2014 03-06 sloe-marja-pirttivaara-geenitestit_etiikka

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

Duodecim 2006;122:63–8 http://www.terveysportti.fi/xmedia/duo/duo95417.pdf


• 23andMe (adoption, deep ancestry, ethnicity, genealogy, health)

• African Ancestry (deep ancestry)

• AfricanDNA (FTDNA affiliate) (deep ancestry, ethnicity, genealogy)

• AncestrybyDNA (deep ancestry, ethnicity)

• AncestryDNA, a subsidiary of Ancestry.com (adoption, ethnicity, genealogy)

• BritainsDNA (formerly Ethnoancestry) (deep ancestry, ethnicity)

• DNA Ancestry and Family Origin (FTDNA affiliate in the Middle East) (adoption, deep ancestry, full mtDNA sequencing, genealogy)

• DNA Consultants (deep ancestry, ethnicity)

• DNAme (deep ancestry, ethnicity)

• DNA DTC (research, health, whole genome sequencing)

• DNA Spectrum (ethnicity)

• DNA Tribes (ethnicity)

Kuluttajille suunnattuja DNA-testejä tarjoavia yrityksiä 1/4

http://www.isogg.org/wiki/List_of_DNA_testing_companies


http://www.isogg.org/wiki/23andMe

http://www.africanancestry.com/

http://www.africandna.com/

http://www.isogg.org/wiki/Family_Tree_DNA

http://www.isogg.org/wiki/AncestrybyDNA

http://www.isogg.org/wiki/AncestryDNA

http://www.isogg.org/wiki/BritainsDNA

http://www.dnaancestry.ae/


http://dnaconsultants.com/

http://www.isogg.org/wiki/DNAme

http://www.dnadtc.com/

http://www.dnaspectrum.com/

http://www.isogg.org/wiki/DNA_Tribes

• DNA Worldwide (FTDNA affiliate) (deep ancestry, ethnicity, genealogy, paternity, relationship)

• Ethnoancestry - see BritainsDNA

• Family Tree DNA (adoption, deep ancestry, full mtDNA sequencing, genealogy, identity, relationship)

• Full Genomes Corporation (full Y-chromosome sequencing)

• Gene by Gene - the parent company of Family Tree DNA, DNATraits, DNADTC and DNAFindings

• Genebase (deep ancestry, genealogy)

• Genographic Project (deep ancestry, ethnicity)

• iGENEA (FTDNA affiliate) (deep ancestry, genealogy)

• IrelandsDNA - See BritainsDNA (formerly Ethnoancestry)

• Oxford Ancestors (deep ancestry, genealogy)

• Roots for Real (deep ancestry, ethnicity, genealogy)

• ScotlandsDNA - (formerly Ethnoancestry) (deep ancestry, ethnicity)

• Sorenson Genomics (laboratory services)

• YorkshiresDNA - See BritainsDNA (formerly Ethnoancestry)

• YSEQ (custom Y-SNPs)




http://www.dna-worldwide.com/




http://www.isogg.org/wiki/Full_Genomes_Corporation

http://www.isogg.org/wiki/Gene_by_Gene


http://www.isogg.org/wiki/Genebase

http://www.isogg.org/wiki/Genographic_Project

http://www.igenea.com/



http://www.isogg.org/wiki/Oxford_Ancestors

http://www.rootsforreal.com/

http://www.isogg.org/wiki/ScotlandsDNA

http://www.isogg.org/wiki/Sorenson_Genomics


http://www.yseq.net/

• 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)

• 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.determigene.com/

http://www.dnareferencelab.com/

http://www.dnacenter.com/

http://www.dna-bioscience.com/

http://www.isogg.org/wiki/AncestrybyDNA

http://www.isogg.org/wiki/DNA_Tribes

https://www.dnafindings.com/

http://www.isogg.org/wiki/DNA_Solutions

http://www.easy-dna.com/

http://www.easydna.co.uk/

http://www.easydna.com.au/

http://www.gtldna.com/

http://www.inbdna.com/

http://www.ibdna.com/

http://www.nimblediagnostics.co.uk/

• DNA testing companies no longer trading

• Argus BioSciences (deep ancestry, full mtDNA sequencing)

• Cambridge DNA Services (Internet Archive version) (deep ancestry, ethnicity)

• DNA Bioscience (genealogy, immigration, paternity, relationship)

• DNA-Fingerprint (acquired by Family Tree DNA in 2006

• DNA Heritage (acquired by Family Tree DNA in April 2011 (deep ancestry, genealogy)

• DNAPrint Genomics (ethnicity)

• Family Builder (Internet Archive version from February 2010)[1] (deep ancestry, genealogy)

• Family Genetics (UK) (deep ancestry, genealogy)

• GeneTree (acquired by AncestryDNA) in 2012 (deep ancestry, genealogy)

• Geogene

• Relative Genetics (taken over by AncestryDNA) (deep ancestry, genealogy)

• Sorenson Molecular Genealogy Foundation (acquired by AncestryDNA in 2012) (deep ancestry, genealogy)




http://web.archive.org/web/20111228002431/http:/www.cambridgedna.com

http://www.isogg.org/wiki/DNA-Fingerprint


http://www.isogg.org/wiki/DNA_Heritage


http://www.isogg.org/wiki/DNAPrint_Genomics

http://web.archive.org/web/20100203065248/https:/dna.familybuilder.com

http://www.isogg.org/wiki/Sorenson_Genomics#GeneTree


http://www.geogene.com/

http://www.isogg.org/wiki/Relative_Genetics


http://www.isogg.org/wiki/Sorenson_Molecular_Genealogy_Foundation


Neljä suurta

• Family Tree DNA

• www.familytreedna.com • 23andMe

• www.23andme.com • Ancestry

• www.ancestry.com • National Geographic

• genographic.nationalgeographic.com


https://encrypted.google.com/url?sa=i&rct=j&q=23andme&source=images&cd=&cad=rja&docid=2u3hi0Qw9aeL8M&tbnid=TleFIIAvEEBaGM:&ved=0CAUQjRw&url=http://datascience.berkeley.edu/open-access-23andme/&ei=XawLU7DaGaXLywOi4oHoDw&bvm=bv.61725948,d.bGQ&psig=AFQjCNGkiL4v-ZSAdW_BqO3m_m78NUDU4A&ust=1393360337902385

http://www.google.fi/url?sa=i&rct=j&q=&esrc=s&frm=1&source=images&cd=&docid=pP_JusuNvOobIM&tbnid=yI5dMjKqbADKFM:&ved=0CAUQjRw&url=http://jessicajewettonline.com/ancestry-dna-yay-or-nay&ei=OLgLU5-xFMXOygPqqYGoDw&bvm=bv.61725948,d.bGE&psig=AFQjCNHKmpJ9qmuW-h55Rrnjxxa6S_y1aQ&ust=1393363382755353

http://www.sitra.fi/julkaisut/muut/Kuluttajille_suunnatut_genomitietopalvelut_ja_niiden_liiketoimintamallit.pdf

Kuluttajille suunnattujen genomitietopalvelujen businessmalleista


Promethease & SNPedia tietokanta esimerkki omatoimisesta tiedonlouhinnasta


http://snpedia.com/index.php/Rs6591536

http://www.snpedia.com/index.php/Rs1815739

• 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.

Tutkimustietoa kuluttajille suunnattujen geenitestien etiikasta (direct-to-consumer, DTC)


• 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

Eettisiä kysymyksiä


http://www.dtcgenetest.org/

http://www.isogg.org/wiki/Ethics

www.isogg.org

Kiitos!

[email protected]


2014 03-06 sloe-marja-pirttivaara-geenitestit_etiikka

Health & Medicine

Transcript of 2014 03-06 sloe-marja-pirttivaara-geenitestit_etiikka