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Human genome project: Annotated bibliography

Collins, F. S., & Patrinos, A. N. (1996, August 17). NCHGR-DOE Guidance on Human Subjects Issues in Large-Scale DNA Sequencing: Executive Summary Executive Summary of Joint NIH-DOE Human Subjects Guidelines (issued 8/19/96). Retrieved from ornl.gov: http://www.ornl.gov/TechResources/Human_Genome/archive/nchgr.html

This document discusses the outstanding ethical issues that are involved when it comes to recruiting as well as protecting the tissue donors for the human genome research project. As such, it offers the guidance into six basic segments:

· The risks as well as the benefits of genome sequencing

· Secrecy and confidentiality

· Recruiting donors for the various DNA libraries

· Well informed and willing accent for the DNA donors

· The approval of the IRB to construct the library

· Utilization of the already existing libraries that have samples for which the sample donors did not give informed consent .

National Human Genome Research Institute. (2012, March 9). NIH-DOE Guidelines for Access to Mapping and Sequencing Data and Material Resources. Retrieved from National Human Genome Research Institute: https://www.genome.gov/10000925/access-to-mapping-and-sequencing-resources/

The guideline by the United States department of health and human services was written as a response to the critical necessity and need for a policy, concerning the rapid dissemination of genomic data, versus the researchers’ guides to the intellectual property therein. As per the guideline, there is an allowable six-month maximum period between the generation and the dissemination of data. As such, the grant applicants would be required to give information about their dissemination plan .

McLean , M. R. (2007). Religion, Ethics, and the Human Genome Project. In: Science, Religion, and Society: An Encyclopedia of History, Culture, and Controversy. Armonk, NY: M.E. Sharpe,

McLean, (360) highlights the underlying legal, ethical as well as social implications of the Human Genome project. As such, the ELSI (Ethical, Legal, and Social Implications) program significantly focused on the genetic testing process as well as the pharmacogenomics. In the book, Pharmacogenomics is described as the kind of test which would evaluate how an individual responded to given types of medication. As such according to, (McLean, 360), there was a sum of $76million used for the endeavor. On a critical view, numerous inquiries come up when planning for genetic testing. Such would include:

· Who can access the genetic information?

· How much of the genetic information can be used?

· Is the genetic screening, mandatory, or voluntary ?

Nordgren, A. (2001). The Human Genome Project: Justification, Promotion, and Access to Results. In his Responsible Genetics: The Moral Responsibility of Geneticists for the Consequences of Human Genetics Research. Dordrecht: Kluwer Academic Publishers.

In his book, Nordgren, (92) substantially answers the question, what is expected of responsible geneticists? According to Nordgren, (115) the responsible geneticists, should be held responsible for all the stages of the genetic research they undertake. He goes further to challenge the medicine geneticizing, making of tools, ensuring that there is a balance of the scientific as well as the social values during the application of the genetic technique to the regular clinical practice. He also challenges the geneticists to take responsibility for the fight against misinterpretation of the genetics as well as protesting against gene patenting. He postulates that there is a need for responsible dialogue concerning the geneticists on all the issues he raises as well as more vigilance regarding the various attempts for the beneficiaries of the project to redefine it.

Keller, E. F. (2000). The Century of the Gene. Cambridge, MA: Harvard University Press.

Keller, who is a history as well as the philosophy of science professor at the MIT, offers a reminder that we had been alluding ourselves for over fifty years, believing that the secret of life, is found in discovering the molecular underlayment of the genetic information. However, after, the call for functional genomics, it turns out that there is a significant disparity between genetic ‘information’ and the biological meaning. As such, (Keller, 414) asks that the researchers should recognize and appreciate the complexity of biology. She goes further to advise that, the definition of the terms that are used to discuss genetics must also be scientific as well as precise in their utilization.

Murphy, T. F. (2014). The Genome Project and the Meaning of Difference. In Justice and the Human Genome Project. Berkeley: University of California Press.

Murphy (248) questions the genome research: "What is the moral argument to be offered that the suffering of people here and now can be sacrificed to expected benefits in the future?" h. He continues to highlight the fact that as a” huge science,” the sole aim of the human genome project is to combine all the studies in one manner of genetic information representation. He argues that the single representation method is critical because there are numerous methods, but none of them can be said to be neutral, since, even the genomic characterization is an element of one’s social as well as the conceptual background. Murphy, (248) goes further to caution that, as per history’s lessons, is never clear of whether or not there is need to effect all the possible aspects.

Oliver, J. M., & McGuire, A. L. (2011). Exploring the ELSI Universe: Critical Issues in the Evolution of Human Genomic Research. Genome Medicine, 3(6):38.

Oliver & McGuire, (38) gave a report on the NHGRI ELSI research program. They explored and evaluated the ELSI Universe which was held in North Carolina on April 2011.they reported the various privacy issue that was related to the biobanks as well as the possible impacts of the human genome research on the healthcare disparities.

Griffiths, P. E., & Stotz, K. (2006). Genes in the Postgenomic Era. Theoretical Medicine and Bioethics, 27(6): 499-521 doi: 10.1007/s11017-006-9020-y.

In the article, Griffiths & Stotz, (500) present three distinct gene concepts which include:

· Instrumental

· Nominal

· Post-genomic

On ‘instrumental,' the main focus is the role of the gene in research as well as experimentation. On ‘nominal,' the focus point is the function of the gene as a tool of science. On Postgenomic, the point of focus is the ongoing human genome project, which seeks to understand the numerous layers, of the functioning of the gene. Because the various definition in the gene is inaccurately in scientific as well as other popular literature, the authors define the gene and stand to defend their definition. As such they define the gen as manners through which the cell uses the template resources that are available to form biomolecules which are a necessity at a given place at a specified time .

WORK CITED

Collins, Francis S. and Aristides N. Patrinos. NCHGR-DOE Guidance on Human Subjects Issues in Large-Scale DNA Sequencing: Executive Summary Executive Summary of Joint NIH-DOE Human Subjects Guidelines (issued 8/19/96). 17 August 1996. http://www.ornl.gov/TechResources/Human_Genome/archive/nchgr.html.

Griffiths, Paul E. and Karola. Stotz. “Genes in the Postgenomic Era. .” Theoretical Medicine and Bioethics (2006): 27(6): 499-521 doi: 10.1007/s11017-006-9020-y .

Keller, Evelyn Fox. The Century of the Gene. Cambridge, MA: Harvard University Press, 2000.

McLean, Margaret R. Religion, Ethics, and the Human Genome Project. In: Science, Religion, and Society: An Encyclopedia of History, Culture, and Controversy. Armonk,NY: M.E. Sharpe,, 2007.

Murphy, Timothy F. The Genome Project and the Meaning of Difference. In Justice and the Human Genome Project . Berkeley: University of California Press, 2014.

National Human Genome Research Institute. NIH-DOE Guidelines for Access to Mapping and Sequencing Data and Material Resources. 9 March 2012. https://www.genome.gov/10000925/access-to-mapping-and-sequencing-resources/

Nordgren, Anders. The Human Genome Project: Justification, Promotion, and Access to Results. In his Responsible Genetics: The Moral Responsibility of Geneticists for the Consequences of Human Genetics Research . Dordrecht: Kluwer Academic Publishers, 2001.

Oliver, Jill M. and Amy L. McGuire. “Exploring the ELSI Universe: Critical Issues in the Evolution of Human Genomic Research.” Genome Medicine (2011): 3(6):38.

�This is not MLA style.

�Why is this in bold? Where is the required introductory paragraph?

�Where are the credentials of the authors? How do you know that you can trust what’s written in this document?

What is the genre of the source? Simply labelling it as a “document” is not enough.

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At least 3 of the required components of a critical annotation are missing here.

�This is not a complete annotation. See above comment for missing sections.

�Annotations should be arranged in alphabetical order.

�Another annotation that does not meet the requirements of the project.

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�None of your critical annotations meet the minimum length requirement of the project. Additionally, most of your annotations are missing at least 2 of the required components. Therefore, the work you have submitted here cannot be considered meeting the minimum requirements of the assignment and cannot receive a passing grade.