ELSI

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WikiDoc Resources for ELSI

Articles

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Articles on ELSI in N Eng J Med, Lancet, BMJ

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Evidence Based Medicine

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Clinical Trials

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Guidelines / Policies / Govt

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Commentary

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Definitions

Definitions of ELSI

Patient Resources / Community

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Directions to Hospitals Treating ELSI

Risk calculators and risk factors for ELSI

Healthcare Provider Resources

Symptoms of ELSI

Causes & Risk Factors for ELSI

Diagnostic studies for ELSI

Treatment of ELSI

Continuing Medical Education (CME)

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International

ELSI en Espanol

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Business

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Experimental / Informatics

List of terms related to ELSI


Overview

ELSI stands for Ethical, Legal and Social Issues. It's a term associated with the Human genome project. This project didn't only have the goal to identify all the approximately 24.000 genes in the human DNA, but also to address the ELSI that might arise from the project.

5% of the US annual Human genome project (HGP) funds is allocated to address associated ELSI of the work.


The failure of ELSI to help the impacted groups

As Debra Harry, Executive Director of the Indigenous Peoples Council on Biocolonialism (IPCB), would explain; despite a decade of ELSI funding, the burden of genetics education has fallen on the tribes themselves to understand the motives of Human genome project and its potential impacts on their lives.

Meanwhile, the government has been busily funding projects studying indigenous groups, without any meaningful consultation with the group. (See Biopiracy)

The main criticism of ELSI is the failure to address the conditions raised by population-based research, especially with regard to unique processes for group decision-making and cultural worldviews. Genetic variation research such as HGP is group population research, but most ethical guidelines, as Harry mentions, are not euipped to address group rights. She is making such claim because those research represents a clash of culture: indigenous people's life revolves around collectivity and group decision making whereas the Western culture promotes individuality.

Harry suggests that one of the challenges of ethical research is to include respect for collective review and decision making, while also upholding the traditional model of individual rights.

References

Ms. Harry's comments of the International Forum on Globalization Teach-in held in New York City in February 2001 were based on her recent article, Biopiracy and Globalization: Indigenous Peoples Face a New Wave of Colonialism, published in the magazine Splice, January/April 2001 Volume 7 Issues 2 & 3 ([1])

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