Skip to main content Accessibility help
×
Hostname: page-component-8448b6f56d-c4f8m Total loading time: 0 Render date: 2024-04-19T21:09:25.568Z Has data issue: false hasContentIssue false

4 - The Rhetoric of Research Justification

Published online by Cambridge University Press:  04 August 2010

Laurelyn Whitt
Affiliation:
Brandon University, Manitoba, Canada
Get access

Summary

An article in the journal Science presented the following rationale for pursuing the Human Genome Diversity Project (HGDP): “Indigenous peoples are disappearing across the globe … As they vanish, they are taking with them a wealth of information buried in their genes about human origins, evolution, and diversity … each (population) offers “a window into the past” … a unique glimpse into the gene pool of our ancestors … Already, there are indications of the wealth of information harbored in the DNA of aboriginal peoples.” According to its advocates, the HGDP proposed to increase knowledge of human genetic diversity by preserving for future researchers the genetic materials responsible for that diversity. Ensuring the survival of the human sources of those genetic materials was not a scientific priority. Some of the Project's supporters may have regarded the latter as a social priority, although arguments from them to this effect are elusive. Indeed there is a decided sense of inevitability in the talk of “vanishing” that fueled the urgency of the research enterprise. In the words of geneticist Francis Collins, “I do think the urgency is a compelling argument … populations are not going to be there indefinitely for us to decide at some future date we would like to sample them.”

Preserving human genetic materials for future study is seen as a scientific priority; they are crucial resources for scientific knowledge production. Whereas the use of knowledge of genetic diversity is subject to ethical and political critique, its production (the story goes) is not.

Type
Chapter
Information
Science, Colonialism, and Indigenous Peoples
The Cultural Politics of Law and Knowledge
, pp. 84 - 104
Publisher: Cambridge University Press
Print publication year: 2009

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

MacKenzie, Debora, “European Commission Tables New Proposals on Genome Research,” New Scientist (25 November 1989): 24Google Scholar
Rix, Bo Andreassen, “Should Ethical Concerns Regulate Science?: The European Experience With the Human Genome Project,” Bioethics, 5:3 (1991): 255CrossRefGoogle ScholarPubMed
Cook-Deegan, Robert, The Gene Wars (New York: W.W. Norton & Company, 1994)Google Scholar
Stemerding, Dirk and Jelsma, Jaap, “Compensatory Ethics for the Human Genome Diversity Project,” Science as Culture, 5:24 (1996)CrossRefGoogle Scholar
Murray, Thomas H., “Ethical Issues in Human Genome Research,” in Shrader-Frechette, Kristin and Westra, Laura (eds.), Technology and Values (Lanham, Maryland: Rowman & Littlefield, 1997): 416Google Scholar
Tate, Warren, “A Report on the HRC Consensus Development Conference,” Centre for Gene Research Newsletter (August 1995)Google Scholar
McPherson, Elizabeth Clay, “Ethical Implications of the Human Genome Diversity Project,” Nursing Connections, 8:1 (1995): 42Google ScholarPubMed
Skene, Loane, “Mapping the Human Genome: Some Thoughts for Those Who Say ‘There Should Be a Law on It,’Bioethics, 5:3 (1991): 245CrossRefGoogle Scholar
Whelan, Marina L., “What, if Any, are the Ethical Obligations of the U.S. Patent Office? A Closer Look at the Biological Sampling of Indigenous Groups,” Duke Law and Technology Review (2006): 22Google Scholar
Garver, Kenneth L. and Garver, Bettylee, “The Human Genome Project and Eugenic Concerns,” American Journal of Human Genetics, 54 (1994): 149Google ScholarPubMed
Noble, Cheryl, “Ethics and Experts,” Hastings Center Report, 12:3 (1982): 9Google ScholarPubMed
Sherwin, Sue, No Longer Patient (Philadelphia, Pennsylvania: Temple University Press, 1992): 87Google Scholar
Vicedo, Margo, “The Human Genome Project: Towards an Analysis of the Empirical, Ethical, and Conceptual Issues Involved,” Biology and Philosophy, 7 (1992): 262CrossRefGoogle Scholar
Burrows, Beth, “Life, Liberty, and the Pursuit of Patents,” The Boycott Quarterly, 2:1 (1994): 53Google Scholar
Swazey, Judith, “Those Who Forget Their History: Lessons From the Recent Past for the Human Genome Quest,” in Annas, George and Elias, S. (eds.), Gene-Mapping (Oxford, UK: Oxford University Press, 1992): 46Google Scholar
Fischer, Lawrence M., “Mining the Genome: Big Science as Big Business,” The New York Times, 30 January 1994, Section 1: 1Google Scholar
Brenner, Sydney, “Old Ethics for New Issues,” Science and Public Affairs (August 1991): 35Google Scholar
Watson, James D., “The Human Genome Project: Past, Present and Future,” Science, 248 (1990): 46CrossRefGoogle Scholar
Jaroff, L., “The Gene Hunt,” Time (20 March 1989): 63, 67Google ScholarPubMed
Dulbecco, Renato, “A Turning Point in Cancer Research: Sequencing the Human Genome,” Science, 231 (1986): 1056CrossRefGoogle ScholarPubMed
Beckwith, Jon, “A Historical View of Social Responsibility in Genetics,” BioScience, 43:5 (1993): 330CrossRefGoogle Scholar
Barker, Joanne, “The Human Genome Diversity Project,” Cultural Studies, 18:4 (2004): 585CrossRefGoogle Scholar
,RAFI, “Stealing Indigenous Genes.” Abya Yala News, 7:2 (1994): 10Google Scholar
Roberts, Jenna, “Global Project Under Way,” Nature, 361 (1993): 675CrossRefGoogle ScholarPubMed
Kahn, Patricia, “Genetic Diversity Project Tries Again,” Science, 266 (4 November 1994): 720CrossRefGoogle Scholar
Smith, Robert L., “DNA Probe Angers the Endangered,” Syracuse Post Standard (September 9, 1993)Google Scholar
Butler, Declan, “Genetic diversity proposal fails to impress international ethics panel,” Nature, 377 (5 October 1995): 373CrossRefGoogle ScholarPubMed
“Acts of Self-Determination and Self-Defense: Indigenous Peoples' Responses to Biocolonialism,” in Krimsky, Sheldon and Shorett, Peter (eds.), Rights and Liberties in the Biotech Age: Why We Need a Genetic Bill of Rights (Lanham, Maryland: Rowman & Littlefield, 2005)

Save book to Kindle

To save this book to your Kindle, first ensure coreplatform@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about saving to your Kindle.

Note you can select to save to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Available formats
×

Save book to Dropbox

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Dropbox.

Available formats
×

Save book to Google Drive

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Google Drive.

Available formats
×