Academic journal article The Hastings Center Report

Saber Es Poder

Academic journal article The Hastings Center Report

Saber Es Poder

Article excerpt

Genetic research and the knowledge that derives from it often remain sequestered in the hands of a few. Those who discuss and deliberate their meanings may acknowledge their importance to everyday people, but they often lack the mechanisms to broadcast what they learn to the communities that could benefit most. How to make developments in genetic science public so that their benefits and dangers are known, and so that debates about them can occur, has not always been clear. Somehow people must be taught what those developments mean to their bodies and their civil liberties, without getting led astray by the polarizing rhetoric about brave new worlds and post-human futures.

Over the last two years, the Washington Heights-Inwood Gene Project Coalition in New York City has been conducting a project to determine, through surveys and focus groups, what the mostly Latino and African-American residents of Inwood and Washington Heights--Manhattan neighborhoods that project coordinators refer to as "underserved"--know about genetics, what they need to learn, and what their attitudes to genetic interventions are. The Coalition was formed with the sponsorship of the Health Resources and Services Administration/March of Dimes collaborative project on genetic literacy, in collaboration with other organizations, such as Genetic Alliance and Family Voices. Smaller coalitions at the community level assessed what the people's needs are and developed educational strategies and training programs to meet them.

The coalition recently held a community meeting at the Morgan Stanley Children's Hospital at the Columbia Presbyterian Medical Center to announce its findings. …

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