How genetics came to the unborn: 1960-2000 (original) (raw)

Noninvasive Prenatal Genetic Diagnosis and Eugenic Aims. A Bioethical Reflection

The Linacre quarterly, 2012

ABSTRACT The use of techniques of analysis of fetal nucleic acid present in maternal peripheral blood for noninvasive prenatal genetic diagnosis (NIPD) is a reality in clinical practice in the case of certain diseases. In the coming years, it will become part of routine prenatal screening and diagnostic techniques for fetal diagnosis. A bioethical reflection on the possible difficulties and problems of the use of these techniques is necessary. On one hand, these techniques will result in reduced costs of screening, an increase in the number of disabled fetuses detected, and a decrease in the number of indirect abortions caused by invasive techniques. On the other hand, the widespread use of NIPD could decrease the autonomy of women in the decision-making process; health authorities could use NIPD as a means of eugenic prevention of genetic diseases, for example, in Down syndrome cases; and finally, NIPD could increase the image of the disabled person as an individual that has to be excluded from society. For this reason physicians play an important role in the process of pre-diagnosis and post-diagnosis genetic counseling. As a result, we conclude that the use of NIPD to diagnose the existence of genetic diseases in the fetus in order to decide—in the case of a positive result—whether or not to perform an abortion implies and includes in itself the conditions that characterize a negative moral assessment.

Noninvasive Prenatal Genetic Diagnosis and Eugenic Aims: A Bioethical

The Linacre Quarterly, 2012

The use of techniques of analysis of fetal nucleic acid present in maternal peripheral blood for noninvasive prenatal genetic diagnosis (NIPD) is a reality in clinical practice in the case of certain diseases. In the coming years, it will become part of routine prenatal screening and diagnostic techniques for fetal diagnosis. A bioethical reflection on the possible difficulties and problems of the use of these techniques is necessary. On one hand, these techniques will result in reduced costs of screening, an increase in the number of disabled fetuses detected, and a decrease in the number of indirect abortions caused by invasive techniques. On the other hand, the widespread use of NIPD could decrease the autonomy of women in the decision-making process; health authorities could use NIPD as a means of eugenic prevention of genetic diseases, for example, in Down syndrome cases; and finally, NIPD could increase the image of the disabled person as an individual that has to be excluded ...

Prenatal diagnosis: The irresistible rise of the ‘visible fetus’

Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences, 2014

Prenatal diagnosis was developed in the 1970s, a result of a partly contingent coming together of three medical innovations-amniocentesis, the study of human chromosomes and obstetrical ultrasoundwith a social innovation, the decriminalization of abortion. Initially this diagnostic approach was proposed only to women at high risk of fetal malformations. Later, however, the supervision of the fetus was extended to all pregnant women. The latter step was strongly favoured by professionals' aspiration to prevent the birth of children with Down syndrome, an inborn condition perceived as a source of suffering for families and a burden on public purse. Experts who promoted screening for 'Down risk' assumed that the majority of women who carry a Down fetus will decide to terminate the pregnancy, and will provide a private solution to a public health problem. The generalization of screening for Down risk increased in turn the frequency of diagnoses of other, confirmed or potential fetal pathologies, and of dilemmas linked with such diagnoses. Debates on such dilemmas are usually limited to professionals. The transformation of prenatal diagnosis into a routine medical technology was, to a great extent, an invisible revolution.

Just choice: a Danielsian analysis of the aims and scope of prenatal screening for fetal abnormalities

Medicine, Health Care and Philosophy, 2019

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

PURE SELECTION: The Ethics of Preimplantation Genetic Diagnosis and Choosing Children without Abortion

Preimplantation genetic diagnosis (PGD) is taken to mark the starting-point of a new phase in human reproduction, where the possibility of choosing children on genetic grounds without having to resort to dangerous or ethically controversial procedures (such as abortion) will gradually increase. Ethical and political issues actualised by this development are addressed. The discussion touches upon issues regarding the moral status of embryos and gametes, the moral import of respecting individual autonomy and its implications for the requirement of informed consent in health-care, the connection between disease, disability and the value of life, the moral status of possible future people, and the connection between choosing children and eugenic policies of the past. Practical policy issues are addressed on the basis of this, as well as an empirical case-study of the introduction of PGD in Sweden. The book ends up in a set of recommendations regarding the management of research on, introduction and routine use of pure selection, both within health care and from the point of view of society as a whole. It is argued that research on such procedures should be allowed and supported by society. However, tight restrictions regarding the clinical introduction of new procedures in this area is highly desirable. A rough model for implementing such restrictions is also presented. It is further asserted that, although reasons of economy and safety should limit the access to pure selection, society should not apply any explicit restrictions based on ideas regarding how different traits affect a person's quality of life. It is stressed that, in order to avoid a resurrection of eugenic policies of the past, the development in this field underlines the need for continued and strengthened public support to the sick, disabled and mentally retarded. Keywords: assisted procreation, bioethics, embryo experimentation, eugenics, genetic testing, in vitro fertilisation, medical ethics, medical genetics, polar body biopsy, preconception diagnosis, preimplantation genetic diagnosis, prenatal diagnosis, public policy, reproductive medicine, research ethics, sex preselection.

The Perfect Baby: A Pragmatic Approach to Genetics

2000

The best book for those perplexed by the philosophical and ethical conundrums of genetics in the 21st century. (CHOICE) McGee develops a very powerful line of reasoning about genetic enhancement. (The Philadelphia Inquirer) He combines a rich body of clinical material with informed pragmatic critique. (Mary Briody Mahowald, University of Chicago) A pioneering, landmark work in pragmatic bioethics. (John J. Stuhr, Head of the Department of Philosophy, Penn State University) This captivating book offers balanced new insights for individual decisions and for public policy. (John Lachs, Centennial Professor of Philosophy, Vanderbilt University) A welcome alternative to work that force fits the issues either to scholarly abstractions or to myths of popular culture. (Caroline Whitbeck, Ethics Center for Engineering & Science, MIT) A provocative account of this emerging, cutting-edge issue that will greatly profit future commentators and policymakers. (John Robertson, School of Law, University of Texas) A useful road map as we enter the complex territory of genetic medicine in the 21st century. (James M. Wilson, director, Institute for Human Gene Therapy, University of Pennsylvania) A remarkably well-informed and sensitive exploration of the opportunities and challenges presented by the new science of genetics. (Jonathan D. Moreno, State University of New York, Brooklyn) Extremely readable and provocative . . . succeeds at something that few scholars in Bioethics have even attempted: to speak in ordinary language and in a conversational voice about the nest of subtle issues that entangle new advances in human genetics. (Eric Juengst, Ph.D. Center for Biomedical Ethics, School of Medicine) McGee is one of the most energetic and inquisitive writers in the emerging 'next generation' of bioethicists . . . His work is interesting, important, and has the kind of self-reflective courage we need to face these issues squarely. (Margaret P. Battin, University of Utah) McGee's application of the pragmatic method to issues in bioethics is both timely and effective. McGee's excellent final chapters will give students of all levels a perspective that cannot be found in other books of the kind. (Teaching Philosophy) McGee's book breathes all the virtues of a pioneering work. it puts the issue of human genetic engineering in a fresh perspective, draws the attention to many valuable points, and raises a number of important questions. (Cornelis de Waal, Newsletter of the Society for the Advancement of American Philosophy Newsletter Of The Society For The Advancement Of American) McGee's well-written and intriguing new book adds little to the content . . . .he does offer a unique and much needed practical approach to the critical analysis of the relevant issues. (Timothy Caulfield, Universtiy of Alberta Phil Review, Vol. Xvii N0.. 4-6 Aug.-Dec. 97) McGee's book is an excellent introduction to the issues and he provides especially good treatments of the nature/nurture debate and the relationship between genetics and allocation decisions. Many will find his views provocative. His work is breezy and fun to read. (L.M.P. Ethics, Jan. 1998) So where do ordinary folk, faced with a life-or-death decision, get some useful information? This book might be a good starting ground. (Beverly Kelley, California Lutheran University Sunday, June 29, 1997) The philosophical tradition of American pragmatism has had a fresh life in recent years. In McGee's hands it is richer, more suggestive . . . Not everyone will find The Perfect Baby acceptable, but McGee will give the opponents reason to pause. Weneed that kind of initiative, and McGee's book will provoke some useful, much needed debate. (Daniel Callahan, The Hastings Center) Finally— a good book about genetics— that makes these fascinating issues understandable to the families who need to know. (N. P. R.'S Voices In The Family) . . . useful to just about everyone who must grapple with the new genetics. (The Washington Times) The book is appropriately directed to a diverse audience and makes refreshing use of plain language to address relevant issues present in the choices we must now make in everyday life. (Bruce C. Trafnell, Genetic Therapy, Inc. Dept. of Virology Nature Medicine, Vol. 3 No. 6)