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Bioethics and Law in Action—Mining the Gaps: The Human Genome Research Project

Mark Henaghan

in Law and Bioethics: Current Legal Issues Volume 11

A gap exists between stating ethical principles and choosing which one to apply in a particular situation. Even when the choice of ethical principle is made, there is a gap between the expression of ... More

A gap exists between stating ethical principles and choosing which one to apply in a particular situation. Even when the choice of ethical principle is made, there is a gap between the expression of the principle and its interpretation when it is applied. At the point of application there is also a gap between the interpretation of the facts and the application of the principle. This chapter focuses on these gaps in the context of making law for new developments that are now available because of advances in genetic science.Less

The Healing Genes

Kaja Finkler

in Religion and Healing in America

At one time it was believed that traditional healing would disappear in light of the great success of biomedicine, especially since religion and religious healing are usually juxtaposed as mutually ... More

At one time it was believed that traditional healing would disappear in light of the great success of biomedicine, especially since religion and religious healing are usually juxtaposed as mutually antagonistic to science and biomedicine. However, recent evidence refutes this assumption. In fact, more than thirty medical schools have introduced courses on the relationship between spirituality and medicine. This chapter examines the religious underpinnings of what is ostensibly a purely scientific enterprise, the Human Genome Project (HGP) and the new genetics that form part of contemporary biomedicine. It argues that ideologies of the HGP, which utilizes the most advanced technology of the times, are sustained by religious ideas based on Judaism and Christianity. Although it may appear that contemporary scientific ideas are far removed from religious beliefs, closer scrutiny reveals that Western religious notions undergird the HGP. The chapter begins with a brief overview of modern society's shift to the secularization of medicine and then turn to the new genetics, which became an integral part of biomedicine.Less

Human Population Genomics and the Dilemma of Difference

Jenny Reardon

in Reframing Rights: Bioconstitutionalism in the Genetic Age

This chapter introduces the theme of bottom-up agency with an account of struggles for authority between socially and scientifically constituted groups of genetic research subjects. It addresses how ... More

This chapter introduces the theme of bottom-up agency with an account of struggles for authority between socially and scientifically constituted groups of genetic research subjects. It addresses how subsequent human genome variation research projects continue to bypass responsibility for their roles in co-constituting natural and moral orderings of human difference. It considers the assumptions about the constitution and proper ordering of human differences and demonstrates how they hindered consideration of the role that both population genetics and liberal systems of rights play in producing human differences. This chapter shows that the Human Genome Diversity Project and Haplotype Map Project (HapMap) cases suggest that genome scientists and their administrators seek “precise” methods for ordering human differences and defining groups that they believe protect against bias, namely racism.Less

Race in the Genomic Age

Michael Yudell and J. Craig Venter

in Race Unmasked: Biology and Race in the Twentieth Century

This chapter analyzes the relationship between molecular and evolutionary biology. By the mid-1960s, a new generation of evolutionary biologists—including Richard Lewontin and Jack Hubby—attempted to ... More

This chapter analyzes the relationship between molecular and evolutionary biology. By the mid-1960s, a new generation of evolutionary biologists—including Richard Lewontin and Jack Hubby—attempted to promote significant collaborations between the fields, albeit with little success as the two subjects remained distinct. The emergence of the 1989 Human Genome Project generated fear in the academic community, as many scientists worried that it may reignite a form of biological determinism, along with racial science in the genomic age. Within the context of the race concept's history, it is interesting to note how the Human Genome Diversity Project (HGDP), HapMap Project, and pharmacogenomics demonstrate the fact that scientists readily claim the race concept as a reasonable proxy for genetic diversity despite its limited utility as a classificatory tool.Less

The Geography of “Our Heritage”: From the Human Genome Diversity Project to the Genographic Project

Marianne Sommer

in History Within: The Science, Culture, and Politics of Bones, Organisms, and Molecules

The Human Genome Diversity Project was closely related to Cavalli-Sforza’d earlier research, especially as it was presented in History and Geography of Human Genes (1994). Not only the interest in ... More

The Human Genome Diversity Project was closely related to Cavalli-Sforza’d earlier research, especially as it was presented in History and Geography of Human Genes (1994). Not only the interest in reconstructing the modern human history, but also the blood collecting effort date further back. The HGDP was to expand that effort into a concerted global endeavour. In the project, the gene pools of indigenous peoples – the people who were to be sampled – were conceptualized as a panhuman heritage along the lines of notions of cultural heritage. Like his science before, the HGDP met with criticism from other disciplines and now also from indigenous groups. The chapter shows how the legacy of the HGDP is clearly visible in what is seen as its successor: The Genographic Project, with which Cavalli-Sforza, too, was associated. It in particular profited from the coming of age of the Y-chromosome as a population genetic system. It is shown that the Genographic Project was driven by a similar rhetoric of human advancement as Cavalli-Sforza used.Less

Epilogue: The Textual Body

Rebecca Sanchez

in Deafening Modernism: Embodied Language and Visual Poetics in American Literature

This chapter analyses the implications of the continuing fascination with embodied language through readings of the Human Genome Project and genetic poetry.

How the Government Created the Pharmaceutical Industry

Robert I. Field

in Mother of Invention: How the Government Created "Free-Market" Health Care

The pharmaceutical industry, perennially one of the most profitable,requires a steady flow of biomedical research to develop new products. However, investment in basic scienceis difficult for private ... More

The pharmaceutical industry, perennially one of the most profitable,requires a steady flow of biomedical research to develop new products. However, investment in basic scienceis difficult for private firms because discoveries are public goods available to everyone. The government has stepped in to fill this gap through the National Institutes of Health, which funds almost $30 billion of biomedical research each year. Often, it does so throughexplicit partnerships with private companies. Recent proactive initiatives, such as the Human Genome Project,areleading the industry to new scientific frontiers in genomic and personalized medicine. The government lends the industry further support by overseeing safety through the Food and Drug Administration, funding drug purchases through Medicare and Medicaid, and granting patents to new products. Without the government’s help, the industry would still exist, but it would be smaller, sell fewer products, and generate far less in profits.Less

Electron density fitting and structure validation

Mike Carson

in Macromolecular Crystallography: conventional and high-throughput methods

The Human Genome Project went three-dimensional in late 2000. ‘Structural genomics’ efforts will determine the structures of thousands of new proteins over the few years. These initiatives seek to ... More

The Human Genome Project went three-dimensional in late 2000. ‘Structural genomics’ efforts will determine the structures of thousands of new proteins over the few years. These initiatives seek to streamline and automate every experimental and computational aspect of the structural determination pipeline, with most of the steps involved covered in previous chapters of this volume. At the end of the pipeline, an atomic model is built and iteratively refined to best fit the observed data. The final atomic model, after careful analysis, is deposited in the Protein Data Bank (PDB). About 25,000 unique protein sequences are currently in the PDB. High-throughput and conventional methods will dramatically increase this number and it is crucial that these new structures be of the highest quality. This chapter addresses software systems to interactively fit molecular models to electron density maps and to analyse the resulting models. It is heavily biased toward proteins, but the programs can also build nucleic acid models. The chapter begins with a brief review of molecular modelling and graphics. It then discusses the best current and freely available programs with respect to their performance on common tasks. Finally, some views on the future of such software are given.Less

Foundations

Alan McHughen

in DNA Demystified: Unravelling the Double Helix

Chapter 2 reviews the historical foundations of DNA research and introduces the Human Genome Project, now a quarter century old. Why it was (and continues to be) so important to the genetic ... More

Chapter 2 reviews the historical foundations of DNA research and introduces the Human Genome Project, now a quarter century old. Why it was (and continues to be) so important to the genetic understanding of the origins, nature, and future of human beings is explored in this chapter. In addition to helping to address scientific and philosophical questions, the project and its diverse spinoff technologies have revolutionized many practical components of modern life. They have affected the development of personalized medicine, influenced criminal forensics, and brought the near-total elimination of paternity disputes. Also covered is the historical background of human inquiry into genetics, which provides the knowledge base underpinning the HGP.Less

Open Science

Bruno J. Strasser

in Collecting Experiments: Making Big Data Biology

The success of GenBank, and more generally of any community database, hinged on finding a solution to the problem of data acquisition. A few researchers, such as molecular biologists Richard J. ... More

The success of GenBank, and more generally of any community database, hinged on finding a solution to the problem of data acquisition. A few researchers, such as molecular biologists Richard J. Roberts, went on a campaign to convince scientific journal editors to help databases collect data from researchers. By the end of the 1990s, a number of leading journals had, often reluctantly, adopted some form of mandatory data submission policy, which tied the publication of an article to sharing data with a database. As the size of databases grew exponentially, computer scientists developed new algorithms to analyze sequence data, even on small personal computers. But tensions grew, between researchers determining sequences and bioinformaticians analyzing them, over who should own the intellectual credit for a resulting discovery. These tensions became particularly strong in the context of the Human Genome Project and remain unsolved today. The impact of the sequence database goes beyond the issue of access to scientific data, since it served as a general model for promoting open access to published scientific knowledge.Less

Of Chromosomes and DNA

Soraya de Chadarevian

in Heredity under the Microscope: Chromosomes and the Study of the Human Genome

Having mapped the scope of human chromosome studies in the postwar era, chapter 5 addresses the relation between microscope-based and molecular approaches to human heredity. In particular, it ... More

Having mapped the scope of human chromosome studies in the postwar era, chapter 5 addresses the relation between microscope-based and molecular approaches to human heredity. In particular, it reconsiders what is often referred to as the molecularization of chromosome research in the light of the simultaneous turn of molecular biology to human and medical genetics, a field long occupied by chromosome researchers. The chapter focuses on two areas of overlapping interest: the molecular biologists’ concern with the structure and function of chromosomes and the cytologists’ focus on gene mapping, a practice now often associated with genomic science. Chromosome banding and somatic cell hybridization techniques allowed cytogeneticists to map thousands of genes before molecular techniques started making an impact. The organization of the Human Genome Project in many ways built on the work and organization of the Human Gene Mapping Workshops, convened by cytogeneticists starting in the the early 1970s. The chapter concludes with a consideration of the epistemic and historical commonalities between the two contending approaches. In particular, it considers the increasing role of fluorescent microscopic techniques such as FISH (fluorescent in situ hybridization) in cell and molecular biology that provides a common ground for the two endeavors.Less

GenomicsXSlot Machines

Mike Fortun

in Promising Genomics: Iceland and deCODE Genetics in a World of Speculation

The Human Genome Project had overemphasized and overproduced what William Haseltine, CEO of Human Genome Sciences Inc., called “genetic genomics,” privileging the reference sequence for the human ... More

The Human Genome Project had overemphasized and overproduced what William Haseltine, CEO of Human Genome Sciences Inc., called “genetic genomics,” privileging the reference sequence for the human genome, and had relied too heavily on using that sequence to isolate potential drug targets. That approach might be fine for “populations where there is a clear lineage”—Estonia was the example Haseltine used, but Iceland would have served just as well—but more “outbred” populations required what he called “expression genomics.” When you play the slot machines in Atlantic City, you know that despite it being a game of chance, the game nevertheless has a well-defined structure: in the long run, the house always wins. While investing in genomics is not exactly parallel, since you always have the option of “going short” or “going long,” in general, the house will have a structural advantage. The broader Icelandic financial landscape was changing rapidly in the period before and during the deCODE Genetics years, and one feature of this new landscape was a more vibrant gray market.Less

Pharmacogenetics: One Patient, One Drug?

Donna Dickenson

in Me Medicine vs. We Medicine: Reclaiming Biotechnology for the Common Good

This chapter focuses on the components and implications of pharmacogenetics, which refers to the relationship between heritable variations and individual differences in drug response. ... More

This chapter focuses on the components and implications of pharmacogenetics, which refers to the relationship between heritable variations and individual differences in drug response. Pharmacogenetics aims to alter pharmaceutical patterns in cancer treatment and other branches of medicine in accordance to the patient’s individual genome. Some commentators believe that investment in pharmacogenetics is the most effective way to deliver the public health welfare originally pledged by the Human Genome Project. The chapter aims to devise a balanced judgment about pharmacogenetics, taking into consideration not only the medical evidence but also issues about justice, patenting, and drug rationing—including issues surrounding BiDil, a controversial personalized drug.Less

Research in an Imperfect World

Philip Kitcher

in Science, Truth, and Democracy

Concludes by considering the responsibilities of scientific researchers in societies in which the ideal of well‐ordered science does not hold. It looks, in particular, at the case of the Human Genome ... More

Concludes by considering the responsibilities of scientific researchers in societies in which the ideal of well‐ordered science does not hold. It looks, in particular, at the case of the Human Genome Project and at the moral imperatives that arise from our current, partial, knowledge of human molecular genetics.Less

Bio Art: From Genesis to Natural History of the Enigma

Eduardo Kac

in Imagery in the 21st Century

This chapter focuses on the efforts of the author of bio art and transgenic art; he compares the advancements of biotechnology with the popularization of computers. It further discusses the author’s ... More

This chapter focuses on the efforts of the author of bio art and transgenic art; he compares the advancements of biotechnology with the popularization of computers. It further discusses the author’s important transgenic artworks and briefly explains the evolution of bio art. Genesis, GFP Bunny, The Eighth Day, Move 36, and Specimen of Secrecy about Marvelous Discoveries are the various artworks among the author’s discussion in the field of genetic engineering technology. The relationship between the above-mentioned biotopes and artistic works cover the later parts of the chapter, which concludes with an analysis of The Human Genome Project and Natural History of the Enigma concepts.Less

A Future Bright and Dark

Lynn C. Klotz and Edward J. Sylvester

in Breeding Bio Insecurity: How U.S. Biodefense Is Exporting Fear, Globalizing Risk, and Making Us All Less Secure

Discoveries in molecular biology are changing the understanding of human complexity and unraveling these newfound complexities requires emerging disciplines such as systems biology. Some strategies ... More

Discoveries in molecular biology are changing the understanding of human complexity and unraveling these newfound complexities requires emerging disciplines such as systems biology. Some strategies of basic research and drug discovery and development could easily be turned toward bioweaponry with the technology already available. The Human Genome Project set one of the most ambitious goals in the history of science, to understand the “book” of instructions that makes human, and the books for other living things ranging from the ubiquitous bacterium E. coli and brewers yeast, Saccharomyces cerevisiae, to the deadly smallpox virus, Variola major. The nature of science itself, always seeks the simplest possible explanation for all the critical evidence found in unraveling any conundrum, but which has a way of finding ever new mind-numbing complications. The enormous complexity of the living world that hinders advance in medicine also hinders the fearful aspects of biological warfare and now is the time to develop biology for our benefit and not our destruction.Less

DNA Profiling Techniques

in Truth Machine: The Contentious History of DNA Fingerprinting

This chapter discusses issues related to DNA profiling techniques. It explains that DNA analysis is widely regarded as the “ultimate method of biological individualization” and explains the key ... More

This chapter discusses issues related to DNA profiling techniques. It explains that DNA analysis is widely regarded as the “ultimate method of biological individualization” and explains the key differences between DNA analysis for forensics and DNA analysis for the Human Genome Project. The chapter discusses the different DNA typing systems, including polymerase chain reaction and another based on a kind of length variation called “restriction fragment length polymorphism.”Less

Introduction

Alan McHughen

in DNA Demystified: Unravelling the Double Helix

This introduction provides an overview of some common questions and misconceptions about DNA, while discussing its physical structure, how it works, and its impact on daily life. Also covered are ... More

This introduction provides an overview of some common questions and misconceptions about DNA, while discussing its physical structure, how it works, and its impact on daily life. Also covered are chromosomes, genes, genomics, and what makes DNA so unique. DNA has generated quite a bit of interest due to major news stories of the last few decades. DNA is nature’s rock star. And, like many human celebrities, DNA can be mysterious, charming, enigmatic, complex, powerful, skilled, and at times unpredictable, but always awesome. This book pulls back the curtain to expose the machinery operating the molecule of life, showing that DNA, far from being ethereal and mystical, is actually logical, rational, usually parsimonious, and occasionally unpredictable. But still marvelously awesome!Less

Toward a Biosociality without Genes

Kelly E. Happe

in The Material Gene: Gender, Race, and Heredity after the Human Genome Project

This concluding chapter argues for a postgenomics ethos, or what the texxt calls a biosociality without genes. Biosociality, according to Paul Rabinow, is a particular type of relationality made ... More

This concluding chapter argues for a postgenomics ethos, or what the texxt calls a biosociality without genes. Biosociality, according to Paul Rabinow, is a particular type of relationality made possible by the Human Genome Project (HGP) and the profound collective and cultural changes it augured. The genome, or simply heredity, has become the defining feature of social life: disease, behavior, identity itself are all inextricably bound up with genes and their variants. What is required then is a notion of biosociality without genes, perhaps even without biology. Biosociality in this sense is thus animated by the potential to act on one's experience, in connection with others.Less