Genetic Ancestry Genetic Ancestry Testing and Societal Testing and Societal

ImplicationsImplicationsImplicationsImplications

Sandra Soo-Jin Lee, Ph.D.Center for Biomedical Ethics

Stanford University

M h 2 2007March 2, 2007

Changing Landscape Changing Landscape of Human Geneticsof Human Genetics

Genetic information is being analyzed for Genetic information is being analyzed for associations with a broad spectrum of medical associations with a broad spectrum of medical and nonand non medical conditions and traitsmedical conditions and traitsand nonand non--medical conditions and traits.medical conditions and traits.More focus has been placed on finding More focus has been placed on finding “meaningful difference” where ancestry is“meaningful difference” where ancestry ismeaningful difference where ancestry is meaningful difference where ancestry is believed to be importantbelieved to be importantIncreasingly products and services toIncreasingly products and services toIncreasingly, products and services to Increasingly, products and services to determine ancestry have become directly determine ancestry have become directly available to consumers.available to consumers.

Issues to addressIssues to addressIssues to addressIssues to address

What is the relationship between race andWhat is the relationship between race andWhat is the relationship between race and What is the relationship between race and ancestry?ancestry?How will commercially available geneticHow will commercially available geneticHow will commercially available genetic How will commercially available genetic ancestry tests affect notions of personal ancestry tests affect notions of personal identity and group membership?identity and group membership?identity and group membership?identity and group membership?What responsibilities come with offering What responsibilities come with offering

ti t t ti ?ti t t ti ?genetic ancestry testing?genetic ancestry testing?

We are all the sameWe are all the sameWe are all the sameWe are all the same

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

Pendulum Shift

What is “race”?What is “race”?What is race ? What is race ?

Understanding DifferenceUnderstanding DifferenceUnderstanding DifferenceUnderstanding Difference

What do genes tell us about What do genes tell us about ??identity?identity?

“.. when you define “.. when you define yourself one way andyourself one way andyourself one way and yourself one way and then at 50, there are then at 50, there are results that say you're results that say you're something else, it does something else, it does rock your whole world.” rock your whole world.” W J hW J hWayne JosephWayne Joseph

Cultural Significance of the GeneCultural Significance of the GeneCultural Significance of the GeneCultural Significance of the Gene

G ti i f ti h th ll fG ti i f ti h th ll fGenetic information has the allure of Genetic information has the allure of specificity and technological precisionspecificity and technological precisionIndividuals often turn to genetic Individuals often turn to genetic information to validate one’s sense of information to validate one’s sense of self and predict one’s futureself and predict one’s futureGenetic information often trumps other Genetic information often trumps other ppsources of identity formationsources of identity formation

How will commercially available genetic How will commercially available genetic t t t ff t ti f lt t t ff t ti f lancestry tests affect notions of personal ancestry tests affect notions of personal

identity and group membership?identity and group membership?

May call into question other sources for May call into question other sources for identify formationidentify formationidentify formationidentify formationMay reinforce genetically determined May reinforce genetically determined

ti f d i l diffti f d i l diffnotions of race and racial differencenotions of race and racial differenceMay be used for social and political means May be used for social and political means (college admissions, tribal membership, (college admissions, tribal membership, reparations for slavery; refugee status)reparations for slavery; refugee status)

What responsibilities come with geneticWhat responsibilities come with geneticWhat responsibilities come with genetic What responsibilities come with genetic ancestry testing?ancestry testing?

Privacy and confidentialityPrivacy and confidentialityPrivacy and confidentialityPrivacy and confidentialityDisclosing the limitations of technologiesDisclosing the limitations of technologiesInterpreting resultsInterpreting resultsInterpreting resultsInterpreting resultsProviding genetic counselingProviding genetic counseling

The danger of selling ancestry The danger of selling ancestry t ti “ ti lt ti “ ti ltesting as “recreational testing as “recreational

genetics”genetics”geneticsgenetics