serious hesitation arises in this idea in terms of intellect being a source of responsibility. Humans are genetically influenced by the environment and society, and they have a suitable nature for this, revealing that their genetic structure is open to environmental influences. In terms of brain plasticity, factors such as the society, environment, and family in which people live can change their brains and enable them to live accordingly. Although life adventures appear to be within the framework of social harmony, there must also be intellectual and religious harmony within social harmony. This reinforces the idea that individuals tend to align more with the thoughts and beliefs instilled by culture given the adaptable nature of the human brain influenced by cultural factors. When the views of the schools of theology are considered considering these evaluations, it becomes clear that the Mu'tazilites and Māturīdīs' belief that the source of the wujūb of marifatullah is intellect is at a point that needs to be reconsidered in terms of human biology and psychology. Although the Asharites emphasize human beings attaining knowledge of God through intellect, their focus on prophethood indicates that a revelation offer appears more accurate concerning human nature in the context of Marifatullah. (shrink)

Science fiction has been an inexhaustible source for the creation of technoscientific imaginary that has marked certain historical periods and influenced the production of subjectivity. This imaginary evokes complex ontological, epistemological, political, social, environmental and existential questions on the present and the future. The aim of this study was to identify and characterize the cultural productions accessed by the public to form an opinion about the genetic manipulation of human beings. A survey about sources of information that influence opinions (...) on the genetic manipulation of human beings was applied to 360 medical students (70.8% female). Movies were the most commonly mentioned source of information, followed by books, documentaries, news programs, television series, informational videos, soap operas and videogames. Science fiction was the most frequent genre and dystopian views of the future of humanity predominated. (shrink)

Ethics consultation has become an integral part of the fabric of U.S. health care delivery. This article summarizes the second edition of the Core Competencies for Health Care Ethics Consultation report of the American Society for Bioethics and Humanities. The core knowledge and skills competencies identified in the first edition of Core Competencies have been adopted by various ethics consultation services and education programs, providing evidence of their endorsement as health care ethics consultation (HCEC) standards. This revised report (...) was prompted by thinking in the field that has evolved since the original report. Patients, family members, and health care providers who encounter ethical questions or concerns that ethics consultants could help address deserve access to efficient, effective, and accountable HCEC services. All individuals providing such services should be held to the standards of competence and quality described in the revised report. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Community of “Neighbors”:A Baptist-Buddhist Reflects on the Common Ground of LoveJan WillisToday we are all aware that the concept of “race” is a mere construction. There is only one “race”: the human race; to think otherwise is like still believing that the earth is flat. But “racism” is a different matter. It exists as a system of beliefs and prejudices that people differ along biological and genetic lines (...) and that one’s own group is superior to another group. When these beliefs and prejudices are coupled with power—especially the power to negatively affect the lives of those perceived to be inferior—we have a serious problem. And no one should downplay or underestimate the harm that such an ideology inflicts upon everyone who participates in it. According to one African American professor of social work, “America’s history is inextricably bound to this racist ideology. From the codifying of slavery, to the belief in ‘Manifest Destiny,’ to the treatment of ‘illegal immigrants,’ many of America’s actions continue to conflict with its creed that ‘All men are created equal.’”1Over the past decade or so, I have written a number of pieces that focus upon racism in America and racism in so-called American Buddhism.2 Being African American myself, my reasons for this focus may perhaps be clear though not necessarily inevitable. I have written on a number of other topics: Buddhist philosophical discourses and life stories of Buddhist “saints,” for example. In my writings on racism, I have tried to communicate something of the emotional and psychic toll it takes to live in this country as a person of color. In a number of these writings, I have called myself a “Baptist-Buddhist,” and thus this is also one of my “dual belongings,” one of my “multiple identities.”When I speak of racism, I am not concerned with garnering pity, or playing the “race card” of guilt, or telling you, from some assumed position of superiority on the matter, that there is simply no way for you to understand this toll. I certainly cannot speak for all African Americans, or even for most of them. Early on in the process of writing this paper, I emailed Jung and Paul to say that I found the title of the panel both much too broad and much too narrow. “Too broad” because one person cannot possibly channel and/or verbalize the countless instances of suffering endured by African Americans (and more broadly, by persons of color) throughout space and over centuries in this country owing to slavery and its aftermath. And “too narrow” [End Page 97] because, ultimately, we want to do more than just rehash our many sufferings. We don’t want to wallow in victimhood. We want to move on—from the recognition of that immense suffering, seen and unseen—and to go out into the world and act to bring about social, economic, and ecological justice. That’s what we are called upon to do: to form a new community wherein there is compassion and caring for one another, where there is love and peace, nonviolence, reconciliation, and justice.So, even though I am quite frankly tired—as are so many people of color—of being the “token” African American who can add visible “diversity” to a group in order to show that it is now more “inclusive” than before, nevertheless, in this so-called postracial society where we have a black president and the demographic of “person of color” now comprises an actual majority of the United States’ population, I must still rise to say that, sadly, racism is not dead in this country! Its painful vestiges exist, and those vestiges are far from being either innocent or unharmful.I truly believe that—for African Americans, in particular—it is the trauma and the legacy of slavery that haunts us in the deepest recesses of our souls. It is hard to imagine what having been bartered and sold as though mere property does to a human being, what being dehumanized, infanticized, and divested of all rights and liberties does to one’s sense of self-worth and well-being. As... (shrink)

Clinical ethics consultation is largely outside the scope of regulation and oversight, despite its importance. For decades, the bioethics community has been unable to reach a consensus on whether there should be accountability in this work, as there is for other clinical activities that influence the care of patients. The American Society for Bioethics and Humanities, the primary society of bioethicists and scholars in the medical humanities and the organizational home for individuals who perform CEC in the (...) United States, has initiated a two‐step quality attestation process as a means to assess clinical ethics consultants and help identify individuals who are qualified to perform this role. This article describes the process. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Future Directions for Human Cloning by Embryo Splitting:After the HullabalooCynthia B. Cohen (bio)In October 1993, a paper entitled, "Experimental Cloning of Human Polyploid Embryos Using an Artificial Zona Pellucida," was presented at a joint meeting of the American Fertility Society and the Canadian Fertility and Andrology Society. Although it was awarded a prize, its authors, who are affiliated with George Washington University, decided against (...) calling a press conference to announce their findings. Word of their experiment soon leaked out, however, and the New York Times blazoned on its front page that human embryo cloning had been achieved. The story was accompanied by a diagram of cloning by nuclear transplantation.Newspapers and television networks around the world picked up the story and embellished it. The idea of unlimited, xeroxed copies of human beings gripped the public imagination. Wild scenarios of hundreds of Hitlers plotting to take over the world and of clones giving birth to their own twins enlivened media reports. Only gradually did it become clear that the term "polyploid" in the title of the paper referred to abnormal embryos that could never develop into living human beings and that "cloning" referred to embryo splitting or twinning, not to nuclear transplantation or the transfer of a donor nucleus into an enucleated egg. Once this sank into public consciousness, the "hullabaloo," as Dr. Howard W Jones, Jr., called it, died down.It left in its wake unanswered questions about the ethics of splitting embryos. During the height of the publicity given to the George Washington experiment, newspaper and TV stories had not delved in any depth into the ethical issues it raised. Ethicists, given limited time to discuss the ethical questions at stake, had been quoted in quick, simplistic responses. Some had offered little analysis of the rights and wrongs of embryo splitting, but, revealing tremendous creative talent, had spun out [End Page 187] imaginary and frightening applications of the procedure. This was a story essentially about ethics in which ethics was never really discussed.The National Advisory Board on Ethics in Reproduction* (NABER), an independent, multidisciplinary group that addresses ethical issues in modern reproductive science, technology, and care, became concerned about the sparsity of reflective ethical debate about embryo splitting. NABER's chair, Albert Jonsen, observed that "reporters phoning ethicists for comment and ethicists appearing on talk shows do not a debate make. Debate requires face to face (or at least essay to essay) argument among persons sharing the same information. This has yet to take place." Consequently, NABER decided to convene a workshop on human cloning by embryo splitting at the National Academy of Sciences in February 1994. The board invited participants who would provide a broad range of opinion about the ethical and public policy issues entailed by human embryo splitting. Embryologists, ethicists, reproductive biologists, public policy experts, staff from the National Institutes of Health (NIH), legal scholars, journalists, and infertility specialists were among those who participated. The feature articles in this issue of the Kennedy Institute of Ethics Journal derive from that workshop. Their authors were given free rein to take whatever stance they deemed ethically supportable.The first article is designed to provide some understanding of the science of human cloning as a basis for exploring the ethical issues raised by this set of techniques. Jacques Cohen, a leading reproductive embryologist, and Giles Tomkin, a science writer, both of Cornell University Medical School, explain, in a way that is clear to laypersons and biologists alike, the meaning, nature, and function of cloning. They discuss recent: advances in this area and offer an assessment of feasible uses of human cloning procedures, hoping to dispel what they view as mistaken fears about its future applications. Dr. Howard W Jones, Jr., a pioneer infertility specialist, briefly comments on Cohen and Tomkin's paper, pointing out that embryo splitting may not improve pregnancy results if genetic heterogeneity is required for successful embryo transfer and implantation.In the next article, three major ethical arguments against human cloning by embryo splitting are analyzed and rejected by Ruth Macklin, an expert in reproductive ethics from Albert Einstein College of Medicine. She finds the first argument, that the worth of individuals... (shrink)

Should significant enhancement of human capacities using genetic technologies become possible, each generation will have an unprecedented power over the next. I argue that it is implausible to leave decisions about the genetic traits of children entirely up to individuals and that communities will sometimes be justified in intervening to protect the interests of children against their parents. While a number of influential authors have suggested that the primary interest that the community should aim to protect is the child’s (...) right to “an open future”, when we examine closely what we desire for our children, it is clear that sometimes we have good reasons to try to restrict their opportunities to pursue dangerous, corrupting, or meaningless projects. Rather than maximise the openness of their future, then, we should strive to ensure that children have access to sufficient opportunities to make available a reasonable range of valuable life-choices. Importantly, both the assessment of what counts as a reasonable range and our judgements about which forms of life are valuable must inevitably make reference to substantive notions about the nature of human flourishing. A more appropriate formulation, then, of what should be protected by law and/or regulation, is the child’s right to a “decent future”, understood as a future which promises a reasonable range of opportunities to lead a life of human flourishing. I then proceed to highlight the challenge posed by the task of settling upon an idea of what counts as a decent future, for multicultural societies wherein ideas about the standards against which we should evaluate human flourishing are likely to be highly contested. (shrink)

The Office of Inspector General, Department of Health and Human Services, has issued a proposed rule under section 5201 of the Omnibus Consolidated and Emergency Supplemental Appropriations Act for Fiscal Year 1999 that would provide a safe harbor from civil sanctions under section 1128A of the Social Security Act for independent dialysis facilities that pay premiums for Supplementary Medical Insurance or Medicare Supplemental Health Insurance Policies for financially needy Medicare beneficiaries with end-stage renal disease.End-stage renal disease is a chronic (...) disease that requires regular dialysis treatments and monitoring of laboratory values, diet and medication. ESRD patients suffer from irreversible renal failure, often accompanied by diabetes, anemia, hypertension and congestive heart failure. (shrink)

WHAT COULD BE WRONG WITH SEEKING TO RESHAPE OURSELVES IN WAYS that we genuinely value? Jewish textual and cultural perspectives may add clarity and substance to the wider secular discussion of using genetic technologies for human enhancement. Judaism does not share the naturalism of Anglo-American bioethics; instead, it emphasizes covenantal responsibility for co-creation and stewardship of the body. Judaism tends to be more permissive about social uses of technology but more restrictive about personal aspirations and behavior. Enhancement technologies (...) threaten the moral universals of humility, personal responsibility, and social solidarity, which are embodied in Jewish tradition as duties to God, self, and others. The tradition demands that we seek self-perfection while humbly and cautiously acknowledging that we can never arrive at it nor even know exactly what we seek. (shrink)

In the late 1940s and early 1950s, the leaders of the Genetics Society of America struggled to find an appropriate group response to Trofim Lysenko’s scientific claims and the Soviet treatment of geneticists. Although some of the leaders of the GSA favored a swift, critical response, procedural and ideological obstacles prevented them from following this path. Concerned about establishing scientific orthodoxy on one hand and politicizing the content of their science on the other, these American geneticists drew (...) on democratic language and concepts as they engaged in this political issue. The relatively weak statements that did emerge from the GSA attracted little attention in the scientific or popular press. The intensely politicized atmosphere of American science complicated the GSA’s task, as domestic concerns about protecting democracy were beginning to constrain academic freedom. In the context of American Cold War culture, Lysenko became just one example of the dangers the Cold War world presented to scientific freedom. (shrink)

This paper explores the historical and social context of population genetic research conducted in India by focusing on a study by Reich et al which aimed to reconstruct Indian population history. The paper addresses two themes. First, it considers the agendas and modes of thinking about Indian populations and the caste system on which this study appears to be based. Second, it reflects on the medical implications of this study as they were presented in Reich et al's findings. I suggest (...) that while genetic mapping of Indian populations appears to have inherited many of the problems characteristic of population genetic research conducted in the USA and globally, the specificity of this research in India involves a peculiar interplay of the postcolonial pursuit of genomic sovereignty, desire by the Indian state to become a player in the global realm of biotechnology, and age-old discourses naturalising caste and regional differences. My argument is that, although the study has offered conceptual space for a wide range of interpretations, it has a strong potential not just for naturalising caste and regional differences in India, but also for pathologising them without necessarily bringing tangible healthcare benefits in the foreseeable future. (shrink)

ArgumentThis paper analyzes the research strategies of three different cases in the study of human genetics in Mexico – the work of Rubén Lisker in the 1960s, INMEGEN's mapping of Mexican genomic diversity between 2004 and 2009, and the analysis of Native American variation by Andrés Moreno and his colleagues in contemporary research. We make a distinction between an approach that incorporates multiple disciplinary resources into sampling design and interpretation (unpacking), from one that privileges pragmatic considerations over (...) more robust multidisciplinary analysis (flattening). These choices have consequences for social, demographic, and biomedical practices, and also for accounts of genetic variation in human populations. While the former strategyunpacksfine-grained genetic variation – favoring precision and realism, the latter tends toflattenindividual differences and historical depth in lieu of generalization. (shrink)

Human genetic enhancement, examined from the standpoint of the new field of political bioethics, displaces the age-old question of truth: What is human nature? This book displaces that question with another: What kind of human nature should humans want to create for themselves? To answer that question, this book answers two others: What constraints should limit the applications of rapidly developing biotechnologies? What could possibly form the basis for corresponding public policy in a democratic society? Benjamin (...) Gregg focuses on the distinctly political dimensions of human nature, where politics refers to competition among competing values on which to base public policy, legislation, and political culture. This book offers citizens of democratic communities a broad perspective on how they together might best approach urgent questions of how to deal with the socially and morally challenging potential for human genetic engineering. (shrink)

John C. Fletcher, a pioneer in the field of bioethics and friend and mentor to many generations of bioethicists, died tragically on May 27th at the age of 72. The son of an Episcopal priest from Bryan, TX, Fletcher graduated in 1953 with a degree in English Literature from the University of the South in Sewanee, TN. After completing a Masters in Divinity degree from the Virginia Theological Seminary and a stint as a Fulbright scholar at the University of Heidelberg (...) in 1956, he was ordained in the Episcopal Church and received a doctorate in Christian ethics from the Union Theological Seminary in New York. After ordination, Fletcher worked in various Episcopal churches and founded the Interfaith Metropolitan Theological Seminary in Washington, D.C. However, despite his religious faith, he was also a skeptic, and renounced his ordination in the mid-1990s due to his need for ?intellectual honesty.? Fletcher began his bioethics contributions in the early 1970's, when he became a founding Fellow of the Hastings Center and eventually the first Chief of the Bioethics Program at the Clinical Center of the National Institutes of Health. At the University of Virginia in Charlottesville, he was the Founding Director of the Center for Bioethics and a professor of biomedical ethics at the medical school, and became the Kornfeld Professor of Biomedical Ethics until his retirement in 1999. Fletcher was a prominent authority and voice in the national and international bioethical dialogue through his talks, his testimonies before scientific and congressional panels, his many articles, and his bioethical and religiously-orientated books, including: An Introduction to Clinical Ethics (1997), Coping with Genetic Disorders: a Guide for Clergy and Parents (1982), Ethics and Human Genetics: A Cross-Cultural Perspective (1989), which he wrote with sociologist Dorothy C. Wertz. Dr. Fletcher received the Lifetime Achievement Award from the American Society of Bioethics and Humanities in 2000. With the passing of Dr. John C. Fletcher, bioethics has lost one of its great voices, a dedicated teacher and mentor, and a friend and colleague to scholars in bioethics and a host of other fields. Below is a touching tribute from one of his former students. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:News from the President’s Council on BioethicsF. Daniel Davis (bio) and Diane M. Gianelli (bio)As most readers of this column already know, the President's Council on Bioethics went through a major transition during the past year when Leon Kass—in October 2005—handed the chairman's gavel over to Georgetown University's Edmund Pellegrino. Dr. Kass has remained on the Council as a member.1When the gavel change took place, the Council's phone started (...) ringing. Everyone wanted to know the same thing: What topics would the Council take up this term? Dr. Pellegrino's answer was always the same: The Council's agenda would be established through a consultative process with the members themselves and with an eye to those problems and controversies in bioethics to which we, as a body, can make a contribution.Taking its cue from the list of potential topics suggested by members, the Council—over the course of the next several meetings—listened to experts on such topics as children and bioethics (with a focus on children in clinical research), organ transplantation, and that oft-cited-but-hard-to-define concept, "human dignity."The latter topic entered the arena of discussion because it is a concept that is cited frequently in the bioethics literature, and it is also one that has figured prominently in Council discussions and documents. Although the concept is widely invoked, there is no universal understanding of what it means, and it is not easy to encapsulate into a one-size-fits-all definition. Indeed, some critics maintain that appeals to human dignity are fig leaves used to camouflage unconvincing arguments. So between December 2005 and April 2006, the Council devoted several sessions to various perspectives on "human dignity: its meaning, its foundations, and its relevance to bioethics." After hearing from James Childress, Patricia Churchland, Daniel Sulmasy, and Paul Weithman2 on the topic, the Council decided to issue a volume of approximately 20 essays, some by Council members and others by scholars from a variety of relevant disciplines.3 The volume is expected to encompass a broad array of opinion on the topic of human dignity and is scheduled to be published next spring."Children" were also the focus of several sessions during the past year. The Council's last report addressed care giving for the elderly.4 After it was issued, several members suggested it was time to focus on the youngest members of [End Page 375] society. The challenge, of course, was to find a topic that was both timely and relevant—and one about which the Council was uniquely qualified to make a contribution. A number of experts in a variety of related fields testified before the Council about possible issues it could explore: newborn screening for genetic disorders; decision-making standards for those who lack capacity; ethical issues in neonatal and pediatric intensive care; pharmacology and psychiatric disorders in children; and children and clinical research. In addition, a number of groups and individuals involved in related topics met with staff to discuss their interests and concerns.This exploratory engagement with facets of the broad topic of children and bioethics led the Council to focus, more narrowly, on a cluster of issues concerning newborn screening for genetic disorders—a topic on which it is likely that the Council will issue a white paper, possibly by next summer. The stimulus for this particular focus has been the American College of Medical Genetics's recommendation that all newborns in the U.S. be screened for a panel of 29 disorders.5 Currently, each state decides for its residents which conditions are subject to mandated screening, so it is possible to get early diagnoses of treatable disorders in one geographical area but not in another. Proponents of screening find the federal approach to mandated screening more equitable. Potential ethical problems, however, exist with the proposal. Some want to ensure that newborns are screened only for treatable conditions on grounds that it would be too burdensome to discover one is carrying the gene for a late-onset disease that cannot be prevented. Others want to make sure that insurance coverage for individuals and their families is... (shrink)

In the late 1940s and early 1950s, the leaders of the Genetics Society of America (GSA) struggled to find an appropriate group response to Trofim Lysenko's scientific claims and the Soviet treatment of geneticists. Although some of the leaders of the GSA favored a swift, critical response, procedural and ideological obstacles prevented them from following this path. Concerned about establishing scientific orthodoxy on one hand and politicizing the content of their science on the other, these American geneticists (...) drew on democratic language and concepts as they engaged in this political issue. The relatively weak statements that did emerge from the GSA attracted little attention in the scientific or popular press. The intensely politicized atmosphere of American science complicated the GSA's task, as domestic concerns about protecting democracy were beginning to constrain academic freedom. In the context of American Cold War culture, Lysenko became just one example of the dangers the Cold War world presented to scientific freedom. (shrink)

With the development of the Healthcare Ethics Consultant Certification offered through the American Society for Bioethics and Humanities, the practice of clinical ethics has taken a decisive step into professionalization. Like other clinical consulting services that have trod this path—chaplaincy, genetic counseling, social work, case management, and so on1—clinical ethics started with academic and fellowship training programs and has identified a set of standards of practice....