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PubMed2005

Off the map: a critical geography of intellectual disabilities.

A "critical geography of intellectual disabilities" is outlined. Drawing on personal experience and borrowing poetic inspiration, claims about the end of the institutional era for intellectual disabled people are disputed, and the continuing eugenic legacy, complete with its multiple stigmatizing effects, is emphasized. The extent of the social exclusion experienced by many people with intellectual disabilities in the wider community, linked to various poor quality of life indicators, is also given attention. Finally, speculations are raised about how to move beyond the "asylum" and the "ghetto", empowering intellectually disabled people in the process.

Deinstitutionalization↗
PubMed2006

Education or degeneration: E. Ray Lankester, H. G. Wells and the outline of history.

This paper uses the friendship and collaboration of Edwin Ray Lankester (1847-1929), zoologist, and Herbert George Wells (1866-1946), novelist and journalist, to challenge the current interpretation of late Victorian concern over degeneration as essentially an intellectual movement with little influence in contemporary debates over social and political problems. Degeneration theory provided for Lankester and Wells the basis both for a personal bond and for an active programme of social and educational reform. I trace the construction of Lankester's account of degeneration, initially as empirical 'fact' and later as ideologically inflected theory, and the reciprocal relationship between this theory and his critique of the British university system. I use Wells's Outline of history (1920) to illustrate the profound influence of Lankester's degenerationist worldview on Wells's scientific and socio-political thought. Lankester's synthesis of his theory and his critique led the two men to reject eugenics as an unscientific and ideologically incompatible solution to the problem of national deterioration. Instead, they campaigned for the reform of scientific education as a means of keeping mankind from physical, intellectual and cultural degeneration.

Biological Evolution↗
PubMed2006

From a genetic innovation to mass health programmes: the diffusion of Down's Syndrome prenatal screening and diagnostic techniques in France.

Down's Syndrome prenatal diagnostic and screening techniques have spread widely in France over the last 30 years and are now part of the routine clinical practice of prenatal care. These techniques, which originated in the field of genetics, ultrasonography and biochemistry, were the first to provide the possibility of choosing the features of the foetus, or at least to reject some of its characteristics. They lead to new norms of healthy foetuses and a progressive acceptance of medical abortions. The aim of this paper is to understand how the use of these tests has been generalised in France despite scientific controversies about their risks and ethical questioning about a potential renewal of eugenics. It analyses the representations of public needs that have been articulated by key players in the scientific and medical fields. This research explores political and administrative decision making processes to understand how progressively widening public access to prenatal testing has been organised and funded. The results highlight the scientific and political role of biomedical researchers, the forms of involvement of health authorities and politicians, and the passive participation of the vast majority of the users. The paper also examines the characteristics of the French health system that facilitated the generalised use of the technology.

Abortion, Eugenic↗
PubMed1998

Twisting the ladder of science: pure and practical goals in twentieth-century studies of inheritance.

In the twentieth century studies of inheritance have been driven by both practical and theoretical concerns. The metaphor of a ladder helps to illustrate how applied and pure interests have worked together in scientific development. This 'ladder' has significant 'twists' in it due to the unique nature of genetics, entwining the science of heredity with powerful and possibly compromising personal, social and commercial agendas. These implications are manifest in the history of agricultural research, eugenics, and the business of science. Today, as in the past, genetics is a prestigious science that requires cautious movement forward as human beings face its tremendous challenges and potential dangers.

Agriculture↗
PubMed2000

France in the era of Mendelism (1900-1930).

This paper describes and explains the reception of Mendelism among French biologists at the beginning of the 20th Century. Three dimensions of description must be taken into account: scholarly diffusion; transmission of the new science through teaching and textbooks; and effective research. These three axes of description do not provide the same picture: Mendelian research was widely reported among specialists; no significant teaching of Mendelism took place in the years 1900-1930; by 1930 only one biologist, Lucien Cuénot, had carried out significant genetic research, but he abandoned his Mendelian research in 1914. The resistance to Mendelism can be attributed to four categories of factors, none of which is sufficient. The first category includes a series of intellectual factors: a massively positivist conception of science, an approach to heredity that privileged a 'physiological' theory, and a poor development of cytology. The second set of factors stems from the failure of French academic biologists to establish a strong interaction with plant and animal breeding. The third factor is the relatively weak influence of the eugenic ideology in France. Finally, the particular organization of French universities, together with the deaths of numerous young scientists during World War I, amplified the effects of the previous factors.

Animals↗
PubMed2005

New breeds of humans: the moral obligation to enhance.

This paper argues that we have a moral obligation to enhance human beings. It is argued that if one is committed to the moral obligation to treat and prevent disease, one is also committed to genetic and other enhancement in so far as this promotes human well-being. It is argued that this is not eugenic but expresses our fundamental human nature: to make rational decisions and to try to improve ourselves. To be human is to strive to be better.

Ethics, Clinical↗
PubMed2005

Ethics and the future of preimplantation genetic diagnosis.

The future growth of preimplantation genetic diagnosis (PGD) will depend on refinements in genetic knowledge and genetic analysis of blastomeres. Equally important, however, is an acceptance of the ethical legitimacy of parents using technologies to select genetic traits of offspring. Objections based on embryo status, the giftedness of reproduction, eugenics, and protecting the child's welfare are not convincing grounds to oppose most uses of PGD. Whether PGD should be accepted for new medical or non-medical uses should depend upon a careful assessment of the proposed use's importance to the person or couple requesting it, and the harmful effects, if any, which it might cause. Such an approach leads to the conclusion that most new medical uses of PGD and some non-medical uses should be permitted.

Deafness↗
PubMed2000

Attitudes toward genetic counseling and prenatal diagnosis among a group of individuals with physical disabilities.

Few studies have been published on the attitudes of people with physical disabilities toward genetic counseling and prenatal diagnosis. Articles in the lay press and social science literature on this topic, mainly written by disability rights activists and advocates, imply opposition to prenatal diagnosis and the field of clinical genetics by the physically disabled population. In this study, 15 adults with physical disabilities were interviewed regarding their attitudes toward genetic counseling and prenatal diagnosis. Genetic counseling and prenatal diagnosis were generally viewed favorably by this sample of the disability community. Only a small percentage of the sample perceived genetics to be eugenic. Implications for genetic counseling and future research are discussed.

Adult↗
PubMed2001

[Bacteriology and constitutional health--genomics and proteomics: concepts in medicine and concepts in health insurance in the past and future].

Future discussions on health issues on the individual or society level will be fundamentally linked to genetic dispositions. This genetic world will become reality in the same way the world of hygiene and bacteriology has become real for everyone. Approaches of molecular medicine for public health issues have not yet been created so far. The secret dreams of molecular eugenics must be made public and critically discussed. Up to now only a few monogenetically recessive hereditary diseases can be detected by screening. This kind of screening should be carefully considered. However, for the sciences, for medicine and thus for the physicians in practice, for health care sciences as well as for public health care, new tasks will emerge from genetics and molecular medicine. In individual as well as public health these new tasks will at first mainly turn in on the sphere of diagnosis and specific screening as well as health education and consultation. With regard to the considerable social implications the public health care sector should be aware of the coming issues of molecular medicine in time.

Communicable Disease Control↗
PubMed1998

Genetic screening and ethics: European perspectives.

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

Adult↗
PubMed2004

The difference that difference makes: bioethics and the challenge of "disability".

Two rival paradigms permeate bioethics. One generally favors eugenics, euthanasia, assisted suicide and other methods for those with severely restricting physical and cognitive attributes. The other typically opposes these and favors instead ample support for "persons of difference" and their caring families or loved ones. In an attempt to understand the relation between these two paradigms, this article analyzes a publicly reported debate between proponents of both paradigms, bioethicist Peter Singer and lawyer Harriet McBryde Johnson. At issue, the article concludes, are two distinct axiomatic sets of values resulting in not simply different styles of rhetoric but different vocabularies, in effect two different languages of ethics.

Bioethics↗
PubMed2006

Non-voluntary sterilization.

We cannot easily condemn in principle a policy where people are non-voluntarily sterilized with their informed consent (where they accept sterilization, if they do, in order to avoid punishment). There are conceivable circumstances where such a policy would be morally acceptable. One such conceivable circumstance is the one (incorrectly, as it were) believed by most decent advocates of eugenics in the late nineteenth and early twentieth century to exist: to wit, a situation where the human race as such is facing a threat. Perhaps today's Chinese experience with a threat of over-population is a more realistic example? Finally, there is some room for a kind of non-voluntary (and coercive) sterilization without informed consent. I think of people who are severely mentally retarded, and who cannot understand how sexual intercourse relates to conception. If some of these persons are fertile and sexually active, it may very well be the morally right thing to do to sterilize these persons, in their own best interest, but without their consent--if necessary even through coercive means.

Eugenics↗
PubMed2002

Symbiogenesis: the hidden face of Constantin Merezhkowsky.

Constantin Merezhkowsky is celebrated today for his theory of symbiogenesis, postulated in the early decades of the twentieth century, particularly that chloroplasts were symbiotic cyanophytes (cyanobacteria). While biologists point singularly to what they see as his heroic achievement, its neglect and subsequent rediscovery, we introduce a broader and much more complex perspective on his science, his troubled life and career. We present a view of Merezhkowsky as zoologist, anthropologist, botanist, philosopher, and novelist. We explain the genesis of his theory of the origin of chloroplasts and of nucleus and cytoplasm as symbionts, as well as his depiction of the geo-chemical context of the origins and early evolution of life on earth. We also disclose his sordid social and political activities, his eugenics and racist writings, his paedophilia, and his metaphysics. Finally, we describe the context of his elaborate suicide in 1921.

Biological Evolution↗
PubMed1996

Albert Wilmarth's nineteenth century study of Down's syndrome in America: the work of a neuropathologist, asylum superintendent and eugenicist.

Albert Wilmarth was an influential physician in nineteenth century America. His works in asylum management, eugenics and neuropathology were intimately interrelated, and his conception of people with Down's syndrome and how they should be treated were largely a product of these relationships. While many of his activities may be perceived in a negative way today, he should be credited with having discovered vasculitis in the brains of people with Down's syndrome during his pathological studies, a condition which is now perceived as autoimmune.

Down Syndrome↗
PubMedDate not supplied

Charles Richet: medical scientist, innovator, peace thinker and savant.

This article looks at the life of Professor Charles Richet (1850-1935), a distinguished medical scientist who received the Nobel Prize in Physiology or Medicine in 1913 for his work on anaphylaxis. He was also an aeroplane engineer, an investigator of psychic phenomena, active in the medical and international peace movement as a member of the leading peace organisations of the time including the International Medical Association for the Suppression of War, and the French Peace League. He also promoted controversial views about eugenics and the means of constructing what he considered to be a strong and healthy society.

Anaphylaxis↗
PubMed2004

Genomic susceptibility-testing and pregnancy: something old, something new.

This essay explores how testing for common and complex or genomic, as opposed to genetic, susceptibility to deep vein thrombosis both challenges and consolidates old social discourses on genes, gender and pregnancy. The nexus between genetics and reproduction usually crystallizes in the moral dilemma of selective termination. This essay examines online discussion among women with a genomic predisposition to deep vein thrombosis, which is associated with miscarriage and stillbirth. It explores the women's exchanges on what to 'do' in order to safely carry to term a foetus, which may always also have the genomic susceptibility. Interpreting DNA not in terms of predicting fate but of suggesting how to modify one's behaviour in order to give and care for life blunts its eugenic edge. However, this interpretation also shoulders discussants with the complicated and laborious responsibility of modifying themselves, their life styles and the life styles of their families--all of which falls within women's traditional labour of love in the privatized age of bioindividuality.

Abortion, Eugenic↗
PubMed2005

A sense of autonomy is preserved under Chinese reproductive policies.

China has had a one-child family policy since 1979 and a National Family Planning Law since 2002. This paper presents analysis of comments from members of the general public and experts in China on the question of reproductive autonomy. The Chinese concept of 'Yousheng' (healthy birth) is more appropriate than eugenics as an expression of Chinese social policy and public attitudes. The widespread support for healthy birth has policy implications. None of the persons interviewed said that they had ever used ultrasound to choose the gender of their child nor had an abortion for the reason of a fetus's gender. Despite the bad impression of abortion from their experience, most would abort a fetus with a genetic disease. Respondents in rural areas were less likely to use prenatal care, pointing to more important social problems in reproduction in China. The impressions given from the survey stands in contrast to the implications of the majority of Western papers on the Chinese situation, and indicate that people are generally satisfied with the ethical balance towards the societal needs over individual autonomy, but they still have a sense of reproductive autonomy. There needs to be further study into these issues with larger surveys and interview studies.

Abortion, Induced↗
PubMed2005

The Harvard case of Xu Xiping: exploitation of the people, scientific advance, or genetic theft?

A unique history and make-up of a population may make it an attractive research target for population geneticists and pharmaco-genomic investors. The promise of pharmaceutical profits and advances in medical knowledge attracted Harvard researchers and the company Millennium Pharmaceuticals to remote areas in Anhui Province, Central China, leading to international diplomatic disagreements about issues such as the ownership of genetic material and informed consent (IC). This article discusses the role of genomics and genetic sampling in China, the way it is related to population policies (the new eugenics), the national importance of genetic materials and the conflicts it led to between the Chinese government and Harvard University. Here many consider the Xu Xiping case as textbook example of ruthless Western exploitation of development countries, illustrating the cold rationality of science in the process of globalisation. Ten perspectives on this case show that this view is simplistic and contributes little to an understanding of bioethical issues important to the population actually donating the samples. Viewing the Xu Xiping case as the nexus of the intertwinement of international, transnational, national, and local interest groups shows how different interest groups make use of different units of analysis. It also clarifies why the same practice of genetic sampling continues under a different regime, and why the discussion about genetic sampling has shifted from a concern with health care of the poor to an issue of international exploitation, terrorism and development.

Biological Specimen Banks↗