Ethics of DNA Databasing

Jarrod Slavinskas Felicia H. William D.

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DNA Databasing

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Thesis
Benefits: Reducing False Convictions Studying Disease Expanding Access to DNA data Consequences:

Data Theft Discrimination
Cost

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Reduction of False Convictions
Database in operation Date of introduction Database in preparation
Date of legislation (date of planned operation) June 1998 (no operational details yet) May 1999 (end of 2000) April 1999 (September 2000) In preparation In preparation

UK

April 1995

France

The Netherlands Austria Germany Finland Norway Denmark Switzerland
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1997 October 1997 April 1998 September 1999 End of 1999 July 2000 July 2000

Belgium Sweden Spain Italy

DNA Databasing

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Reduction of False Convictions

Earl Washington Convicted for murder Life Sentence

Clyde Charles Convicted for Sexual Assault Life Sentence
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Reduction of False Convictions

Roy Criner Rape and Murder

99 years

Joseph Rodger O’Dell

Murder, Rape, Sodomy
Life Sentence

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DNA Databasing

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Study of Disease
• Case Study:
    Ariel and Deborah Levy Portland, Oregon Legacy Emanuel Hospital & Health Center Claim conducted a botched test, for $3 million - the amount they believe they will have to pay over Kalanit's lifetime for her care.

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Study of Disease
• Human Genome Project • Studies began providing benefits before the project was completed. • Studies showed predisposition of:

 Breast cancer
 Cystic fibrosis

 Liver disease

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DNA Databasing

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Accessibility
• Hypotheticals: o Knowledge of diseases before contracted o Tailored Medicine instead of broad drugs for certain diseases like Advil o Speed o Unable to communicate in a critical situation

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DNA Databasing

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Consequences: Data Theft
• Mobile Telesystems (Russian) • Security breach that led to pirated CD's • Contained its entire database of five million customers

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DNA Databasing

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Data Theft
• Case Study:

Iceland passed a bill in 1998 to create a centralized DNA database of it’s citizens.  People may opt out of the database but the previous information before the withdrawal will stay in the database.  Iceland gave an exclusive contract to deCODE which allowed the company full access of the Icelandic people’s records.

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DNA Databasing

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Discrimination

Tay-Sachs Disease
Mainly found in the Jewish population.

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DNA Databasing

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Discrimination

Sickle Cell Anemia
•Mainly found in the African American population. •About 1 in 12 have sickle cell traits.

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Discrimination

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DNA Databasing

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Cost
• Human Genome Project:
– 30,000 unique genes out of hundreds of thousands – Human chromosomes range from 50 million to 300 million base pairs – Cost of 2.7 billion dollars to sequence one set of DNA

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Estimated Cost of Human Genome Project
World:

World Population: 7,004,077,813

Cost Per Person: $2.7 billion

Estimated Cost: $1.891e19

USA: Cost Per Person: $2.7 billion

USA Population: 313,279,663

Estimated Cost: $8.458e17

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DNA Databasing

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Conclusion
Benefits
Reduction of False Convictions

Consequences

Possibility of Theft

Study of Disease

Discrimination

Accessibility

Cost

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DNA Databasing

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