Tuberculosis was clearly one of the most predominant diseases of the early twentieth century. At this time, Americans involved in the eugenics movement grew increasingly interested in methods to prevent this disease's potential hereditary spread. To do so, as this essay examines, eugenicists' attempted to shift the accepted view that tuberculosis arose from infection and contagion to a view of its heritable nature. The methods that they employed to better understand the propagation and control of tuberculosis are also (...) discussed. Finally, the essay explores the interpretative analyses of data that the Eugenics Record Office used in an attempt to convince contemporaries of the hereditary transmission of tuberculosis. (shrink)

The ArgumentThe remarkable progress in modern genetic technology enables the identification of genes causing devastating diseases and thereby the development of tools for prenatal diagnosis and carrier detection. To implement the results of genetic research in traditional societies, where genetic diseases are more prevalent due to inbreeding, necessitates a culturally appropriate approach that also promotes traditional and societal values important to the relevant community. This paper presents our experience with implementing the results of modern genetic research among the (...) traditional community of the Negev Bedouin of Israel. Although the benefit of using those results for the prevention of genetic diseases seems obvious, successful implementation relies on a carefully designed educational program aimed at changing culturally related attitudes and perceptions. Such a program should attend to the needs of the community and be sensitive to its traditional values. (shrink)

The skin‐cancer‐prone hereditary disease xeroderma pigmentosum is typically characterized by defective nucleotide excision repair (NER) of DNA. However, since all subunits of the core basal transcription factor TFIIH are required for both RNA polymerase II basal transcription and NER, some mutations affecting genes that encode TFIIH subunits can result in clinical phenotypes associated with defective basal transcription. Among these is a syndrome called trichothiodystrophy (TTD) in which the prominent features are brittle hair and nails, and dry scaly skin. A (...) recent study provides dramatic support for the so‐called transcription hypothesis of TTD.(1) Specifically, several patients have been shown to carry a mutation in the XPD gene, which encodes a thermolabile form of XPD protein, resulting in loss of hair during febrile episodes. BioEssays 23:671–673, 2001. © 2001 John Wiley & Sons, Inc. (shrink)

Advances in genetic diagnostics lead to more patients being diagnosed with hereditary conditions. These findings are often relevant to patients’ relatives. For example, the success of targeted cancer prevention is dependent on effective disclosure to relatives at risk. Without clear information, individuals cannot take advantage of predictive testing and preventive measures. Against this background, we argue that healthcare professionals have a duty to make actionable genetic information available to their patients’ at-risk relatives. We do not try to settle the (...) difficult question of how this duty should be balanced against other duties, such as the duty of confidentiality and a possible duty not to know one’s genetic predisposition. Instead, we argue for the importance of recognising a general responsibility towards at-risk relatives, to be discharged as well as possible within the limits set by conflicting duties and practical considerations. According to a traditional and still dominant perspective, it is the patient’s duty to inform his or her relatives, while healthcare professionals are only obliged to support their patients in discharging this duty. We argue that this perspective is a mistake and an anomaly. Healthcare professionals do not have a duty to ensure that their patients promote the health of third parties. It is often effective and desirable to engage patients in disseminating information to their relatives. However, healthcare professionals should not thereby deflect their own moral responsibility. (shrink)

ObjectiveTo elucidate the clinical, radiologic characteristics of Leber’s hereditary optic neuropathy (LHON) associated with the other diseases.Materials and methodsClinical data were retrospectively collected from hospitalized patients with LHON associated with the other diseases at the Neuro-Ophthalmology Department at the Chinese People’s Liberation Army General Hospital (PLAGH) from December 2014 to October 2018.ResultsA total of 13 patients, 24 eyes (10 men and 3 women; mean age, 30.69 ± 12.76 years) with LHON mitochondrial DNA (mtDNA) mutations, were included in (...) the cohort. 14502(5)11778(4)11778 &11696(1)12811(1)11696(1)3460(1). One patient was positive for aquaporin-4 antibody (AQP4-Ab), and two were positive for myelin oligodendrocyte glycoprotein antibody (MOG-Ab). Three patients were associated with idiopathic optic neuritis (ON). Two patients were with compression optic neuropathy. Three patients were with the central nervous system (CNS) diseases. One patient was with proliferative diabetic retinopathy (PDR) and one with idiopathic orbital inflammatory syndrome (IOIS). At the onset, visual acuity (VA) in eighteen eyes was below 0.1, one eye was 0.5, five eyes were above 0.5, while VA in sixteen eyes was below a 0.1 outcome, three eyes experienced moderate vision loss. MRI images showed T2 lesions and enhancement in nine patients who received corticosteroids treatment; additional immune modulators treatment was performed on two patients. None of the patients had relapse during the follow-up time.ConclusionLeber’s hereditary optic neuropathy can be accompanied with multiple-related diseases, especially different subtypes of ON, which were also exhibited with IOIS and compression optic neuropathy for the first time in this cohort. This condition may be a distinct entity with an unusual clinical and therapeutic profile. (shrink)

Background and aims. In pediatrics receiving a diagnosis of a chronic condition is a matter that involves caregivers at first. Beyond the basic issues of caring for the physical body of the ill child, caregivers’ manners of facing and making sense of the disease orient and co-construct their children’s sensemaking processes of the disease itself. The aim of this article is to explore the experience of a rare chronic illness, Hereditary Angioedema (HAE), in pediatrics, from the caregivers’ perspective. (...) class='Hi'>Hereditary Angioedema is characterized by subcutaneous swellings that can involve the mucosal tissues of external as well as internal parts of the body, manifesting in a highly variable and unpredictable way in terms of localization, severity, and frequency. Materials and methods. Within a qualitatively-driven research design, we conducted a qualitative narrative semiotic analysis of n.28 mothers’ narratives on their children’s disease experience. Narratives were collected by an ad hoc interview on three domains of the disease experience: A. interpretation of the disease variability; B. dialogical processes; C. management of the disease. Subsequently, we executed a TwoStep cluster analysis for categorical data to detect cross-sectional profiles of the maternal sensemaking processes of the disease. Results. The coding grid was built analyzing the characteristic of the narrative links that orient the connection between the elements of the experience within each domain: A. the connection among events, for the domain of the interpretation of the disease variability; B. the connection between self and other, for the domain of the dialogue; C. the connection among sensemaking and actions, for the domain of the management of the disease. Results from cluster analysis show three narrative profiles: 1. adempitive; 2. reactive; 3. dynamic. Discussion. Profiles will be discussed in the light of the general conceptual framework of the Sense of Grip on the Disease (SoGoD) highlighting the importance of those sensemaking processes which, instead of relying on a coherent and close interpretation of the disease, are characterized by a degree of tolerance for the uncertainty and the unknowingly. (shrink)

In this paper we explore the rise of ‘the breast cancer gene’ as a field of medical, cultural and personal knowledge. We address its significance in the Norwegian public health care system in relation to so-called biological citizenship in this particular national context. One of our main findings is that, despite its claims as a measure for health and disease prevention, gaining access to medical knowledge of BRCA 1/2 breast cancer gene mutations can also produce severe instability in the individuals (...) and families affected. That is, although gene testing provides modern subjects with an opportunity to foresee their biological destiny and thereby become patients in waiting, it undoubtedly also comes with difficult existential dilemmas and choices, with implications that resonate beyond the individual and into different family and love relations. By elaborating on this finding we address the question of whether the empowerment slogan, which continues to be advocated through various health, BRCA and breast cancer discourses, reinforces a naïve or an idealized notion of the actively responsible patient: resourceful enough to seek out medical expertise and gain sufficient knowledge, on which to base informed decisions, thereby reducing the future risk of developing disease. In contrast to this ideal, our Norwegian informants tell a different story, in which there is no apparent heroic mastery of genetic fates, but rather a pragmatic attitude to dealing with a dire situation over which they have little control, despite having complied with medical advice through national guidelines and follow-up procedures for BRCA 1/2 carriers. In conclusion we claim that the sense of safety that gene testing and its associated medical solutions allegedly promise to provide proved illusory. Although BRCA-testing offers the potential for protection from adverse DNA-heritage, administered through possibilities for self-monitoring and self-management of the body, the feeling of ‘being in good health’ has hardly been reinforced by the emergence of gene technology. (shrink)

Significant breakthroughs in genetic research promoted by the human genome project, advances in molecular biology and new reproductive technologies have improved the understanding and the possibility of genetic interventions as a potential medication for diseases caused by differentiated disorders, especially those that originated in irregularities in individual genes. The progress achieved in contemporary studies has created the likelihood that the man has the technical capacity to modify the genes that will be transmitted to the next generations as well. These (...) are the so-called hereditary genetic modifications, i.e. any biomedical interventions which could be expected to transform the genome which a person could transfer to their offspring. The author analyses in this paper why even the hints of transformations of genes that will be passed on to future generations cause deep bioethical, theological, legal and political debates and controversies. He also believes that in the era of rapid strengthening of the social and technical and technological effects of science, it is very important that scientists, in their perceptions and insights, which particularly in the field of humanities, do not have the character of value beliefs, do not go below the achieved civilization standards of ethical and moral culture and to reflect on different themes with due care and awareness of the dilemmas that they can encounter in their professional work. An adequate interdisciplinary, multidisciplinary and pluriperspective approach, as well as the awareness of the essential compatibility of scientific freedom and responsibility, should ultimately result in a different and more sophisticated attitude of the scientists themselves to the possibilities of their own discipline and the significance of its effects. (shrink)

If a hereditary predisposition to colorectal cancer or breast cancer is diagnosed, most guidelines state that clinical geneticists should request index patients to inform their at-risk relatives about the existence of this condition in their family, thus enabling them to consider presymptomatic genetic testing. Those identified as mutation carriers can undertake strategies to reduce their risk of developing the disease or to facilitate early diagnosis. This procedure of informing relatives through the index patient has been criticised, as it results (...) in relatively few requests for genetic testing, conceivably because a certain number of relatives remain uninformed. This pilot study explored attitudes toward informing family members and relevant practices among clinical geneticists. In general, clinical geneticists consider it to be in the interests of family members to be informed and acknowledge that this goal is not accomplished by current procedures. The reasons given for maintaining present practices despite this include clinical ‘mores’, uncertainty about the legal right of doctors to inform family members themselves, and, importantly, a lack of resources. We discuss these reasons from an ethical point of view and conclude that they are partly uninformed and inconsistent. If informing relatives is considered to be in their best interests, clinical geneticists should consider informing relatives themselves. In the common situation in which index patients do not object to informing relatives, no legal obstacles prevent geneticists from doing so. An evaluation of these findings among professionals may lead to a more active approach in clinical practice. (shrink)

SummaryHeterozygous 4.1 hereditary elliptocytosis results from the absence of one haploid set of protein 4.1, a major component of the red cell skeleton. Two successive epidemiological investigations revealed fifteen probands in the French Northern Alps. The frequency of this disease seems to be very high in four small villages isolated in the Aravis mountains. The genealogical study shows that eleven probands share common ancestors who lived eight or ten generations ago in these villages. Thus there was probably a founder (...) effect from one pair of ancestors, strengthened by endogamy. In contrast, four probands originate from another area and are not genealogically related. Recent results in molecular genetics support the present data. (shrink)

Gene therapy and gene editing are revolutionising the treatment of genetic diseases, most notably haematological disorders. This paper evaluates the use of both techniques in hereditary blood disorders. Many studies have been conducted in this field, especially with gene therapy, with very promising results in diseases such as haemophilia, certain haemoglobinopathies and Fanconi anaemia. The application of these techniques in clinical practice and the foreseeable development of these approaches in the coming years suggest that it might be (...) useful to evaluate the results achieved thus far. It is also essential to reflect on the possible bioethical concerns raised by the use of both techniques, especially in terms of safety issues for patients, potential side effects, treatment duration, accessibility and cost of treatment, and the heritability of genetic changes produced if germline cells are used. (shrink)

What ethical justification can be found for informing a person that he or she will later develop a lethal disease for which no therapy is available? This question has been discussed during the past twenty years by specialists concerned with the prevention of Huntington's Disease, an incurable late-onset hereditary disorder. Many of them have played an active role in developing experimental testing programmes for at-risk persons. This paper is based on a corpus of 119 articles; it reviews the development (...) of their reflection and includes an outline of the ethical problems identified and the solutions adopted in pre-clinical protocols. Seen in a broader perspective, the experience of presymptomatic testing for Huntington's Disease has given medical geneticists the opportunity to clarify their ethical position in the as yet little explored field of predictive medicine. (shrink)

Since the human mitochondrial genome was characterised and sequenced in 1981(1), it has been viewed as the likely site of genetic diseases showing a maternal inheritance pattern and associated with defects of the respiratory chain, such as the mitochondrial myopathies (MMs)†(2). The properties that make it a candidate for the source of such conditions are that it encodes polypeptides involved in electron transport(3,4) and that it is maternally inherited(5). However, several of the mtDNA diseases only fulfill one or (...) other of these criteria: the first group of mtDNA diseases showed Only sporadic deletions(6,7), and the first point mutation in Leber's Hereditary Optic Neuropathy(8) (LHON) is not associated with a clear biochemical defect. Furthermore, it is now clear that both autosomal dominant(9) and probably recessive(10) nuclear genes can cause abnormalities of mtDNA. Each of these major groups will be considered in turn. (shrink)

The aim of this study was to describe the experiences of undergoing a presymptomatic genetic test for the hereditary and fatal Huntington’s disease, using a case study approach. The study was based on 18 interviews with a young woman and her husband from the decision to undergo the test, to receiving the results and trying to adapt to them, which were analysed using a life history approach. The findings show that the process of undergoing a presymptomatic test involves several (...) closely connected ethical and medical questions, such as the reason for the test, the consequences of the test results and how health-care services can be developed to support people in this situation. (shrink)

Aldehyde dehydrogenase 2 (ALDH2) deficiency constitutes one of the most common hereditary enzyme deficiencies, affecting 35% to 40% of East Asians and 8% of the world population. It causes the well-known Asian Alcohol Flush Syndrome, characterized by facial flushing, palpitation, tachycardia, nausea, and other unpleasant feelings when alcohol is consumed. It is also associated with a marked increase in the risk of a variety of serious disorders, including esophageal cancer and osteoporosis. Our recent studies with murine models have demonstrated (...) that a one-time administration of an adeno-associated virus (AAV) gene transfer vector expressing the human ALDH2 coding sequence (AAVrh.10hALDH2) will correct the deficiency state and prevent alcohol-induced abnormalities of the esophagus and bone. If successful in humans, such strategy would reduce the increased risk-associated disorders such as esophageal cancer and osteoporosis, but also prevent the Asian Alcohol Flush Syndrome. This treatment thus raises ethical concerns: although it would potentially prevent fatal disease, it could also allow affected individuals to drink alcohol without suffering the Asian Alcohol Flush Syndrome and, hence, potentially enable personal destructive behavior. Here we explore the ethical arguments against the development of a gene therapy for ALDH2 deficiency and we find them wanting. We contend that development of such treatments is ethically appropriate and should be part and parcel of the solutions offered against the condition. (shrink)

This paper first considers why it is important to give children genetic information about hereditary conditions in the family, which will go on to affect their lives in a salient way. If it is important to inform children that they are at risk for an adult-onset disease that exists in the family, why should they not also grow up knowing whether they actually carry the genetic mutation? Central to this discussion is the importance of the process of disclosure and (...) the environment in which genetic information is divulged. It is concluded that the reasons given for defending disclosure of genetic conditions in the family to children are also important reasons to cautiously defend predictive genetic testing of children for adult-onset diseases. (shrink)

What are the effects of our environment on human development and the next generation? Numerous studies have provided ample evidence that a healthy environment and lifestyle of the mother is important for her offspring. Biological mechanisms underlying these environmental influences have been proposed to involve alterations in the epigenome. Is there enough evidence to suggest a similar contribution from the part of the father? Animal models provide proof of a transgenerational epigenetic effect through the paternal germ line, but can this (...) be translated to humans? To date, literature on fathers is scarce. Human studies do not always incorporate appropriate tools to evaluate paternal influences or epigenetic effects. In reviewing the literature, I stress the need to explore and recognize paternal contributions to offspring's health within the Developmental Origins of Health and Disease hypothesis, and coin this new concept the Paternal Origins of Health and Disease paradigm. A better understanding of preconceptional origins of disease through the totality of paternal exposures, or the paternal exposome, will provide evidence-based public health recommendations for future fathers. A father's hereditary contribution exceeds that of his DNA sequence. The environment can regulate systems such as the sperm epigenome, which is inheritable as well and may steer the genome and health status of his offspring. We here suggest a new concept, the Paternal Origins of Health and Disease, as part of the DOHaD theory. (shrink)

BackgroundLimited research has been conducted on explanations and understandings of biobanking for future genomic research in African contexts with low literacy and limited healthcare access. We report on the findings of a sub-study on participant understanding embedded in a multi-disease community health screening and biobank platform study known as ‘Vukuzazi’ in rural KwaZulu-Natal, South Africa.MethodsSemi-structured interviews were conducted with research participants who had been invited to take part in the Vukuzazi study, including both participants and non-participants, and research staff that (...) worked on the study. The interviews were transcribed, and themes were identified from the interview transcripts, manually coded, and thematically analysed.ResultsThirty-nine individuals were interviewed. We found that the research team explained biobanking and future genomic research by describing how hereditary characteristics create similarities among individuals. However, recollection and understanding of this explanation seven months after participation was variable. The large volume of information about the Vukuzazi study objectives and procedures presented a challenge to participant recall. By the time of interviews, some participants recalled rudimentary facts about the genetic aspects of the study, but many expressed little to no interest in genetics and biobanking.ConclusionParticipant’s understanding of information related to genetics and biobanking provided during the consent process is affected by the volume of information as well as participant’s interest in the subject matter being discussed. We recommend that future studies undertaking biobanking and genomic research treat explanations of this kind of research to participants as an on-going process of communication between researchers, participants and the community and that explanatory imagery and video graphic storytelling should be incorporated into theses explanations as these have previously been found to facilitate understanding among those with low literacy levels. Studies should also avoid having broader research objectives as this can divert participant’s interest and therefore understanding of why their samples are being collected. (shrink)

The aim of this study was to describe the experiences of undergoing a presymptomatic genetic test for the hereditary and fatal Huntington’s disease, using a case study approach. The study was based on 18 interviews with a young woman and her husband from the decision to undergo the test, to receiving the results and trying to adapt to them, which were analysed using a life history approach. The findings show that the process of undergoing a presymptomatic test involves several (...) closely connected ethical and medical questions, such as the reason for the test, the consequences of the test results and how health-care services can be developed to support people in this situation. (shrink)

This paper argues that our modern concept of biological heredity was first clearly introduced in a theoretical and practical setting by the generation of French physicians that were active between 1810 and 1830. It describes how from a traditional focus on hereditary transmission of disease, influential French medical men like Esquirol, Fodéré, Piorry, Lévy, moved towards considering heredity a central concept for the conception of the human bodily frame, and its set of physical and moral dispositions. The notion of (...) heredity as a natural force, with a wide ranging capabilities of transmitting differentially both fundamental and accidental characters was generalized by that generation of physicians with the help of contemporary naturalists and physiologists. By 1830 the term hérédité was widespread, and it shared the explanatory and semantic qualities of traditional medical concepts like constitution and temperament. An analysis is given of the main developments that led to the conception of biological (including human) bodies as consisting of a layered, hierarchical organization of characters, differentially affected by the laws of conservation (Heredity) and change (Inneity, Variation). The mid-century work of the French physician Prosper Lucas, Traité Philosophique et Physiologique de L'Hérédité Naturelle, is shown to be the culmination of the efforts of several generations of French physicians towards having a feasible, complexly structured notion of how heredity works. (shrink)

The upheavals of late eighteenth century Europe encouraged people to demand greater liberties, including the freedom to explore the natural world, individually or as part of investigative associations. The Moravian Agricultural and Natural Science Society, organized by Christian Carl André, was one such group of keen practitioners of theoretical and applied scientific disciplines. Headquartered in the “Moravian Manchester” Brünn, the centre of the textile industry, society members debated the improvement of sheep wool to fulfil the needs of the Habsburg armies (...) fighting in the Napoleonic Wars. Wool, as the raw material of soldiers' clothing, could influence the war’s outcome. During the early nineteenth century, wool united politics, economics, and science in Brno, where breeders and natural scientists investigated the possibilities of increasing wool production. They regularly discussed how “climate” or “seed” characteristics influenced wool quality and quantity. Breeders and academics put their knowledge into immediate practice to create sheep with better wool traits through consanguineous matching of animals and artificial selection. This apparent disregard for the incest taboo, however, was viewed as violating natural laws and cultural norms. The debate intensified between 1817 and 1820, when a Hungarian veteran soldier, sheep breeder, and self-taught natural scientist, Imre Festetics, displayed his inbred Mimush sheep, which yielded wool extremely well suited for the fabrication of light but strong garments. Members of the Society questioned whether such “bastard sheep” would be prone to climatic degeneration, should be regarded as freaks of nature, or could be explained by natural laws. The exploration of inbreeding in sheep began to be distilled into hereditary principles that culminated in 1819 with Festetics’s “laws of organic functions” and “genetic laws of nature,” four decades before Gregor Johann Mendel’s seminal work on heredity in peas. (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)

Often, the behavior of animals can be better explained and predicted, it seems, if we ascribe the capacity to have beliefs, intentions, and concepts to them. Whether we really can do so, however, is a debated issue. Particularly, Donald Davidson maintains that there is no basis in fact for ascribing propositional attitudes or concepts to animals. I will consider his and rival views, such as Colin Allen's three-part approach, for determining whether animals possess concepts. To avoid pure theoretical debate, however, (...) I will test these criteria using characteristic examples from ethology that depict a broad range of animal behavior. This will allow us to detect a series of gradations in animals' capacities, in the course of which we can think over what would count for or against an attribution of concepts and propositional attitudes to them in each single case. Self-conceit is our natural hereditary disease. Of all creatures man is the most wretched and fragile, and at once the most supercilious. ... It is by this conceit that man arrogates to himself ... divine properties, that he segregates himself from the mass of other creatures and raises himself above them .. (shrink)

The advent of omic technologies and, more specifically, the progress made with specific second- and third-generation sequencing technologies, gives us the possibility of knowing the particular sequence of individual genomes at a relatively affordable cost. In the not too distant future, these sequencing technologies combined with specific functional analysis will be used, at a genomic level and with a much finer degree of detail than the old molecular diagnostic tests, to identify the diseases associated with each person’s genetic map. (...) New dilemmas in different contexts have emerged with the advent of these technologies. From a bioethical perspective, the problem is not rooted in detailed research on the human genome per se, but in the purpose that can be given to information derived from this type of scientific research, which could become a useful tool for selecting, rejecting and discriminating against persons, because they have a hereditary disease or the potential to develop specific diseases in the future. This article analyzes the relationship between the eugenic mentality, the concept of quality of life, and genomic molecular diagnosis, when applied to human embryos for the purpose of preventing their implantation. Such action threatens the very life and dignity of a human being in its early stages of development. (shrink)

Mitochondria are essential subcellular organelles containing an extranuclear genome (mtDNA). Mutations in mtDNA have recently been identified as causing a variety of human hereditary diseases. In most of these cases, the tissues of the affected individual contain a mixture of mutant and normal mtDNA, with this ratio determining the severity of symptoms. Stochastic factors alone have generally been believed to determine this ratio. Jenuth et al.(1), however, examining mice that contain a mixture of mtDNA types, show evidence of (...) strong selective forces at work in favoring one mtDNA variant over another in some tissues. (shrink)

The emergence of topics such as reprogenetics and genetic testing for hereditary diseases attests to the continued salience of Foucault's analyses of biopolitics. His various discussions pose at least two problems for contemporary appropriation of the work. First, it is unclear what the "life" on which biopolitics operates actually refers to.1 Second, it is unclear how biopolitics relates to the economy, either in the classical form of the family/household (oikos) or in the current form of neoliberalism.2 In what (...) follows, I argue, first, that modern biopolitics is marked less by the entry of biological life into the polis than by a new consideration of the form of life proper to humans. This is because Foucault's .. (shrink)

Eugenicists in the 1930s and 1940s emphasised our moral responsibilities to future generations and the importance of positively selecting traits that would benefit humanity. In 1935 Herbert Brewer recommended ‘Eutelegenesis’ so that that future generations are not only protected from hereditary disease but also become more intelligent and fraternal than us. The development of these techniques for human use and animal husbandry was the catalyst for the cross fertilization of moral ideas and the development of a critical procreative morality. (...) While eugenicists argued for a new critical morality, religious critics argued against artificial insemination because of its potential to damage important moral institutions. The tension between critical and conservative procreative morality is a feature of the contemporary debates about reproductive technologies. This and some of the other aspects of the early and contemporary debates about artificial insemination and reproductive technologies are discussed in this article. (shrink)

Consciousness. We have come to expect science to be able to explain all sorts of phenomena in the world (global warming, hereditary diseases, life – you name it). Consciousness is an anomaly in the success story of science for there is a real question whether science, in particular neuroscience, can explain much about what consciousness is. A good question to ask is how and to what extent consciousness resists scientific explanation. That might tell us something about what is (...) special about consciousness. (shrink)

Belief in destiny is one of the principles of faith. Although the belief in fate is not explicitly mentioned in the Qur’an, there are many verses that indicate this belief. There are many hadiths about fate that have reached us from the Prophet. Although there are schools that deny destiny, Ahl al-Sunnah schools Ash‘aris and Maturidis accept the existence of belief in destiny. The definitions of destiny of these schools are expressed with words that can be used interchangeably. However, fate (...) should not be evaluated in a single category. It also has varieties. If destiny is perceived as only one kind of Forced destiny, it is inevitable to cause misunderstandings. Forced fate; it is destiny that does not give freedom to beings; It happens with the knowledge, will, power and creation of Allah. Some destinies of inanimate substances, plants, animals and humans are of this type. Jabr and responsibility are incompatible. Although some actions take place in their own bodies, people are not responsible for their forced destiny. Man is a freely created being within certain limits. The ability of intellect, will, power, and carrying out actions has been granted to them. By using them, a person performs his acts of will, and as a result, he becomes responsible for his actions. Having free will and freedom distinguishes humans from other living things. Where there is no human freedom, there is no responsibility. Human life is not uniform, it is in a state of constant change and transformation. In addition to these two types of fate, there is also a type of fate that turns into willful fate, although it was forced in the beginning. In addition to this, there are some actions that start with the will of man and later turn into forced fate. There are also types of disability that we have examined in connection with the belief in destiny and its types. Allah has sent humans to the world to be tested. Illness and disability are also part of the test. Diseases; they may be due to genetic, environmental factors, and food-related. Congenital diseases and disabilities can sometimes cause the world test to be difficult. The biological rules set by Allah are also valid for humans. Genetic hereditary diseases and disabilities occur when the genes carried by the parents are passed on to the child. While some genes are recessive, some genes are dominant. Genes that cause hereditary diseases and disabilities show an uneven distribution depending on their geographical habitats, sharing the same environment in the historical process, and the extent of intermingling of their lineages through marriages. While recessive genes can be passed on from generation to generation, dominant genes that cause death generally do not have the opportunity to pass on to the next generation. In today’s context, the diagnosis of genetic diseases and disabilities is attainable, enabling the implementation of necessary precautions accordingly; furthermore, partial or even complete treatment opportunities can be available depending on the circumstances. In this respect, all of the congenital diseases and disabilities due to genes are a forced fate that is not in the hands of man. As for those diseases and disabilities for which treatment opportunities exist, they fall under the category of fate that transitions from forced fate to willful destiny. Some genetic diseases and disabilities of people may appear in later ages. However, non-genetic diseases and disabilities are also facts of life. Every individual can become ill and experience disability during certain periods of their life. Diseases and disabilities can occur with a number of factors that do not depend on an individual's will, actions, or behaviors. Such diseases are also within the scope of forced fate. A person can also be disabled due to one’s own mistakes and negligence. However, it is a behavior befitting a Muslim to be treated in cases of all kinds of diseases and disabilities. The treatment of diseases for which there is a cure is a willed destiny. Diseases and obstacles that cannot be cured are forced fate. (shrink)

This article is concerned with the question of how to argue about morality and ethics in relation to a severe and deadly hereditary disease. It is inspired by the uneasiness I have felt on a number of occasions when “right and wrong” is being discussed by persons at risk, professionals and in particular when discussed by outsiders. This task is not an easy one and the article tries to lay out more groundwork than it arrives at conclusions. Below follows (...) a brief introduction to my framework and some of the concepts that are important for my way of outlining the arguments that follow. Then I take a closer look at genetic knowledge, responsibility and decision making, because these seem to be important issues in my field of study. I have added ignorance to the list in order to discuss a further aspect of dealing with hereditary disease. Interestingly, ignorance (understood both as being ignorant of and ignoring) seems to be commonly applicable to describing persons living at risk for Huntington’s Disease (HD). So what does everyday conduct of life look like from an “ignorance” perspective? And how can we discuss and argue about morality and ethics taking these seemingly diverse ways of living at risk into account? Posing this question, I hope to contribute to new reflections on possibilities and constraints in people’s lives with HD as well as in research and to open up new ways of discussing “right and wrong”. (shrink)

Kin marriages have been a subject of literary, historical, sociological, religious, and medical studies from past to present. Such a marriage has been discussed within the science of fiqh in terms of religion. Ḥanafī and Mālikī mujtahids stated that this marriage is permissible. While Shāfiʿī and Ḥanbalī mujtahids did not recommend kin marriage by seeing it permissible. Based on the fundamental doctrines of Islamic law, they argued that marrying a foreign candidate is mustahabb and answered the related criticisms against their (...) fatwa. In scientific studies, genetic risks in kin marriages were found to be twice as high. Therefore, the kin marriage was not recommended and it is suggested that those who will marry with relatives should undergo carrier tests. In some contemporary religious studies, it has been argued that the families established by kin marriages are stronger, the genetic research does not have absolute precision, and it may be ideological in the form of weakening the family-society structure. Besides, the ijtihads distant to close kin marriage is weak in terms of evidence and opposing evidence has been put forward to defend kin marriage. On the other hand, in some sociological studies, it has been argued that kin marriage is predominantly caused by religion and that it wekaned the social solidairty. This study analyzes the classical and contemporary approaches to kin marriage in detail within the framework of thesis-antithesis in terms of fiqh, uṣūl al-fiqh, and evidence, and evaluates such studies from a fiqh point of view by including medical research results and some sociological studies on kin marriage. A generally accepted deterministic link cannot be established between kin marriage and genetic disorders. Because, the same risks are found in marriages with foreigners and also arise from harmful substance addiction. However, the genetic risk rate in marriage with close relatives is twice that of marriage with a foreign candidate. The least of the two possible losses is preferred. So it is very sensible that a marriage that is twice as likely to take such a risk should not be recommended by religion. Because, the main purpose of religion in marriage is to protect the generation and ensure its continuation. The fact that such a marriage is not religiously prohibited does not mean that it was recommended. Because it is left to individuals and public authority to limit the ibaha on the grounds of maṣlaḥa. On the grounds that the hereditary risk rate is high, kin marriage is not recommended in the fiqh and an effort has been made to prevent such a marriage from becoming widespread. Sociologically, marriages with a foreign candidate who is equivalent to a close relative are more appropriate in terms of strengthening the social organization. It is seen that Shafi'i and Hanbali ijtihad, which do not recommend close relatives marriage, are supported by current medical and genetic research. It is understood that the ijtihads that does not recommend marriage with close relatives is inaccurate in terms of evidence, and the views that argue that such marriages are stronger in terms of benefits are not in place. In general, it is seen that religion is distant from kin marriage, and such marriages are mostly caused by psychological, sociological, and cultural reasons. The fact that such marriages are common in areas belonging to the Shāfiʿī and Ḥanbalī schools that do not recommend marriage with close relatives, on the other hand, the fact that marriages between close relatives are less in Hanafi regions, which state that the same marriage is only permissible, supports this. In this respect, some claims arguing that such a marriage stems from religion based on the understandings that refer to that kin marriage is recommended by religion, are not accurate. For this reason, it is difficult to establish a connection between the disintegration of social unity, the spread of hereditary diseases, and the claims that religion recommends consanguineous marriage. Today, enlightening the religious aspect of kin marriage will be beneficial in protecting society against hereditary risks. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Transformative Journey of TransplantationValen KeeferThe moisture from the ocean floated effortlessly through the air as it glided over the rocky cliff. The steady stream of mist covered my face and frizzy hair with beaded water droplets. I had been sitting on a bench alone for hours admiring the Northern California coast at a magnificent overlook featuring a bird’s-eye view of the endless sea and campground I called home (...) for the past month. The stunning mountain landscape behind me, the soothing colors of the coastal shrubbery, and the smell of eucalyptus made for a trifecta of surreal beauty. The ocean disappeared from my view and I became engulfed in the precipitation and felt like I was suspended in a cloud. I was soaking in every moment as it was the last day of my solo RV trip.The fog slowly separated and exposed bits and pieces of the ocean again and then a breathtaking rainbow came into sight. Each end appeared to be touching either side of the campground like it was giving it a hug. I was eye-level with the center and highest point of the rainbow, arching above our home on wheels. I stood on the bench with my arms wide open, embracing nature and the gift of life in all its glory. This moment would not have possessed such deep meaning if it wasn’t for the journey that came before it—the transformative journey of transplantation.Some may think of transplantation as a singular event when in reality, it’s a lifelong journey that can start with a diagnosis many years prior. My transplant journey began when I was diagnosed with polycystic kidney disease (PKD) at 10-years-old. Being diagnosed with a hereditary disease that has deeply impacted multiple generations of our family and with no known treatment or cure was a lot to carry as a child.My youth was full of love from my parents and filled with illness and the limitations and long-term impacts of growing up with multiple chronic illnesses. My education on PKD was the brutal real-life experiences of enduring it firsthand—with no support groups, resources, or internet to seek answers. I always felt different during a time when you’d do anything to fit in. I couldn’t play sports and had to sit on the sidelines in gym class. I was often in the nurse’s office, hospital, or recovering from a surgery. I hid my scars and unattractive body while changing in gym class. Friendships were really hard. Relationships were even harder.Growing up with chronic illnesses takes away from the fun of dreaming. It’s like that bright future full of endless possibilities is blocked by a huge mountain you know you have to summit first with no supplies, no friends, and no paved path to follow.Complications from PKD followed me from high school right into college, when I spent almost a year in the hospital. Both of my kidneys were removed, I was on dialysis, had pancreatitis, received over 70 blood transfusions, survived an internal bleed, and was in dire need of a lifesaving kidney transplant.At 19-years-old, I was too sick to be placed on the transplant waiting list, but needed a kidney to survive. My parents were living at the Ronald McDonald House, wondering if they would be the next ones to lose their teenage daughter. A close family friend forever changed our lives when she restored my health by selflessly donating her kidney to me. While it was an arduous path to transplantation, in some ways, the journey was just beginning.Fifteen years following my kidney transplant and summiting what I thought was going to be the most challenging mountain of my health journey, I found myself back on death’s doorstep with another battle ahead. I was in need of a second miracle, this time a lifesaving liver transplant. It was PKD again. The bile ducts in my liver were so gnarly that they looked like limbs of an oak tree rather than the desired smooth straw-like appearance. Their malformations led to chronic liver infections and multiple sepsis... (shrink)

ART and, in particular, IVF and ICSI, are essentially a laboratory experiment, but which, due to its specificity, goes beyond the disciplinary boundaries, explicitly acquiring an ethical-axiological dimension in the interaction zone of the members of a particular community involved in child-bearing. At the same time, it is noted that the activity and choice of a way to solve problems with childbirth has a characteristic severity, due to the traditions and level of civil and social maturity of a country, due, (...) among other things, to the level and achievements of technical equipment in this industry of knowledge and practice. According to foreign studies, about half of all subfertile people in developed countries are trying to overcome their infertility with the help of medicine, and research data indicate that the proportion of such individuals is growing. The most difficult problems of reproduction are associated with low quality of oocytes or low ovarian reserve ; aspermia and deep teratozoospermia, can not give hope to a couple to have genetically related offspring. However, donor programs create additional opportunities for social motherhood / paternity. Donation of oocytes is found in ART programs at least 3 times more often than donation of spermatozoa. At the moment, donation of gametes and embryos raises a number of ethical, legal, medical and socio-psychological issues that require competent support from experts of a wide range of specialists, as well as competent, non-commercial, primarily due to the interaction between donors and recipients. The analysis of possible modifications of family and kinship ties is based on the idea of transforming social relations, in which assisted reproductive technologies play a fundamental role, building a system of “new kinship and new family.” By entering into the intimate process of the birth of life and acting as a regulator of the composition of participants in this process through the stimulation of responsibility to present and future relatives, reproductive technologies affect the initial moral requirements in the community, redefining universal values based on the specific situation. Scenarios of childbearing through ART with the involvement of additional participants are possible in the context of the legal field, but legally fixed anonymity of the donor leaves many unresolved issues related to the problems of hereditary diseases, genetic abnormalities and epigenetic changes; in addition, there is a problem associated with the possibility of unintentional incest, as well as the difficulties of the child’s self-identification and the closeness of his genealogy. Solutions to these issues are postponed until later, thereby initiating future dramatic situations, ethical conflicts and dilemmas with a poorly predictable positive outcome. (shrink)

In this review, we discuss how two evolutionarily conserved pathways at the interface of DNA replication and repair, template switching and break-induced replication, lead to the deleterious large-scale expansion of trinucleotide DNA repeats that cause numerous hereditary diseases. We highlight that these pathways, which originated in prokaryotes, may be subsequently hijacked to maintain long DNA microsatellites in eukaryotes. We suggest that the negative mutagenic outcomes of these pathways, exemplified by repeat expansion diseases, are likely outweighed by their (...) positive role in maintaining functional repetitive regions of the genome such as telomeres and centromeres. Break-induced replication and template switching are conserved mechanisms of replication fork restart. They do not cause microsatellite instability in prokaryotes, but promote repeat expansion in eukaryotes. We suggest that TS and BIR persisted in eukaryotes despite their mutagenic potential because they help maintain long repetitive telomeres and centromeres. (shrink)

An important historical relation that has hardly been addressed is the influence of Prosper Lucas's Treatise on Natural Inheritance on the development of Charles Darwin's concepts related to inheritance. In this article we trace this historical connection. Darwin read Lucas's Treatise in 1856. His reading coincided with many changes concerning his prior ideas on the transmission and expression of characters. We consider that this reading led him to propose a group of principles regarding prepotency, hereditary diseases, morbid tendencies (...) and atavism; following Lucas, he called these principles: laws of inheritance. (shrink)

In the future, the Human Genome Project could eventually open the way to perhaps the determination of the complete wiling diagram of the human brain. This kind of progress may move neuroscience forward into the next level of understanding of human neurophysiology, development and behavior. The next crucial step would be to know, exactly what are the function of this genes, and why its lack or alteration causes a certain disease. Although, genomic has in some way contributed to almost every (...) aspects of neurobiology, the results are both significant and troubling.One of the areas, where HGP will contribute to neuroscience is the mapping of qualitative or complex traits. Complex traits like appearence, intelligence and personality are likely to be affected by hundreds or thousands of different genes, rather than one or a few. On the other hand, the complex organisms are not just the simple result of the sum of their genes, nor do genes alone build the different part of organism or influence behaviour by themselves. In spite of the wide variety of misunderstanding, misinterpretation or possible misusing of these new genetic information, this sort of research may eventually lead to useful practical medical results for humans. This information can contribute to work out therapies to treat learning and memory disorders, neurological disorders like Alzheimer's disease, afflicting more and more people in an increasingly ageing population. Genetics believe, there are 3000 to 4000 hereditary diseases. Gene therapy could one day cure some of them, but only when all the details of their genetic basis are known. Biomedicine in the next century will probably have a completely new role in society based on the beginnings inherent in the HGP.There is a general agreement, that modern neuroscience raises important ethical concerns that not have been adequately addressed either by scientists themselves or by the bioethics community. Some scientists interpreted the rapid progress in neuroscience as additional conformation for a materialist account of human nature, resulting in an attack on traditional belief systems. There is a clear tension between the widely held believes and the intellectual views of many scientists. (shrink)

Versuche zur Geschlechtswahl bei der Befruchtung führten in jüngerer Zeit zu anwendbaren, wenngleich noch eingeschränkt erfolgssicheren Techniken. Deren ethische und rechtliche Bewertungen stehen im Mittelpunkt dieser Abhandlung. In Gesellschaften und Kulturen mit traditioneller Bevorzugung männlicher Nachkommenschaft gibt es einerseits ein starkes Interesse für die Geschlechtswahl, andererseits wird in einigen westlichen Ländern der vorgeburtlichen Geschlechtswahl sehr geringe praktische Bedeutung beigemessen. Dabei unterscheidet sich die Verfügbarkeit der entsprechenden reproduktionsmedizinischen Verfahren von freier Zugänglichkeit zu allen Methoden (Präimplantationsdiagnostik, Spermatozoentrennung usw.) des Fortpflanzungsmedizinmarkts (USA) bis (...) hin zu strenger Reglementierung (Deutschland). Es wird anhand der wissenschaftlichen Literatur der Frage nachgegangen, welche für die Begründung rechtlicher Regelung beachtlichen sozialen oder gesundheitlichen Gefährdungen durch präkonzeptionelle Geschlechtswahl verursacht werden könnten, und welche Gründe es andererseits für die Zulässigkeit sozial motivierter präkonzeptioneller Geschlechtswahl gibt. (shrink)

Die Entwicklung von Substitutionstherapien für Enzymdefekte hat für betroffene Patienten zu einer grundlegend verbesserten Prognose und Lebensqualität geführt, allerdings zu extrem hohen Behandlungskosten. Bei solchen rezessiv erblichen Krankheiten besteht ein hohes Risiko dafür, dass auch weitere Geschwister eines betroffenen Kindes in gleicher Weise behandlungsbedürftig werden.Vor dem Hintergrund der Debatte um Ressourcenallokationen im Gesundheitswesen drohen anlagetragende Elternpaare bzw. Schwangere unter Druck zu geraten, angesichts der absehbar hohen Behandlungskosten auf weitere Kinder zu verzichten bzw. eine Schwangerschaft mit einem betroffenen Feten abzubrechen. Nach (...) geltendem Strafrecht und unter dem individualethischen Aspekt der reproduktiven Freiheit kommt eine solche „ökonomische Indikation“ zum Schwangerschaftsabbruch bislang nicht in Betracht, da sich die medizinische Indikation allein an der Zumutbarkeit der Fortsetzung der Schwangerschaft für die Mutter bemisst. Sozialer Druck sowie insbesondere mögliche A-priori Leistungsausschlüsse durch private Versicherer könnten aber künftig die Entscheidungsautonomie von Eltern von Kindern mit behandelbaren Erbleiden untergraben. (shrink)

The hereditary neurodegenerative disease spinal muscular atrophy (SMA) with childhood onset is one of the most common genetic causes of infant mortality. The disease is characterized by selective loss of spinal cord motor neurons leading to muscle atrophy and is the result of mutations in the survival motor neuron (SMN) gene. The SMN protein has been implicated in diverse nuclear processes including splicing, ribosome formation and gene transcription. Even though the genetic basis of SMA is well understood, it is (...) not clear how defects in these ubiquitous processes result in motor neuron degeneration leaving other tissues unaffected. Recent evidence from animal and cell culture models of SMA points to roles for SMN in neurite outgrowth and axonal transport. Disruption of these functions might be particularly detrimental to motor neurons given their high metabolic demands and precise connectivity requirements, thus providing a possible explanation for the specificity of motor neuron susceptibility in SMA. Understanding the molecular mechanisms of SMN activity in neuronal processes may generate new targets for future therapeutic strategies. BioEssays 27:946–957, 2005. © 2005 Wiley Periodicals, Inc. (shrink)

Hirschsprung disease and the multiple endocrine neoplasia type 2 syndromes are hereditary disorders related to the abnormal migration, proliferation or survival of neural crest cells and their derivatives. Hirschsprung disease is a frequent disorder of the enteric nervous system, resulting in intestinal obstruction. The multiple endocrine neoplasia type 2 syndromes predispose to cancers of neural crest derivatives. Both diseases are associated with heterozygous mutations in the RET proto‐oncogene. RET encodes a transmembrane receptor tyrosine kinase expressed in neural crest (...) lineages and whose ligand, glial‐cell‐line‐derived neurotrophic factor, has been very recently identified. In vitro expression studies demonstrate that while Hirschsprung disease mutations result in loss of function of the mutant RET tyrosine kinase, multiple endocrine neoplasia type 2 mutations lead to its constitutive activation. Thus, the two ‘faces’ of RET, gain of function and loss of function, each lead to a different syndrome, respectively: multiple endocrine neoplasia type 2, a cancer syndrome, or Hirschsprung disease, a developmental defect. (shrink)

This article is a revised version of a talk given in lieu of the Ph.D. dissertation: "Huntington´s Disease in Everyday Life. Knowledge, Ignorance and Genetic Risk". The dissertation evolves around the analysis of modern living with risk for a late onset genetic disorder. Here, three aspects of everyday lives faced with Huntington´s Disease (HD) are discussed. First, HD is one aspect of everyday living along with a variety of other aspects. The importance of risk is analysed as personal and changing (...) in changing circumstances. Second, genetic knowledge and technology are not solid universals, but situated and changing, and of varying importance in lives at risk. Last, the ethical rationalities of everyday living, research and clinical practice concerned with a hereditary condition are discussed as complex and contradictory in and across structures of social practice. (shrink)

Hereditary breast and ovarian cancers are frequently attributed to germline mutations in the tumor suppressor genes BRCA1 and BRCA2. BRCA1/2 act to repair double‐strand breaks (DSBs) and suppress the demise of unstable replication forks. Our work elucidated a dynamic interplay between BRCA2 and the WRN DNA helicase/exonuclease defective in the premature aging disorder Werner syndrome. WRN and BRCA2 participate in complementary pathways to stabilize replication forks in cancer cells, allowing them to proliferate. Whether the functional overlap of WRN and (...) BRCA2 is relevant to replication at gaps between newly synthesized DNA fragments, protection of telomeres, and/or metabolism of secondary DNA structures remain to be determined. Advances in understanding the mechanisms elicited during replication stress have prompted the community to reconsider avenues for cancer therapy. Insights from studies of PARP or topoisomerase inhibitors provide working models for the investigation of WRN's mechanism of action. We discuss these topics, focusing on the implications of the WRN‐BRCA2 genetic interaction under conditions of replication stress. (shrink)

Recent developments in biotechnology and genetic research are raising complex ethical questions concerning the legitimate scope and limits of genetic intervention. As we begin to contemplate the possibility of intervening in the human genome to prevent diseases, we cannot help but feel that the human species might soon be able to take its biological evolution in its own hands. 'Playing God' is the metaphor commonly used for this self-transformation of the species, which, it seems, might soon be within our (...) grasp. In this important new book, Jurgen Habermas - the most influential philosopher and social thinker in Germany today - takes up the question of genetic engineering and its ethical implications and subjects it to careful philosophical scrutiny. His analysis is guided by the view that genetic manipulation is bound up with the identity and self-understanding of the species. We cannot rule out the possibility that knowledge of one's own hereditary factors may prove to be restrictive for the choice of an individual's way of life and may undermine the symmetrical relations between free and equal human beings. In the concluding chapter - which was delivered as a lecture on receiving the Peace Prize of the German Book Trade for 2001 - Habermas broadens the discussion to examine the tension between science and religion in the modern world, a tension which exploded, with such tragic violence, on September 11th. (shrink)

Recent developments in biotechnology and genetic research are raising complex ethical questions concerning the legitimate scope and limits of genetic intervention. As we begin to contemplate the possibility of intervening in the human genome to prevent diseases, we cannot help but feel that the human species might soon be able to take its biological evolution in its own hands. 'Playing God' is the metaphor commonly used for this self-transformation of the species, which, it seems, might soon be within our (...) grasp. In this important new book, Jurgen Habermas - the most influential philosopher and social thinker in Germany today - takes up the question of genetic engineering and its ethical implications and subjects it to careful philosophical scrutiny. His analysis is guided by the view that genetic manipulation is bound up with the identity and self-understanding of the species. We cannot rule out the possibility that knowledge of one's own hereditary factors may prove to be restrictive for the choice of an individual's way of life and may undermine the symmetrical relations between free and equal human beings. In the concluding chapter - which was delivered as a lecture on receiving the Peace Prize of the German Book Trade for 2001 - Habermas broadens the discussion to examine the tension between science and religion in the modern world, a tension which exploded, with such tragic violence, on September 11th. (shrink)

In recent years, the research participant’s family’s need, if not right, to know their disease risk has comprised a great deal of the genetic testing discourse. This most often arises in the context of clinical genetic tests for hereditary cancers, especially colorectal and breast cancer, and other genetic disorders where the presence of a genetic mutation greatly increases the likelihood of the disease’s manifestation. However, this discussion has not led to comprehensive or cohesive guidance for health care professionals or (...) patients. Indeed, various governmental and professional bodies run the gamut of possibilities, from no disclosure to family without the consent of the patient, to recognition that genetic risk information is important enough to the family to allow exception to traditional notions of confidentiality. (shrink)