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Magazine Feature

The Human Genome Project: Community Conversations at the Brooklyn Public Library

by Kristin Harley on April 29, 2013

The Human Genome Project’s (HGP) Community Conversations project is a National Institutes of Health (NIH) grant-funded library outreach program aimed at the general public, especially low-income communities of color. Librarians at the Brooklyn Public Library (BPL), the fifth-largest library system in the nation, partnered with the Genome Outreach and Education department at the Medgar Evars College/CUNY, Libraries for the Future (LFF), and WE ACT for Environmental Justice on an initiative to educate traditionally underserved communities about genetics, genomics, and genetic testing; writing up a family health history, the evidence for human evolution, and—perhaps most important for ethnic minorities in the United States––genetic privacy rights and the benefits and risks of genetic testing.

HGP was initiated by the NIH and the Department of Energy, with the participation of eighteen other nations in 1990. In 2003, on the anniversary of the discovery of DNA by James D. Watson, Francis Crick, and Rosalind Franklin, the complete sequence was announced. Thus began the “Genomic Era,” having profound implications in the lives of all of us at a time when the general public is woefully uninformed about genetics and genomics. For example, in 2008, New York City Mayor Michael Bloomberg called for DNA samples of everyone ever arrested in the city, and rather melodramatically offered a six-figure prize for the invention of a device that could analyze DNA immediately at a crime scene.1 The mayor also famously called for the DNA fingerprinting of all those who have been arrested, a plan that was immediately denounced by then Governor Eliot Spitzer—whose proposal only included creating a genetic database of all those convicted of a crime. This debate and Bloomberg’s previous proposal to create a similar database (of either DNA or fingerprints) of all legal U.S. workers2 has created confusion about the statistical nature of DNA analysis results and panic in some in the American public, who fear profiling or discrimination. In addition, it raises questions about personal liberty and one’s right to due process.

A more immediate concern is the explosion in genetic testing, often by fly-by-night operations that charge fees to inflame the fears of, or give false assurances to, the most vulnerable customers—lower-income Americans concerned about personal predisTheposition toward disease or cancer.

The most pernicious use of genetic material has been the appropriation of the bodies of uninformed, unwilling Americans (largely poor and of color) for use in research, and the outright experimentation upon people while alive, and without their permission. Obviously, greater genetic literacy is necessary for all Americans, but particularly those whose DNA has already become the center of a tug-of-war between corporations, civil libertarians, scientists, and concerned citizens—because they have been treated, yet again, as products and as scientific chattel.

Why partner with libraries to provide the public with information about genetics? As we all know quite well, while public libraries are still stereotyped in the public imagination as repositories for books, they are also heavily utilized by low-income patrons and communities of color for Internet access––particularly job searching and résumé building. Libraries are also used by genealogists, and especially by new immigrants seeking to improve their English proficiency. In truth, librarians are on the front lines of new Internet technologies and social networking opportunities, as well as central to the lives of people currently underserved by defunded social programs. Public libraries and museums are accessible information centers that enjoy a high level of trust from the public in the authority and reliability of their information––second only to schools in importance for educating children.3

In the first year of the program, the librarians visited schools to give talks to students and sponsored an essay contest for young people. “Genetics 101,” a talk given by Dr. Jose Morales of Queens, New York, educates patrons about humanity’s African origins. The Community Conversations program was only to have lasted two years, but has been so popular that BPL sent its curricula to its branch libraries. It now serves as a model for libraries across the nation.

The program, presented at the 2010 ALA Annual Conference (by librarians Maxine Cooper, Angeli Rasbury, and Lisa Chow; and by Doris Withers, professor of biology and education at Medgar Evers College), has various pieces, such as DNA Day––a commemoration of the completion of the human genome sequence, on which students, teachers, and the public learn about genetics and genomics utilizing game show models (such as Jeopardy), book discussions, and workshops with technology. DNA Day at BPL allows patrons to gain access to health information, be informed about the misuse of genetic testing and the patenting of gene sequences, and understand their susceptibility to disease.

The Family Health History component, as part of the U.S. Surgeon General Family Health History Initiative, offers patrons a two-page family health checklist and portrait to fill out. The librarians explain that illness cannot be made 100 percent preventative with a health history (apparently a common misperception), but that with more awareness, a better diagnosis can be made. They also offer information on the fifteen leading causes of death (as of 2006) and stress the importance of diet and weight control, exercise, awareness of the causes of acne and depression, and the risks of African Americans with blue eyes. Many of those with blue eyes have a single common ancestor, from the Black Sea region around 10,000 years ago; the gene that causes the blue eyes actually only reduces the production of melanin by the adjacent gene, diluting humanity’s dominant, original brown eye color. Blue eyes in African Americans can also be caused by ocular albinism, especially in men, which is often accompanied by vision problems, as well as by a benign mutation, two differently colored eyes (Waardenburg Syndrome), or the fact of having Caucasians in one’s recent genetic past. Many communities of color also suffer disproportionately from obesity, and lack knowledge about health risks that are specific to them such as sickle cell anemia, which was not originally a disease.

There is the popular perception that whatever is genetic is set in stone. The librarians try to make patrons aware that multiple factors affect their family history: genes (heredity), environment, and behavior, and that each also plays a different role depending on the disease in question and upon their interactions with each other. Each factor can have a different importance in one disease over another. A family history is merely another tool that can save one’s life in an emergency situation; a finding of predisposition to a certain disease is not a death sentence, nor is a family history clear of, say breast cancer, any guarantee of continued health.

The book discussions component has proven to be the most popular, and like the other components of the program, is open to all ages. Among the books read include The Immortal Life of Henrietta Lacks by Rebecca Skloot, which tells the story of the first “immortal” cells grown in culture, taken from a poor tobacco farmer without her knowledge, in a family who was experimented upon without their consent, and who despite bequeathing genetic material for a multimillion dollar industry, saw no profits from it and could not even afford health insurance. The ethical and sociopolitical questions raised by this story, and the issue of consent in scientific experimentation, resonate deeply with many communities of color, who have often been the target of secret or enforced experimentation. It also highlights the lack of information about genetics in many vulnerable communities. (Henrietta’s daughter asked Skloot if her mother had felt any pain when scientists infected her mother’s cells with viruses and shot them into orbit.)

Other books include Our Family Tree: An Evolution Story by Lisa Westberg Peters; Genetics by Rebecca L. Johnson; The Stuff of Life: a Graphic Guide to Genetics and DNA by Zander Cannon, Kevin Cannon, and Mark Schultz; and National Geographic Investigates Genetics from DNA to Designer Dogs by Kathleen Simpson. As with the family health history component, the book discussions help patrons recognize so-called DNA testing operations.

In addition to these pieces, a representative from the American Civil Liberties Union spoke to patrons about the DNA database and the dangers of a monopoly on genetic testing. In fact, at this point BPL librarians no longer have to solicit speakers; instead speakers contact the library seeking opportunities to speak. Many grant-funded scientific projects have a community education requirement (which is something for librarians to keep in mind when they are looking for guest speakers, as they will often speak for no fee or honorarium).

The final component of the Community Conversations program is technology. Through interactive virtual labs, patrons of all ages can utilize games and podcasts geared to informing them about genetics. The National Human Genome Research Institute offers a live online chat with a scientist. Patrons can also search for existing and emerging careers in the field. Wikis, Flickr, Google Calendar, news feeds, and online discussions with archived transcripts are also employed.

BPL’s Human Genome Project Community Conversations model is a great resource should other librarians wish to initiate this at their own libraries.

The author gratefully acknowledges the Smithsonian Institution in Washington, D.C., for its contribution to this article.

REFERENCES

  1. Sewell Chan, “Bloomberg’s Plan: Tax Cuts, DNA Tests and an End to Social Promotion,” New York Times, Jan. 2, 2008, accessed Oct. 6, 2010, http://cityroom.blogs.nytimes.com/2008/01/17/bloombergs-plan-tax-cut-dna-tests-and-an-end-to-social-promotion.
  2. Sara Kugler, “NYC Mayor Advocates U.S. Worker Database,” Breitbart, May 24, 2006, accessed Nov. 29, 2010, www.breitbart.com/article.php?id=D8HQE6B80&show_article=1.
  3. Leah Arroyo, “Science on Faith at the Creation Museum,” Museum 86, no. 6 (Nov./Dec. 2007): 42–49.

ADDITIONAL RESOURCES

ALA Conference Materials Archive, “Celebrating National DNA Day at a Public Library: Reaching Out to the Community to Increase Awareness and Knowledge
about the Human Genome and Genetics,” accessed May 4, 2011, http://presentations.ala.org/index.php?title=Celebrating_National_DNA_Day_at_a_Public_Library.

Brooklyn Public Library, “Explore a Topic: Genetics and Genomics,” accessed Nov. 29, 2010, www.brooklynpubliclibrary.org/explore_topic_detail.jsp?subject
pageid=2409.

Alice Mack Dontanville and William Zeisel, The Human Genome Project Toolkit: Using Library Systems to Educate and Inform about Current Genomics Research and Its Implications, Libraries for the Future and the National Human Genome Research Institute, accessed May 4, 2011, www.brooklynpubliclibrary.org/pdf/genometoolkit.pdf.

National Human Genome Research Institute, “Genetics Education Resources for Teachers,” accessed Dec. 22, 2010, www.genome.gov/10005911.

———, “National DNA Day,” accessed May 7, 2011, www.genome.gov/10506367.

Surgeon General’s Family Health History Initiative, “My Family Health Portrait,” accessed Dec. 22, 2011, https://familyhistory.hhs.gov/fhh-web/home.action.

WE ACT for Environmental Justice, “The Human Genome Project—Community Conversations,” accessed Dec. 22, 2010, www.weact.org/Programs/EnvironmentalHealthCBPR/TheHumanGenomeProjectCommunityConversations/tabid/204/Default.aspx.



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