Listening to Communities: Genetic Exceptionalism and Public - - PowerPoint PPT Presentation

Listening to Communities: Genetic Exceptionalism and Public Perceptions

Nanibaa’ Garrison, PhD Center for Biomedical Ethics and Society Vanderbilt University Genomics and Ethics in Research and Medical Decision Making Cincinnati, OH March 12, 2015

Genetic Exeptionalism Claims

1) Genetic information can predict a person’s medical future 2) Genetic test results divulge information about family members 3) Genetic information can be used to discriminate against and stigmatize individuals 4) Genetic testing can cause serious psychological harms

Green and Botkin (2003)

Claim 1: Predict one’s medical future

• Prenatal and newborn genetic

testing

• Family histories (including medical)

are far more predictive

Claim 2: Impact on families

• Sharing genetic results vs.
• ther medical results with family

members

• Privacy considerations of DNA
• r other data
• Identification of family members

based on genetic similarities

Claim 3: Discriminate and Stigmatize

• Dissemination of scientific

results without community input

• “Inbreeding” results from

Havasupai tribe

• “Alcoholism” results from a tribe

in Barrow, Alaska

New York Times 2010

Claim 4: Serious psychological harm

• “Body fragmentation” as

separation of body parts/cells from self

• Scientific evidence that contradict
• rigin beliefs

New York Times 2010

Shift towards “Distinctiveness”

• DNA can be used to make

some predictions or identify individuals

• Can be used to predict one’s

future, and also ancestral past

• How distinct is genetic

information?

Predictions of what people look like using a DNA analysis tool compared with photos

• f the actual people.

Credit The New York Times; Images and renderings by Mark D. Shriver/Penn State University

Thank you!

• Kyle Brothers
• Aaron Goldenberg