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PubMed2006

A question of blood, race, and politics.

This article explores the political and intellectual context of a controversy arising from a proposal made at the 1959 meetings of the American Society of Blood Banks to divide the blood supply by race. The authors, a group of blood-bankers and surgeons in New York, outlined difficulties in finding compatible blood for transfusion during open-heart surgery, which they attributed to prior sensitization of their patient, a Caucasian, by a previous transfusion from an African American donor. Examining the statistical distribution of blood-group antigens among the various races, they concluded that risk of adverse hemolytic reactions and the cost of testing could be reduced by establishing separate donor pools. The media reported the suggestion, which, given the political climate of the day, rapidly became a public issue involving geneticists, blood-bankers, physical anthropologists, and the African American medical community. Liberals condemned it, whereas eugenically inclined segregationists used the finding to support their views concerning evolutionary distance between the races and the dangers of miscegenation. Here we examine the contribution of comparative racial serology to this affair, the arguments and background of the main players, and the relevance of the debate to discussions about the role of "race" in post-genomic medicine.

Blood Banks↗

PubMed1985

Human gene therapy: scientific and ethical considerations.

The term 'gene therapy' encompasses at least four types of application of genetic engineering for the insertion of genes into humans. The scientific requirements and the ethical issues associated with each type are discussed. Somatic cell gene therapy is technically the simplest and ethically the least controversial. The first clinical trials will probably be undertaken within the next year. Germ line gene therapy will require major advances in our present knowledge and it raises ethical issues that are now being debated. In order to provide guidelines for determining when germ line gene therapy would be ethical, the author presents three criteria which should be satisfied prior to the time that a clinical protocol is attempted in humans. Enhancement genetic engineering presents significant, and troubling, ethical concerns. Except where this type of therapy can be justified on the grounds of preventive medicine, enhancement engineering should not be performed. The fourth type, eugenic genetic engineering, is impossible at present and will probably remain so for the foreseeable future, despite the widespread media attention it has received.

Bone Marrow Transplantation↗

PubMed1991

Germ-line engineering: a few European voices.

We have surveyed various recent European opinions on germ-line engineering. The majority express more or less severe reservations about any interventions on the human germ-line, including therapeutic ones. However, they are divided over the pragmatic, or categorical-ethical nature of the relevant arguments. This split reflects two competing views of technology. The 'pessimistic' one is deeply concerned by the slippery slope leading from bona fide therapeutic applications of genetic engineering to eugenic practices. It insists that, if anything can defend us against these evils, it must be a set of strong, ethically-based prohibitions. The other, 'optimist' view is more confident in the discriminating powers of societal regulation. We argue for the latter view and suggest that the pragmatic arguments brought to this debate are less problematic than the ethical ones.

Advisory Committees↗

PubMed1994

Psychiatry, German society, and the Nazi "euthanasia" programme.

The paper begins by establishing the position of psychiatry after the First World War, concentrating upon the interplay between economy measures and limited reform during the Weimar Republic. Each therapeutic advance involved the definition of irremediable subgroups within the already socially marginalized psychiatric constituency. Nazi policy towards psychiatric patients during the 1930s involved further economy measures, and the introduction of negative eugenic strategies, were similar in kind if not degree, to those pursued in some other countries at that time. The decision to kill the mentally ill and physically disabled was taken by Hitler in order to clear the decks for war, and was justified with the aid of crude utilitarian arguments, as well as what limited evidence there was regarding popular attitudes on these issues. Many health professionals and psychiatrists accommodated themselves to policies which a few years later became one of the components of the 'Final Solution of the Jewish Question', i.e. Hitler's vengeance against the Jewish people in circumstances of war he had envisaged much earlier.

Adult↗

PubMed1995

Ethical issues related to the new reproductive technologies.

Society's attitudes about the importance of genetic affiliations, both within and outside the family structure, as well as its attitudes about the appropriate limits on eugenic practices, strongly influence how physicians and researchers approach ethical problems related to reproduction technology. Scientific advances require us constantly to reassess ethical values, as well as the effect of technology on ethical values, and vice versa. Physicians' personal ethics, as well as those of their colleagues, are an integral and important part of the physician-patient relationship, which is the foundation of sound clinical ethics.

Commodification↗

PubMed2006

Time for another revolution? The Flexner Report in historic context, reflections on our profession.

The Flexner Report, published in the early 20th century, turned medicine toward a firm scientific foundation and raised standards of education and practice. This corrected many of the profession's deficiencies present at the turn of the century such that medicine became capable of improving the health of humanity. While the focus of education on the sciences suited the needs of the era, the pendulum may have swung too far. As medical schools clamored for funding from wealthy capitalists to achieve new standards, they lost autonomy and adopted unsaid values that were possibly a danger to humanity. This dynamic may have led to the manifestation of medicine's dark history marked by the eugenics movement and the Tuskegee Project. This history demonstrates how medicine can impact humanity detrimentally when the broader scope of the humanities and arts is lost. In spite of this understanding, medical education has been dogmatic and resistant to change. The paper ends with a description of the crisis in modern medicine that is on par with the problems it faced in the early 1900s and concludes that it is indeed time for another revolution.

Capitalism↗

PubMed2005

The Medawar Lecture 1998 is science dangerous?

The idea that science is dangerous is deeply embedded in our culture, particularly in literature, yet science provides the best way of understanding the world. Science is not the same as technology. In contrast to technology, reliable scientific knowledge is value-free and has no moral or ethical value. Scientists are not responsible for the technological applications of science; the very nature of science is that it is not possible to predict what will be discovered or how these discoveries could be applied. The obligation of scientists is to make public both any social implications of their work and its technological applications. A rare case of immoral science was eugenics. The image of Frankenstein has been turned by the media into genetic pornography, but neither cloning nor stem cells or gene therapy raise new ethical issues. There are no areas of research that are so socially sensitive that research into them should be proscribed. We have to rely on the many institutions of a democratic society: parliament, a free and vigorous press, affected groups and the scientists themselves. That is why programmes for the public understanding of science are so important. Alas, we still do not know how best to do this.

Cloning, Organism↗

PubMed2001

Procreative beneficence: why we should select the best children.

Eugenic selection of embryos is now possible by employing in vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD). While PGD is currently being employed for the purposes of detecting chromosomal abnormalities or inherited genetic abnormalities, it could in principle be used to test any genetic trait such as hair colour or eye colour. Genetic research is rapidly progressing into the genetic basis of complex traits like intelligence and a gene has been identified for criminal behaviour in one family. Once the decision to have IVF is made, PGD has few 'costs' to couples, and people would be more inclined to use it to select less serious medical traits, such as a lower risk of developing Alzheimer Disease, or even for non-medical traits. PGD has already been used to select embryos of a desired gender in the absence of any history of sex-linked genetic disease. I will argue that: (1) some non-disease genes affect the likelihood of us leading the best life; (2) we have a reason to use information which is available about such genes in our reproductive decision-making; (3) couples should select embryos or fetuses which are most likely to have the best life, based on available genetic information, including information about non-disease genes. I will also argue that we should allow selection for non-disease genes even if this maintains or increases social inequality. I will focus on genes for intelligence and sex selection. I will defend a principle which I call Procreative Beneficence: couples (or single reproducers) should select the child, of the possible children they could have, who is expected to have the best life, or at least as good a life as the others, based on the relevant, available information.

Beneficence↗

PubMed1984

Ethical and social aspects of risk predictions.

This paper reviews past, present and future social and ethical considerations of screening carriers of autosomal disorders and other heterozygotes. A body of ethical and social guidance has evolved in the 1970's and 1980's for screening. The values of voluntaristic participation and informed consent are high. The goal of programs should be to provide couples, families, and individuals with knowledge respecting their reproductive choices. The dangers are coercive strategies, stigmatization, and careless communication of risk information. It is assumed that the number of autosomal carrier states that are screenable will undoubtedly increase as will states of heterozygosity that cause susceptibility to common diseases. Before the end of the century, something approaching a "biopsy of the human genome" will be a practical reality. To balance the potential for harmful psychological and social effects of so much new genetic knowledge, new efforts must be made to find treatments for progeny affected by recessive disorders. Maternal and paternal screening, prenatal diagnosis and treatment will be increasingly linked in the future. This paper will report on a case of fetal therapy for congenital adrenal hyperplasia as a paradigm for the future. The argument will be made that society ought to put a higher priority on prenatal care and prevention of disorders of prematurity than genetic disorders with a low frequency, lest genetic screening be distorted by unfounded concern about eugenics.

Adrenal Hyperplasia, Congenital↗

PubMed2005

Public health and the challenge of genomics.

This paper is a contribution to debate on the challenge to public health of advances in genomic science and its applications. While genomics offers exciting possibilities for mitigating and preventing disease and disability, it is outpacing society's comprehension as well as public health policy and practice. There is controversy in Australia and internationally over the eugenic implications of genomics, with desirable outcomes for public health set against 'slippery slope' arguments. Controversy cannot be avoided; we risk divisiveness if it is not carefully managed with informed, social-consensus-building debate. Furthermore, the intrinsic tension between genomics (with its individual and family choices) and public health (operating for the public good) may even necessitate a reconceptualisation of public health.

Australia↗

PubMed1995

Persons of lesser values--moral argument and the "final solution".

For many persons, 'Holocaust-abomination' is a fixed point on their moral compass: if anything can be evil, it was. Yet at least one of the justifications deployed by its perpetrators (the eugenics argument) involves widely-held values concerning human health and procreation. Hence persons endorsing many current activities based on those values (e.g. genetic counselling) have been charged with being on a morally deplorable slippery slope. This paper sketches the necessary structure of a moral position capable of consistently embracing those values without placing its occupants on that slippery slope.

Ethical Analysis↗

PubMed1990

How voluntary prenatal diagnosis and selective abortion increase the abnormal human gene pool.

It is often assumed that prenatal diagnosis followed by the selective abortion of "defective" fetuses has a positive eugenic effect. Although mandatory selective abortion of "defective" fetuses and, more important, carriers would tend to reduce the number of deleterious genes in the gene pool, the present program of voluntary prenatal diagnosis and selective abortion actually increases the number of deleterious genes. This raises the issue of freedom of choice regarding selective abortion and societal pressure on parents to undergo prenatal testing and to abort their fetus should it have a genetic disorder or be a carrier of one.

Abortion, Therapeutic↗

PubMedDate not supplied

Ethical issues in genetic therapy.

Ethical issues in genetic therapy involve the use of genetic science for human good and the avoidance of preventable harms. Immediate issues are the control and confidentiality of results of genetic testing, possible discrimination against those found to have genetic diseases, and the just allocation of beneficial genetic therapies. Less practical, but possibly more significant, dilemmas involve the use of genetic science in ways that go beyond prevention and cure of disease. Such use as trait enhancement and "neo-eugenics" raise troubling ethical concerns.

Attitude to Health↗

PubMed1982

Mercy killing without consent. Historical comments on a controversial issue.

In recent discussions on euthanasia the question about mercy killing without consent of mentally ill persons has turned up, particularly in cases of hopeless suffering among senile or chronically insane patients. Possible analogies to the actions under the German Nazi-regimen and relations to the concept of Social Darwinism with suggestions about active eugenic control as propagated in the early part of this century are outlined in a historical review. The implications and obvious dangers of misuse of any such kind of active euthanasia in psychiatry are discussed on this background.

Ethics↗

PubMed1967

Changing man.

The human condition is changing both culturally and biologically. Although the cultural evolution overshadows the biological, the two are connected by feedback relationships; culture has a biological foundation. Natural selection continues to operate in modern mankind, but its action ought to be supplemented by artificial selection. The problems of the management of human evolution are, however, as much sociological as they are biological. The success of any eugenical program depends on the creation of favorable conditions for human development and self-actualization. In particular, the urgency of the problem of uncontrolled overpopulation exceeds at present that of genetic improvement. Contrary to the alarmist views of some biologists, the evolutionary perspectives for the human species may be regarded as favorable, although, of course, subject to improvement. Man should be the maker of his history, including his evolutionary history. The trend toward increasing social mobility and equality of opportunity may have desirable genetic effects because of the positive assortative mating which it encourages. It makes possible the realization of many hitherto concealed genetically conditioned talents and aptitudes. Rapid progress of both molecular and organismic, Cartesian and Darwinian, biology gives hope of development of new and powerful methods of genetic engineering, control of gene action, betterment of the environment, and improved understanding of the evolutionary processes in the living world, including man.

Biological Evolution↗

PubMed1996

Not a slippery slope or sudden subversion: German medicine and national socialism in 1933.

The history of medicine this century is darkened by the downfall of the German medical profession, exposed during the doctors' trial at Nuremberg in 1946. Relying largely on documents published during 1933 in German medical journals, this paper examines two widely accepted notions of those events, metaphorically termed "slippery slope" and "sudden subversion." The first connotes a gradual slide over infinitesimal steps until, suddenly, all footing is lost; the second conveys forced take over of the profession's leadership and values. Both concepts imply that the medical profession itself became the victim of circumstances. The slippery slope concept is a prominent figure of argument in the current debate on bioethics. The evidence presented here, however, strongly suggests that the German medical community set its own course in 1933. In some respects this course even outpaced the new government, which had to rein in the profession's eager pursuit of enforced eugenic sterilizations. In 1933 the convergence of political, scientific, and economic forces dramatically changed the relationship between the medical community and the government. That same convergence is occurring again and must be approached with great caution if medicine is to remain focused on the preservation of physical and medical integrity.

Complicity↗

PubMed2004

Genetics and public health--evolution, or revolution?

During the 19th and early 20th century, public health and genetics shared common ground through similar approaches to health promotion in the population. By the mid-20th century there was a division between public health and genetics, with eugenicists estranged and clinical genetics focused on single gene disorders, usually only relevant to small numbers of people. Now through a common interest in the aetiology of complex diseases such as heart disease and cancer, there is a need for people working in public health and genetics to collaborate. This is not a comfortable convergence for many, particularly those in public health. Nine main concerns are reviewed: fear of eugenics; genetic reductionism; predictive power of genes; non-modifiable risk factors; rights of individuals compared with populations; resource allocation; commercial imperative; discrimination; and understanding and education. This paper aims to contribute to the thinking and discussion about an evolutionary, multidisciplinary approach to understanding, preventing, and treating complex diseases.

Attitude to Health↗

PubMed1999

Genetic screening with the DNA chip: a new Pandora's box?

The ethically controversial option of genetic population screening used to be restricted to a small number of rather rare diseases by methodological limitations which are now about to be overcome. With the new technology of DNA microarrays ("DNA chip"), emerging from the synthesis of microelectronics and molecular biology, methods are now at hand for the development of mass screening programmes for a wide spectrum of genetic traits. Thus, the DNA chip may be the key technology for a refined preventive medicine as well as a new dimension of eugenics. The forthcoming introduction of the DNA chip technology into medical practice urgently requires an internationally consistent framework of ethical standards and legal limitations if we do not want it to become a new Pandora's box.

Ethics, Medical↗