Microsoft PowerPoint - Lee - GenePOPS 6.ppt [Compatibility Mode]

Genetic Ancestry Testing and Societal Implications Sandra Soo-Jin Lee, Ph.D. Center for Biomedical Ethics Stanford University March 2, M h 2 2007

Changing Landscape of Human Genetics Genetic information is being analyzed for associations with a broad spectrum of medical and non-medical conditions and traits non- traits. More focus has been placed on finding “meaningful difference” where ancestry is meaningful difference believed to be important Increasingly, Increasingly products and services to determine ancestry have become directly available to consumers.

Issues to address What is the relationship between race and ancestry? How will commercially available genetic ancestry tests affect notions of personal identity and group membership? What responsibilities come with offering genetic ancestry testing? ti t t ti ?

We are all the same “After all, I believe one of the great truths to emerge from this triumphant expedition inside the human genome is that in genetic terms all human beings, regardless of race, are more than 99.9 percent the same. What that means is that th t modern science h confirmed what we fi t d i has fi d h t first learned from ancient faiths. The most important fact of life on this earth is our common humanity.” President Clinton, White House Remarks on the Human Genome Project, June 27, 2000

Pendulum Shift

What is “race”? race ?

Understanding Difference

What do genes tell us about identity? ? “.. when you define yourself one way and then at 50, there are results that say you're something else, it does rock your whole world.” Wayne Joseph W J h

Cultural Significance of the Gene Genetic information has th allure of G ti i f ti h the ll f specificity and technological precision Individuals often turn to genetic information to validate one’s sense of self and predict one’s future Genetic information often trumps other p sources of identity formation

How will commercially available genetic ancestry tests affect notions of personal t t t ff t ti f l identity and group membership? May call into question other sources for identify formation May reinforce genetically determined notions of race and racial diff ti f d i l difference May be used for social and political means (college admissions, tribal membership, reparations for slavery; refugee status)

What responsibilities come with genetic ancestry testing? Privacy and confidentiality Disclosing the limitations of technologies Interpreting results Providing genetic counseling

The danger of selling ancestry testing t ti as “recreational “ ti l genetics genetics”

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