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2014 03-06 sloe-marja-pirttivaara-geenitestit_etiikka

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Information about 2014 03-06 sloe-marja-pirttivaara-geenitestit_etiikka
Health & Medicine
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Published on March 7, 2014

Author: MarPir

Source: slideshare.net

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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 Marja Pirttivaara 2014-03-06

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) • 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) http://www.isogg.org/wiki/List_of_DNA_testing_companies Marja Pirttivaara 2014-03-06

Kuluttajille suunnattuja DNA-testejä tarjoavia yrityksiä 2/4 • 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.isogg.org/wiki/List_of_DNA_testing_companies Marja Pirttivaara 2014-03-06

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) • 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

Kuluttajille suunnattuja DNA-testejä tarjoavia yrityksiä 4/4 • 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://www.isogg.org/wiki/List_of_DNA_testing_companies Marja Pirttivaara 2014-03-06

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

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

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

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

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

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

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