Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor black tobacco farmer whose cells—taken without her knowledge in 1951—became one of the most important tools in medicine, vital for developing the polio vaccine, cloning, gene mapping, in vitro fertilization, and more. Henrietta’s cells have been bought and sold by the billions, yet she remains virtually unknown, and her family can’t afford health insurance. Soon to be made into an HBO movie by Oprah Winfrey and Alan Ball, this New York Times bestseller takes readers on an extraordinary journey, from the “colored”
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Rebecca Skloot
resourceresearchProfessional Development, Conferences, and Networks
For forty years between 1932 and 1972, the U.S. Public Health Service (PHS) conducted an experiment on 399 black men in the late stages of syphilis. These men, for the most part illiterate sharecroppers from one of the poorest counties in Alabama, were never told what disease they were suffering from or of its seriousness. Informed that they were being treated for “bad blood,”1 their doctors had no intention of curing them of syphilis at all. The data for the experiment was to be collected from autopsies of the men, and they were thus deliberately left to degenerate under the ravages of
This study was conducted as part of the formative evaluation of the NISE Network Forum Nanomedicine in Healthcare. The purpose of the forum was to bring members of the public together to discuss the conditions under which nanotechnology applications in medicine and personal care products should be made available to the public. During the forum, participants learned about nanotechnology and its societal and ethical impacts from expert speakers, had chance to ask questions of the experts, participated in a small group discussion in which they talked about the pros and cons of releasing
The NISE Network Forums were created to provide an in-depth learning experience that would (1) enhance participants' understanding of nano and its potential impacts; (2) increase participants' confidence in participating in public discourse about nanotechnologies; and (3) build informal science educators' knowledge and ability to conduct this type of programming at their institution (NISE Network Public Forums Manual, 2007). In an effort to reach out to a more diverse audience, the NISE Network Forums Team translated into Spanish the existing NISE Net forum "Nanomedicine in Healthcare" to
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Elizabeth KollmannJane MorganNanoscale Informal Science Education NetworkRoxana del Campo
RK&A was contracted by Save Ellis Island (SEI) to conduct a front end evaluation, funded by a National Endowment for the Humanities planning grant. The objective for the evaluation was to examine Ellis Island's visitors' overall responses to the exhibit concepts, themes, and interpretive approaches for SEI's planned interpretation of Ellis Island's hospital and other medical facilities located on Ellis Island. RK&A first participated in planning meetings with SEI and their team of consultants to explore ideas for interpreting the medical facilities of Ellis Island. Upon reviewing the
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Randi Korn & Associates, Inc.Save Ellis Island
resourceresearchProfessional Development, Conferences, and Networks
This is the opening talk of the session titled "Impacts of Citizen Science," delivered on day two of the Citizen Science Toolkit Conference at the Cornell Lab of Ornithology in Ithaca, New York on June 20-23, 2007. Stephen Baillie, Director of Populations Research at the British Trust for Ornithology (BTO), shares examples of how research and monitoring undertaken by the BTO, based largely on volunteer surveys, has had an impact on conservation and environment policy in the U.K. Specifically, Baillie discusses a project related to the conservation of farmland birds and work on Avian Influenza.
This article provides commentary about the early closing of "Imaginary Coordinates," an exhibition at the Spertus Institute in Chicago, inspired by the antique maps of the Holy Land. The exhibition reportedly closed early because some groups found it "anti-Israel." Featured voices include exhibition curator Rhoda Rosen, Marc Fischer, of the Chicago-based design firm Temporary Services, and artist Michael Rakowitz. The materials gathered for this article present a microcosm of the museum community's struggle with "the unexhibitable" among other challenging museum issues.
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National Association of Museum Exhibition
The Museum of Science, Boston will develop an exhibit about Aging. It will be a 6000 sq. ft. traveling exhibit that will open in Boston during April, 2000 coinciding with the United Nations' International Year of Older Persons. The exhibit will provide visitors with an engaging and interactive environment in which to explore scientific, personal, and social aspects of aging. This exhibit will put a spotlight on the remarkable change that has been occurring as a result of in the increased survival rates for people of all ages contributing, among other things, to an increase in the number of older adults. This exhibit will be organized around four themes that will engage visitors in the exploration of the basic scientific research and impact of this change in demographics. The themes are: 1) the biological research that is seeking to understand how and why all living things age, 2) the impact of the physiological and psychological effects of the aging process of humans, 3) the influence of personal, social, and cultural factors on an individual's aging process and 4) the demographic, economic and public policy aspects of aging. There will be a number of complementary programs developed which will be packaged in a tool kit format that will permit museums borrowing the exhibit to develop those components that are allowed by their resources. These programs include a museum theater production that will invite visitors to think about aging in the context of their own society/culture; a world-wide-web resource to assist teachers and other community educators; and a series of multigenerational one-day programs to encourage interactions between different generations within a family or participating group. The exhibit will provide an opportunity for linkage with the needs of the formal education community. Its content addresses important parts of the formal science education curriculum as identified in the National Science Education Standards, Science for All Americans, and Benchmarks for Science Literacy.
This funding is for a planning phase of the Genome Radio Project, a multifaceted project that will produce 17 1/2 hours of radio programming, plus a variety of printed and electronic ancillary materials, exploring the science and social implications of human genetic research. The planning grant will enable the project team to develop further five key areas: o To work with advisors to define their process of editorial oversight and their involvement in the program ppoduction process; o To produce a half-hour documentary pilot program; o To use the pilot program to solidify distribution agreement with networks and major market stations; o To develop ancillary materials to accompany the pilot program and to determine mechanisms for the distribution of these materials; and o To conduct focus group evaluation of the pilot program and to define specific evaluation plans for the broader series.
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TEAM MEMBERS:
Barinetta ScottMatt BinderJudith Thilman
The Museum of Science and Industry will develop "Genetics: Decoding Life," a 4325 sq. ft. permanent exhibit about the basic principles of genetics, the Human Genome Project, new tools and technology to study life, and the biomedical and biotech applications resulting from genetic information. As a result of interacting with this exhibit, visitors will understand the basic principles of genetics, they will become familiar with the role of genes in the development of life, they will learn something about how and why scientists used genetic tools, and visitors will become aware of applications of these principles and the potential social, ethical, medical and economic outcomes. In addition to the exhibit there will be a number of complementary outreach programs. An electronic web site will be created, software used in the exhibit will be modified into a format suitable for use in schools, computers loaded with genetic programs will be loaned to Chicago public school groups, churches and other community agencies, and the content of the exhibit will be used to enhance special Lamaze and prenatal classes held at the museum. Special consideration will be given to developing the relationship between the project personnel and the staff of the Chicago Systemic Initiative. They will work together to produce a school program about genetics that will be suitable for grades 5 to 8. School materials will include a teacher's guide for the exhibit, a program of classroom activities, and materials to be used before and after a trip to the museum to see the exhibit.
The Genome Radio Project, through the Pacifica Foundation, will produce nine one-hour radio documentaries and a live two-hour Town Hall on current genome research. The goals of the project are: o to provide background information on the theories and techniques of human genetic science, o to raise the social, ethical, and legal issues and concerns associated with human genetic research, and o to provide an opportunity for the public to interact with the scientific experts and policy makers. The specific programs include: o DNA and Behavior: Is Our Fate in Our Genes? o Prenatal Genetic Testing: Better Babies Through Science? o Gene Testing; Do You Really Want to Know Your Future? o Gene Therapy: Medicine For Your Genes. o DNA and the Law o The Commercialization of Genetic Information o Eugenics, Past and Present o Race, Evolution, and Philosophy in the Age of Genetics o The Human Genome Project: Roadmap to the Human Body The radio programs will be supplemented by a variety of printed and electronic ancillary materials exploring the science, ethics, and social impact of human genetic research. The project will be under the Bari Scott who will serve as PI. She has most recently been Executive Producer for The Telecommunication Radio Project. The Co-PI's will be Mat Binder, an Independent radio producer and instructor at the University of California, and Jude Thilman, the Project Director/Host of The communications Revolution, the nationally syndicated, live series on new telecommunications technologies. The principal consultants responsible for the science content of the project will be Sylvia Spengler, Deputy Director of The Lawrence Berkeley Laboratory Human Genome Center and Lane Conn, Coordinator of the Human Genome Education program at the Stanford University Human Genome Center. The science consultants and production staff will work closely with approximately thirty genome scientists nationwide who have formally agreed to advise the project.
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TEAM MEMBERS:
Barinetta ScottJudith ThilmanMatt Binder
A new, permanent exhibition at the San Diego Museum of Man will reflect the great scientific strides made in unraveling the mysteries of our uniquely human biology. The exhibit of 7,000 sq. ft. will take visitors on a 65-million year journey through time and even go beyond the present with glimpses of current technologies which will shape the future of human evolution. The exhibit development is being guided by a team of renowned scholars, museum professionals and community members in order to insure that the material is scientifically accurate, current and comprehensive. Evaluation and community input combined with engaging exhibitry will further enhance the informal science learner's experience. The exhibit will be about time, genetics and the environment. Dioramas, casts, artifacts and engaging interactives will convey the storyline. As a result of the development of culture, technology is refined and becomes intertwined with the human evolution. The exhibit will unify and draw together other halls in the museum. Further hands-on discovery will be encouraged in an outdoor archaeological site. Associated programming, which will foster the integration of research and education, will include a lecture series, on-line chats and guidebooks, as well as resources for teachers and students.