John Craig Venter helped map the genomes of humans, fruitflies, and other organisms in the US in the late 1990s and early 2000s, and he helped develop an organism with a synthetic genome. In February 2001, Venter and his team…
John Craig Venter helped map the genomes of humans, fruitflies, and other organisms in the US in the late 1990s and early 2000s, and he helped develop an organism with a synthetic genome. In February 2001, Venter and his team published a human genome sequence after using a technique known as Expressed Sequence Tags, or ESTs. Venter worked to bridge commercial investment with scientific research. Venter founded a number of private companies, including the for-profit Celera Genomics, headquartered in Alameda, California, as well as research institutes, such as the not-for-profit J. Craig Venter Institute, located in Rockville, Maryland, and La Jolla, California.
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The Human Genome Project (HGP) was an international scientific effort to sequence the entire human genome, that is, to produce a map of the base pairs of DNA in the human chromosomes, most of which do not vary among individuals.…
The Human Genome Project (HGP) was an international scientific effort to sequence the entire human genome, that is, to produce a map of the base pairs of DNA in the human chromosomes, most of which do not vary among individuals. The HGP started in the US in 1990 as a public effort and included scientists and laboratories located in France, Germany, Japan, China, and the United Kingdom. Scientists hypothesized that mapping and sequencing the human genome would facilitate better theories of human development, the genetic causes and predispositions for a number of diseases, and individualized medicine. The HGP, alongside the private effort taken up by the company Celera Genomics, released a working draft of the human genome in 2001 and a complete sequence in 2003. The history of the HGP ripples beyond biomedical science and technology into the social, economic, and political.
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Francis Sellers Collins helped lead the International Human Genome Sequencing Consortium, which helped describe the DNA sequence of the human genome by 2001, and he helped develop technologies used in molecular genetics while working in the US in the twentieth…
Francis Sellers Collins helped lead the International Human Genome Sequencing Consortium, which helped describe the DNA sequence of the human genome by 2001, and he helped develop technologies used in molecular genetics while working in the US in the twentieth and twenty-first centuries. He directed the US National Center for Human Genome Research (NCHGR), which became the National Human Genome Research Institute (NHGRI), of the US National Institutes of Health (NIH), located in Bethesda, Maryland, from 1993 to 2008. Collins led teams of researchers to use data on human genomes to investigate the genetic aspects of diseases and treatments, the variations among people in terms of their DNA sequences, and the evolution of humans. Collins became director of the NIH in 2009. Some criticized him for his Christian faith and its possible impacts on science funding through the NIH, such as for stem cell research, cloning, and embryonic genetic testing. As a director of the NHGRI and the NIH, Collins helped shape the structures and aims of projects in biology that pursue what he called big science, and he helped relate those projects to federal governments and to private companies.
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In the past century, a number of technological projects have been undertaken as grand solutions to social problems. In the so called century of biology, this technological world view focuses on biomedical advances. The President of the United States, who…
In the past century, a number of technological projects have been undertaken as grand solutions to social problems. In the so called century of biology, this technological world view focuses on biomedical advances. The President of the United States, who once called for nuclear weapons and space exploration, now calls for new biotechnologies, such as genomics, individualized medicine, and nanotechnology, which will improve the world by improving our biological lives. Portrayed as the Manhattan Project of the late 20th Century, the Human Genome Project (HGP) not only undertook the science of sequencing the human genome but also the ethics of it. For this thesis I ask how the HGP did this; what was the range of possibilities of goods and evils imagined by the HGP; and what, if anything, was left out. I show that the Ethical, Legal, and Social Implications (ELSI) research program of the HGP was inscribed with the competencies of the professional field of bioethics, which had lent itself useful for governing biomedical science and technology earlier in the 20th century. Drawing on a sociological framework for understanding the development of professional bioethics, I describe the development of ELSI, and I note how the given-in-advance boundaries between authorized/unauthorized questions shaped its formation and biased technologically based conceptualizations of social problems and potential solutions. In this sense, the HGP and ELSI served both as the ends of policy and as instruments of self-legitimation, thus re-inscribing and enacting the structures for these powerful sociotechnical imaginaries. I engage the HGP and ELSI through historical, sociological, and political philosophical analysis, by examining their immediate context of the NIH, the meso level of professional/disciplinary bioethics, and the larger context of American democracy and modernity. My argument is simultaneously a claim about how questions are asked and how knowledge and expertise are made, exposing the relationship between the HGP and ELSI as a mutually constitutive and reciprocally related form of coproduction of knowledge and social structures. I finish by arguing that ELSI is in a better position than bioethics to carry out the original project of that field, i.e., to provide a space to elucidate certain institutionally authorized questions about science and technology. Finally, I venture into making a prophecy about the future of ELSI and bioethics: that the former will replace the latter as a locus for only formally rational and thin ethical debates.
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