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PubMed1993

[Fiftieth anniversary of classical genetics of professor Noe (1943-1993)].

Fifty years ago, the author was a student of Dr Juan Noé's general biology course. Dr Noé, an italian physician and biologist, was the most outstanding european teacher in Chile during the first half of twentieth century (1912-1947) and was the founder of the "Instituto de Biología de la Universidad de Chile". In 1943 Dr Noé taught to the author the classical genetics of that age that included basic concepts of mendelian theory, evolution, comparative anatomy, cytogenetics, eugenics and normal and pathological inheritance. He also undertook controversial problems of those times such as eugenics, racism, humanism and the ambiguity about "inherited defects" associated to syphilis, alcoholism and tuberculosis. The author received a firm education on the history of biological sciences, mendelism, evolution and genetic etiology of classical hereditary diseases such as hemophilia, daltonism, Huntington chorea and muscular dystrophy. Furthermore, Noé made mention of the hereditary etiology of cancer in animals and human leukemias and of the concept of polygenic diseases as a consequence inheritance-environment interactions. The author concludes emphasizing the importance of basic and clinical education in the teaching of medical genetics.

Chile↗

PubMed1992

The stigma of disease: implications of genetic screening.

As the field of human genetics successfully continues to unravel the secrets of an individual's genetic makeup, the social processes of stigmatization and ostracism of those with "undesirable" traits have the potential to increase. An historical example that may shed light on the problems of applying genetic technology to disease prevention is the institution of quarantine. This essay discusses the concept of "quarantine mentality" and the desire for healthy society to separate itself from those labeled "ill" or abnormal, and addresses two episodes in American history when genetics was applied to the formulation of social policy toward the "diseased": the eugenics movement of the early 20th century and the early attempts of genetic screening programs for sickle cell anemia during the 1970s.

Anemia, Sickle Cell↗

PubMed1997

Population control I: Birth of an ideology.

Population control, as a major international development strategy, is a relatively recent phenomenon. However, its origins reach back to social currents in the 19th and early 20th centuries, culminating in an organized birth control movement in Europe and the United States. The conflicts and contradictions in that movement's history presage many of today's debates over population policy and women's rights. Eugenics had a deep influence on the U.S. birth control movement in the first half of the 20th century. After World War II private agencies and foundations played an important role in legitimizing population control as a way to secure Western control over Third World resources and stem political instability. In the late 1960s the U.S. government became a major funder of population control programs overseas and built multilateral support through establishment of the U.N. Fund for Population Activities. At the 1974 World Population Conference, Third World governments challenged the primacy of population control. While their critique led population agencies to change their strategies, population control remained a central component of international development and national security policies in the United States.

Eugenics↗

PubMed1986

Defining life: the ethical context for human quality questions.

The links between ethics, medicine and the law cannot readily produce appropriate criteria for human quality questions, largely because ethics are misconstrued where they are not excluded; but also because the science at issue is full of unknowns. The paper surveys issues in eugenics, abortion and euthanasia.

Abortion, Eugenic↗

PubMed1996

Legacy of German psychiatric genetics: hindsight is always 20/20.

The history of psychiatric genetics is informed by this paper, which serves to review the legacy of German psychiatric genetics and its antecedents during the twentieth century. It also serves as an introduction to two new annotated abstracts of basic research papers on family studies of schizophrenia by Ernst Rüdin in 1916 and by Bruno Schulz in 1932, submitted by Kenneth Kendler and Edith Zerbin-Rüdin, together with another paper by them describing the origin and activities of Rüdin's Munich School of Psychiatric Genetics (1917-1945). Our paper also introduces an invited critical summary of the work of Ernst Rüdin by his biographer Matthias M. Weber, a medical historian working in the Historical Archives of the Clinical Institute of the Max Planck Institute of Psychiatry in Munich. We raise a number of bioethical questions in the context of the uses and misuses made of genetic information in the service of the Nazi programs of eugenics, "euthanasia," and genocide.

Adolescent↗

PubMed1996

Ernst Rüdin, 1874-1952: a German psychiatrist and geneticist.

Ernst Rüdin (1874-1952) was one of the major representatives of German psychiatry, genetics, and eugenics in the first half of the twentieth century. Born in Switzerland, he was influenced early on by his brother-in-law Alfred Ploetz, who propagated the ideas of social Darwinism and "racial hygiene" in Germany after 1890. Rüdin began his career in psychiatry at Emil Kraepelin's clinic in Munich, where he developed the concept of "empirical genetic prognosis" of mental disorders. He published his first results on the genetics of schizophrenia in 1916. From 1917-1945 Rüdin was director of the Genealogical-Demographic Department at the German Institute for Psychiatric Research, which Kraepelin had founded. After a short interruption from 1925-1928, Rüdin returned to Munich and enlarged the department. After 1933 the National Socialist government and party endorsed Rüdin's work by supplying financial and manpower support. Nazi health policy required a scientific basis to justify its actions, and Rüdin's ideas corresponded partially with this kind of thinking. In 1934 he prepared the official commentary on the "Law for the Prevention of Genetically Diseased Offspring." The connections of Rüdin's department to National Socialism can be understood as one of the main reasons for the critical attitude towards psychiatric genetics in Germany after 1945.

Bioethics↗

PubMed2002

Ethical decision-making in prenatal diagnosis and termination of pregnancy: a qualitative survey among physicians and midwives.

OBJECTIVES: This study was aimed at exploring the conflicts and ethical problems experienced by professionals involved in prenatal diagnosis and termination of pregnancy (TOP) in order to improve the understanding of decision-making processes and medical practices in the field of prenatal diagnosis. METHODS: Qualitative study with in-depth tape-recorded interviews conducted in three tertiary care maternity units in France, between May 1999 and March 2000. All full-time obstetricians and half of the full-time midwives were contacted. Seventeen obstetricians and 30 midwives participated (three refusals, five missing). Interviews were transcribed and analysed successively by two different researchers. RESULTS: All respondents stated that prenatal diagnosis and TOP raised important ethical dilemmas, the most frequent being request for abortion in case of minor anomalies. They pointed out the inability of our society to appropriately care for disabled children and the risk of eugenic pressures. The decisions and practices in prenatal diagnosis should be debated throughout society. All respondents reported that their unit did not have protocols for deciding when a TOP was justifiable. The transmission of information to the women appeared to be a problematic area. Moral conflicts and emotional distress were frequently expressed, especially by midwives who mentioned the need for more discussions and support groups in their department. CONCLUSION: Health professionals involved in prenatal diagnosis face complex ethical dilemmas which raise important personal conflicts. A need for more resources for counselling women and for open debate about the consequences of the current practices clearly emerged.

Abortion, Eugenic↗

PubMed2007

Sample size determination for logistic regression revisited.

There is no consensus on the approach to compute the power and sample size with logistic regression. Some authors use the likelihood ratio test; some use the test on proportions; some suggest various approximations to handle the multivariate case. We advocate the use of the Wald test since the Z-score is routinely used for statistical significance testing of regression coefficients. The null-variance formula became popular from early studies, which contradicts modern software, which utilizes the method of maximum likelihood estimation (MLE), when the variance of the MLE is estimated at the MLE, not at the null. We derive general Wald-based power and sample size formulas for logistic regression and then apply them to binary exposure and confounder to obtain a closed-form expression. These formulas are applied to minimize the total sample size in a case-control study to achieve a given power by optimizing the ratio of controls to cases. Approximately, the optimal number of controls to cases is equal to the square root of the alternative odds ratio. Our sample size and power calculations can be carried out online at www.dartmouth.edu/ approximately eugened.

Clinical Trials as Topic↗

PubMed1983

A brief history of primary prevention in the twentieth century: 1908 to 1980.

While primary prevention is a much talked about and debated topic in contemporary psychology, it has a considerable history. This paper critically traces primary prevention, philosophy and practice, in the 20th century. Beginning with the mental hygiene movement (1908-1960), the paper progresses to examine the child guidance movement (1920-1955), the eugenics movement (1860-1955), the initial era of federal involvement (1930s, 1940s) as well as significant research, events, and legislation in the decades between 1950 and 1980. The paper concludes with a synopsis of the major themes revealed by the review and suggestions for future efforts in prevention.

Child Guidance Clinics↗

PubMed2003

Tissue typing for bone marrow transplantation: an ethical examination of some arguments concerning harm to the child.

Tissue typing (TT) is a recent and controversial scientific advance. Whilst its current applications can easily be described as pro-therapeutic and within the realms of preventative medicine, its specificity and potential are often characterized as the tip of the eugenic iceberg: undermining the very basis of individual autonomy and identity in an inevitable march towards the perfect society. In addition to arguments concerning societal harms flowing from TT, significant concerns have also been raised concerning harms to the future child born as a result. In the context of current legislation and policy, this article examines two aspects of arguments concerning harm to the future child: those relating to psychological harms, and those arguing that TT is contrary to the future child's best interests. The article examines the moral basis for arguments concerning harm to the future child. It proposes that arguments concerning psychological harm may overlook or minimise the potential benefits flowing from the broader social, familial context into which the child is born. These arguments may be countered, or at least balanced, by considering the future child in this context. In relation to arguments that TT is contrary to the future child's best interests, the paper examines a non-standard consideration of best interests. It argues that this standard should be used in considering whether or not TT for bone marrow transplant is harmful to the future child, thereby extending moral consideration of interests to intra-familial interests and outcomes. On this basis, it can be argued that TT is not contrary to the interests of the future child. The paper concludes by noting a potential tension between the first guiding principle of the Infertility Treatment Act 1995 (Vic) and the current Victorian policy on TT.

Bone Marrow Transplantation↗

PubMed2004

[On the cultural history of psychiatry].

About 1800, psychiatry was established as a medical discipline with special institutions (madhouses). Therefore, historiography of psychiatry focuses generally on the last 200 years. This contribution will also illustrate aspects of medical and cultural history, which nowadays are mostly supposed to be less important: the premodern concept of melancholy and hypochondria between humoral pathology, demonology, and psychology; the assessment of psychiatric illness as a "creative malady," even complementary to genius; the dialectics of psychiatric therapies between suppression and emancipation, which is especially prominent in the early nineteenth century in regard to "moral treatment" ( psychische Kur in German), a topic stressed vigorously by the "antipsychiatry" movement around 1970; the denunciation of patients and sections of the population by eugenics ( Rassenhygiene in German) and racism (especially toward the Jews) by psychiatrists. Finally, the miraculous mechanisms of mass hysteria of "normal" individuals are questioned.

Community Psychiatry↗

PubMed2002

[Victims of Nazi euthanasia, the so-called T4 action. First results of a project at the German Federal Archives to disclose records of killed patients].

In 1990, previously unknown documents dated from the Nazi era were found in Berlin. They had been preserved in the central archives of the Ministry for State Security (MfS), the secret service of the now former German Democratic Republic (GDR). Nearly 30,000 psychiatric patient files turned out to comprise the smaller part of the records of patients who had been murdered in the 1940/41 "T4 action". More than 70,000 patients of psychiatric asylums were killed by gas in this first campaign of extermination during Nazism, and their files were believed to have been lost. Based on a project to be funded by the German Research Association, this paper offers a brief survey of the developments in historical research about Nazi "euthanasia" and the theories interpreting historical information. The paper will also present a research project dedicated to the memory of the victims of the "T4 action" and to the rediscovered files now conserved in the German Federal Archives in Berlin. The aim is to offer a systematic analysis of 3,000 records in an effort to contribute to the perception of the victims as individuals. The analysis will also include an examination of the selection criteria stipulated by the Nazi psychiatrists (hereditary illness, incurability, and incapacity to work productively) to select patients for extermination. In this way, the decision-making process, criteria, and motives that led to the killing should become more clear. This empirical analysis will help to answer questions concerning the proportion of eugenic and economic motivations and the Nazi rationale behind the extermination campaigns. The project will build upon an earlier preliminary study of a nonrepresentative sample of 185 files. As a preliminary result, it can be said that most of the victims had been hospitalised over long terms and classified as schizophrenic or feeble-minded. A third of the patients killed were considered invalid and not working, and almost 50% were described as working "mechanically". Five per cent of the victims were working "productively".

Crime Victims↗

PubMed2002

[Werner Villinger and National Socialist medical crimes].

The biography of the psychiatrist and neurologist Werner Villinger reflects the ambivalence of the history of German psychiatry during the first half of the twentieth century. Politically committed to the national conservatives, he was attracted by many elements of National Socialist (Nazi) ideology. Still, he joined the party rather late and reluctantly. Villinger was a eugenist by firm conviction. While he still argued against hasty legal regulation of eugenic sterilisations in the Weimar Republic, he strongly moved for translating the law on preventing hereditarily ill progeny into reality in the institution of von Bodelschwingh in Bethel. Since 1941, Villinger, who had become a professor for psychiatry and neurology in Breslau in the meantime, acted as an expert in the framework of the National Socialist "euthanasia" programme. At the same time, however, he supported the quiet diplomacy of Rev. von Bodelschwingh in his attempt to terminate the mass murder. Villinger was also involved in criminal experiments with human beings. After 1945, he successfully continued his career in the Federal Republic of Germany. He never confronted his past during the Third Reich.

Ethics, Medical↗

PubMed2002

[Hermann Simon--reformer of psychiatry, social Darwinist, and National Socialist?].

Hermann Simon (1867-1947) was shaped in his psychiatric thinking and views of society by the German empire. He showed a strongly conservative attitude and thought in ethnic-nationalistic terms. Beginning in 1905 and drawing on practical experience, he developed the concept of a "more active therapy." Simon perceived patients in a holistic way, regarding them not so much as sick people but as fellow men. He believed in the ability of a healthy personality to practice responsible and "well ordered self determination." Thus he defined the role of the doctor in a new way. Within Germany as well as internationally, active therapy was well-received, especially because of its positive effect on the atmosphere within asylums. In the context of reform of so-called open care during the Weimar epoch, Simon's approach was perceived in a new way because it allowed individual views of each patient, enabling assessment of the ability to work and chances for release. Simon himself set his concept in a "biological" and psychological context, based on his own biologistic and social Darwinistic world view. This view was open for eugenic, racial hygienic concepts, and fundamental criticism of welfare policy. It was only a short step from this conservative tenor, understanding of the state, and biologistic thinking to his open acclaim of Hitler and National Socialist (Nazi) racist policy.

Eugenics↗

PubMed2006

Deafness, genetics and dysgenics.

It has been argued by some authors that our reaction to deaf parents who choose deafness for their children ought to be compassion, not condemnation. Although I agree with the reasoning proposed I suggest that this practice could be regarded as unethical. In this article, I shall use the term "dysgenic" as a culturally imposed genetic selection not to achieve any improvement of the human person but to select genetic traits that are commonly accepted as a disabling condition by the majority of the social matrix; in short as a handicap. As in eugenics, dysgenics can be achieved in a positive and a negative way. Positive dysgenics intends to increase the overall number of people with a particular genetic trait. Marriage between deaf people or conceiving deaf children through reproductive technology are examples of positive dysgenics. Negative dysgenics can be obtained through careful prenatal or pre-implantation selection and abortion (or discarding) of normal embryos and foetuses. Only deaf children would be allowed to live. If dysgenics is seen as a programmed genetic intervention that undesirably shapes the human condition--like deliberately creating deaf or dwarf people--the professionals involved in reproductive technologies should answer the question if this should be an accepted ethical practice because the basic human right to an open future is violated.

Deafness↗

PubMed1982

On the possibility of the reemergence of a dysgenic trend with respect to intelligence in American fertility differentials.

The author "examines the relationship between IQ and fertility in a sample of men and women aged 25-34 as of the late 1970s. This sample is of unusual interest for two reasons: (1) it is a national probability sample, representative of the non-institutional civilian population of the U.S. as a whole, and (2) it is for a post-World War II cohort. Most previous studies of the IQ/fertility relationship have employed nationally unrepresentative samples of cohorts born in the pre-war period, 1910-1940. The bias, in both time and place, of the samples used in these studies has not been adequately grasped by those who cite them as evidence of a eugenic trend with respect to intelligence." It is hypothesized that persons with higher intelligence tend to have fertility equal to, if not exceeding, that of the population as a whole in periods of rising birth rates and that the opposite is true in periods of falling birth rates. This hypothesis is generally supported by the data set described above. Variations by sex and race are also examined.

Americas↗

PubMed1992

Led (astray) by genetic maps: the cartography of the human genome and health care.

Advocates of projects to map the human genome claim that the information produced will illuminate the causes of human disease, improve treatment and, in general, increase our health and well-being. While concerns about the costs of mapping and the possible discriminatory and eugenic applications of the information it will provide have received some attention, assumptions implicit in the biomedical discourse in which its 'benefits' are proposed and which are shaping definitions of illness and health, normality and abnormality, have not yet been adequately analyzed. This paper examines how the genetic stories about mapping and its potential products being told in the biomedical (and popular) literature continue a tradition of reductionism and determinism. This new 'cartography', by adopting the blueprint as a metaphor for genes, leads to restricted conceptions of health and illness, reinforces inequities in the distribution of health and, by privatizing and individualizing responsibility for health, creates and legitimizes a new arena for social control.

Chromosome Mapping↗

PubMed2004

The Nazi symbiosis: politics and human genetics at the Kaiser Wilhelm Institute.

The case of the Kaiser Wilhelm Institute for Anthropology, Human Heredity and Eugenics (KWIA), from its inception in Weimar Republic Germany to its apogee under the rule of the Third Reich, is an example of how politics and human heredity can function as mutually beneficial resources. Whether it was a result of the Nazi bureaucrats' desire to legitimize their racial policy through science, or the KWIA personnel's desire to secure more funding for their research, the symbiotic relationship that developed between human genetics and Nazi politics could help explain why many scientists in the Third Reich undertook research projects that wholly transgressed the boundaries of morally acceptable science.

Academies and Institutes↗