Ethics of DNA Databasing

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/S0379073800004357


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Earl Washington

Convicted for murder

Life Sentence

Clyde Charles

Convicted for Sexual Assault

Life Sentence

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/


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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.

http://www.dailymail.co.uk/news/article-2112708/Deborah-Ariel-Levy-Portland-couple-sues-Legacy-Heath-wrongful-birth-daughter-born-Down-syndrome.html


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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

http://www.nytimes.com/2003/01/23/business/personal-data-is-pirated-from-russian-phone-files.html


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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.

http://www.actionbioscience.org/genomic/hlodan.htmlhttp://www.actionbioscience.org/genomic/hlodan.html


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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

http://www.youtube.com/watch?v=rTStQ0Rqvgg


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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


Ethics of DNA Databasing

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