1. Genomitieto ja kuluttajille suunnatut
genomitietopalvelut
Keskustelutilaisuus “Mitä perimäni kertoo?”
6.3.2014 Helsinki
järj. Suomen Lääkintäoikeuden ja -etiikan seura SLOE ry
Marja Pirttivaara
FT, MBA (sosiaali- ja terveysjohtaminen)
Johtava asiantuntija, Sitra
Marja Pirttivaara 2014-03-06

2. Duodecim 2006;122:63–8
http://www.terveysportti.fi/xmedia/duo/duo95417.pdf
Marja Pirttivaara 2014-03-06

3. Kuluttajille suunnattuja DNA-testejä tarjoavia yrityksiä 1/4
•
23andMe (adoption, deep ancestry, ethnicity, genealogy, health)
•
African Ancestry (deep ancestry)
•
AfricanDNA (FTDNA affiliate) (deep ancestry, ethnicity, genealogy)
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AncestrybyDNA (deep ancestry, ethnicity)
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AncestryDNA, a subsidiary of Ancestry.com (adoption, ethnicity, genealogy)
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BritainsDNA (formerly Ethnoancestry) (deep ancestry, ethnicity)
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DNA Ancestry and Family Origin (FTDNA affiliate in the Middle East) (adoption, deep
ancestry, full mtDNA sequencing, genealogy)
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DNA Consultants (deep ancestry, ethnicity)
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DNAme (deep ancestry, ethnicity)
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DNA DTC (research, health, whole genome sequencing)
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DNA Spectrum (ethnicity)
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DNA Tribes (ethnicity)
http://www.isogg.org/wiki/List_of_DNA_testing_companies
Marja Pirttivaara 2014-03-06

4. Kuluttajille suunnattuja DNA-testejä tarjoavia yrityksiä 2/4
•
DNA Worldwide (FTDNA affiliate) (deep ancestry, ethnicity, genealogy, paternity, relationship)
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Ethnoancestry - see BritainsDNA
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Family Tree DNA (adoption, deep ancestry, full mtDNA sequencing, genealogy, identity, relationship)
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Full Genomes Corporation (full Y-chromosome sequencing)
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Gene by Gene - the parent company of Family Tree DNA, DNATraits, DNADTC and DNAFindings
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Genebase (deep ancestry, genealogy)
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Genographic Project (deep ancestry, ethnicity)
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iGENEA (FTDNA affiliate) (deep ancestry, genealogy)
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IrelandsDNA - See BritainsDNA (formerly Ethnoancestry)
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Oxford Ancestors (deep ancestry, genealogy)
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Roots for Real (deep ancestry, ethnicity, genealogy)
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ScotlandsDNA - (formerly Ethnoancestry) (deep ancestry, ethnicity)
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Sorenson Genomics (laboratory services)
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YorkshiresDNA - See BritainsDNA (formerly Ethnoancestry)
•
YSEQ (custom Y-SNPs)
http://www.isogg.org/wiki/List_of_DNA_testing_companies
Marja Pirttivaara 2014-03-06

5. Kuluttajille suunnattuja DNA-testejä tarjoavia yrityksiä 3/4
•
Paternity/relationship testing companies
•
There are a number of testing companies who specialise in paternity, relationship, identity, forensic
and immigration testing. Some of these companies also offer deep ancestry and ethnicity testing as a
secondary product:
•
Determigene (deep ancestry, paternity, immigration, infidelity, relationship)
•
DNA Reference Laboratory (deep ancestry, forensic, immigration, paternity, relationship)
•
DNA Diagnostics Center (US) and DNA Diagnostics Centre (UK) (deep ancestry, forensic, identity,
immigration, paternity, prenatal paternity, relationship) - the parent company of AncestrybyDNA and
the laboratory used by DNA Tribes
•
DNAFindings (immigration, paternity, relationship)
•
DNA Solutions (deep ancestry, paternity, relationship)
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easy-DNA.com (US); easydna.co.uk (UK); easydna.com.au (Australia) (deep ancestry, ethnicity,
paternity, prenatal paternity, siblingship)
•
Genetic Testing Laboratories
•
Indian Biosciences (ethnicity, health, immigration, paternity, relationship)
•
International Biosciences (deep ancestry, paternity, relationship)
•
Nimble Diagnostics (deep ancestry, ethnicity, paternity, relationship)
http://www.isogg.org/wiki/List_of_DNA_testing_companies
Marja Pirttivaara 2014-03-06

6. Kuluttajille suunnattuja DNA-testejä tarjoavia yrityksiä 4/4
•
DNA testing companies no longer trading
•
Argus BioSciences (deep ancestry, full mtDNA sequencing)
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Cambridge DNA Services (Internet Archive version) (deep ancestry, ethnicity)
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DNA Bioscience (genealogy, immigration, paternity, relationship)
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DNA-Fingerprint (acquired by Family Tree DNA in 2006
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DNA Heritage (acquired by Family Tree DNA in April 2011 (deep ancestry, genealogy)
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DNAPrint Genomics (ethnicity)
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Family Builder (Internet Archive version from February 2010)[1] (deep ancestry, genealogy)
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Family Genetics (UK) (deep ancestry, genealogy)
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GeneTree (acquired by AncestryDNA) in 2012 (deep ancestry, genealogy)
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Geogene
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Relative Genetics (taken over by AncestryDNA) (deep ancestry, genealogy)
•
Sorenson Molecular Genealogy Foundation (acquired by AncestryDNA in 2012) (deep ancestry,
genealogy)
http://www.isogg.org/wiki/List_of_DNA_testing_companies
Marja Pirttivaara 2014-03-06

7. Neljä suurta
• Family Tree DNA
• www.familytreedna.com
• 23andMe
• www.23andme.com
• Ancestry
• www.ancestry.com
• National Geographic
• genographic.nationalgeographic.com
Marja Pirttivaara 2014-03-06

8. Kuluttajille suunnattujen genomitietopalvelujen
businessmalleista
http://www.sitra.fi/julkaisut/muut/Kuluttajille
_suunnatut_genomitietopalvelut_ja_niiden_lii
ketoimintamallit.pdf
Marja Pirttivaara 2014-03-06

9. Promethease & SNPedia tietokanta
esimerkki omatoimisesta tiedonlouhinnasta
http://www.snpedia.com/index.php/Rs1815739
http://snpedia.com/index.php/Rs6591536
Marja Pirttivaara 2014-03-06

10. Tutkimustietoa kuluttajille suunnattujen geenitestien etiikasta
(direct-to-consumer, DTC)
• S. Tamir: Direct-to-consumer genetic testing: ethical-legal perspectives and
practical considerations, Med Law Rev. 2010 Spring;18(2):213-38.
• JS Roberts, J Ostergren: Direct-to-Consumer Genetic Testing and Personal
Genomics Services: A Review of Recent Empirical Studies, Curr Genet Med
Rep. 2013 Sep;1(3):182-200.
• A Harris, SE Kelly, S Wyatt: Counseling customers: emerging roles for genetic
counselors in the direct-to-consumer genetic testing market. J Genet Couns.
2013 Apr;22(2):277-88.
Marja Pirttivaara 2014-03-06

11. Eettisiä kysymyksiä
• Kuka omistaa genomitiedon?
• Oikeus tietää ja oikeus olla tietämättä
• Tiedon yksityisyys ja jakaminen: “geneettinen yksityisyys”
• Henkilön identifiointimahdollisuus
• Vaikutukset biologisten sukulaisten kannalta
• Informointimahdollisuus: sairauksien ja riskien löytyminen tulevaisuudessa
LUOTTAMUS JA KUNNIOITUS
• HumGen international database on ethical, legal and social issues in human
genetics http://www.dtcgenetest.org/
• ISOGG International Society of Genetic Genealogy, Ethics pages:
http://www.isogg.org/wiki/Ethics
Marja Pirttivaara 2014-03-06

12. Kiitos!
marja.pirttivaara@sitra.fi
www.isogg.org
Marja Pirttivaara 2014-03-06