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7/29/2019 Ethics of DNA Databasing
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Ethics of DNA DatabasingJarrod Slavinskas
Felicia H.William D.
3/28/2013 DNA Databasing 1
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Thesis
Studying
Disease
Expanding
Access to DNA
data
Consequences:
Data Theft
Discrimination
Cost
Benefits:
Reducing False
Convictions
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Reduction of False Convictions
Database in
operation
Date of
introduction
Database in
preparation
Date of
legislation (date
of planned
operation)
UK April 1995 France
June 1998 (no
operational
details yet)
The Netherlands 1997 BelgiumMay 1999 (end of
2000)
Austria October 1997 SwedenApril 1999
(September 2000)
Germany April 1998 Spain In preparation
Finland September 1999 Italy In preparation
Norway End of 1999
Denmark July 2000
Switzerland July 20003/28/2013 DNA Databasing 3
http://www.sciencedirect.com/science/article/pii/S0379073800004357http://www.sciencedirect.com/science/article/pii/S03790738000043577/29/2019 Ethics of 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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http://www.pbs.org/wgbh/pages/frontline/shows/case/cases/http://www.pbs.org/wgbh/pages/frontline/shows/case/cases/http://www.pbs.org/wgbh/pages/frontline/shows/case/cases/7/29/2019 Ethics of DNA Databasing
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Reduction of False Convictions
Roy Criner
Rape and Murder
99 years
Joseph Rodger ODell
Murder, Rape, Sodomy
Life Sentence
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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 believethey will have to pay over Kalanit's lifetime for her care.
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http://www.dailymail.co.uk/news/article-2112708/Deborah-Ariel-Levy-Portland-couple-sues-Legacy-Heath-wrongful-birth-daughter-born-Down-syndrome.html7/29/2019 Ethics of DNA Databasing
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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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Accessibility
Hypotheticals:
o Knowledge of diseases before contracted
o Tailored Medicine instead of broad drugs for certain
diseases like Advil
o Speedo Unable to communicate in a critical situation
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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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http://www.nytimes.com/2003/01/23/business/personal-data-is-pirated-from-russian-phone-files.html7/29/2019 Ethics of DNA Databasing
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Data Theft
Case Study:
Iceland passed a bill in 1998to create a centralized DNA database of itscitizens.
People may opt out of the database but the previous information beforethe withdrawal will stay in the database.
Iceland gave an exclusive contract to deCODE which allowed the company
full access of the Icelandic peoples records.
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http://www.actionbioscience.org/genomic/hlodan.htmlhttp://www.actionbioscience.org/genomic/hlodan.html7/29/2019 Ethics of DNA Databasing
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Tay-Sachs Disease
Mainly found in the Jewish population.
Discrimination
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Sickle Cell Anemia
Mainly found in the African American population.
About 1 in 12 have sickle cell traits.
Discrimination
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Discrimination
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http://www.youtube.com/watch?v=rTStQ0Rqvgg7/29/2019 Ethics of 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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WorldPopulation:
7,004,077,813
Cost PerPerson: $2.7
billion
EstimatedCost:
$1.891e19
World:
USAPopulation:313,279,663
Cost PerPerson:
$2.7billion
EstimatedCost:
$8.458e17
USA:
Estimated Cost of Human GenomeProject
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Conclusion
Benefits
Reduction of
FalseConvictions
Study of Disease
Consequences
Possibility ofTheft
Discrimination
Accessibility Cost
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