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International Society of Genetic Genealogy

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This is an old revision of this page, as edited by RebekahThorn (talk | contribs) at 12:34, 8 July 2013 (→‎Industry regulation and standards: NPOV - I might not like it, but it is there.). The present address (URL) is a permanent link to this revision, which may differ significantly from the current revision.

International Society of
Genetic Genealogy
AbbreviationISOGG
Formation2005
PurposeTo advocate for and educate about the use of genetics as a tool for genealogical research, and promote a supportive network for genetic genealogists
HeadquartersCalifornia, USA
Membership
8,000
Director
Katherine Borges
Websitewww.isogg.org

The International Society of Genetic Genealogy (ISOGG) is a nonprofit organization of genealogists run by volunteers that was formed in 2005 to promote DNA testing for genealogy.[1][2][3] As of June 2013, it comprises over 8,000 members in 70 countries.[4] It advocates the use of genetics in genealogical research, provides educational resources for genealogists interested in DNA testing, and facilitates networking among genetic genealogists.[5]

In 2006 ISOGG co-founder and director Katherine Borges explained there was interest in testing as "people want to connect",[6] and in 2010 she estimated one million people had taken DTC genetic genealogy tests since they became available in 2000.[7]

Industry regulation and standards

In 2008 ISOGG supported the passing of the Genetic Information Nondiscrimination Act designed to prohibit the improper use of genetic information in health insurance and employment in the United States.[7][8] In July 2010 Borges represented ISOGG at an FDA public meeting on oversight of laboratory developed tests, where she spoke against FDA regulation preventing consumer access to DTC testing:[9][10]

The general view of ISOGG's members is that regulatory agencies should not stand between a consumer who wishes to collect data on their own genome, and labs that can provide that service. The genome of an individual consists fundamentally of information, and every individual in a free society has an absolute right to information about their own genome from a source of their choosing. Our membership base consists of many MDs, PhDs, and other specialists who are willing to volunteer their time to assist with the development of industry standards, good practices, and advisory panels. These concepts could be developed in collaboration with federal agencies like NIST and the FTC. And FDA's regulatory requirements for DTCs could be met with something as simple as full and adequate disclosures of the limitations of the tests by the testing companies. The result could be a happy medium to the benefit of consumers, the laboratories, the testing companies, the government and to taxpayers.[7][11]

An article published in Genetics in Medicine in March 2012 provides an overview of the diverse array of tests and practices in the emerging DTC genetic genealogy industry. In the article, the authors highlight ISOGG's potential role in developing industry best practice guidelines and consumer guidance:

Based on these data and our previous research, we believe that specific, federal regulation of the DNA ancestry testing industry is not warranted or justifiable at this time ... While no ethical or industry standards have been published, some companies in the DNA ancestry industry are accredited by the American Association of Blood Banks and the Clinical Laboratory Improvement Amendments ... We call on the International Society of Genetic Genealogy (ISOGG) to take a leadership role in (i) articulating an ethical code to guide the practices of the industry it advocates and (ii) developing a consumer guide to provide prospective consumers of the DNA ancestry testing industry with a reliable means to compare products and companies for their varying consumer motivations and interests. Moreover, we reiterate the need for a roundtable discussion (as recommended by the American Society of Human Genetics white paper) to better engage the many parties with diverse needs for and interests in DNA ancestry inference and testing. Such a roundtable will be successful in developing best practice guidelines for DNA ancestry testing only if all parties approach the project in good faith.[12]

The increasing affordability and popularity of DTC genetic genealogy testing has also raised ethical concerns about genealogists testing the DNA of others without consent. In a 2007 New York Times article, one ISOGG member described herself staking out a fast food restaurant to obtain a DNA sample from a relative and stated, "I was going to take his coffee cup out of the garbage can, I was willing to do whatever it took." The same article quotes Borges as saying, "People who realize the potential of DNA will go to great lengths to get it."[13]

ISOGG members perform peer reviews of surname DNA project websites of other members on request, following which the website may display the ISOGG Peer Reviewed graphic.[14]

Y chromosome phylogenetic tree

See also: Conversion table for Y chromosome haplogroups and Human Y-chromosome DNA haplogroup

Since 2006 ISOGG has hosted the regularly updated online ISOGG Y-chromosome phylogenetic tree,[5][15] although it does not endorse it for any specific utility.[16] The tree has elsewhere been described as using the accepted nomenclature for human Y-chromosome DNA haplogroups and subclades in that it follows the Y Chromosome Consortium nomenclature as described in Karafet et al. 2008.[17][18]

Y-STR nomenclature

See also: List of Y-STR markers

ISOGG promotes the adoption of voluntary industry Y-STR nomenclature standards developed by NIST and published in the Journal of Genetic Genealogy in 2008.[7][19] Borges explains ISOGG's rationale as follows:

As DNA testing for genetic genealogy purposes has become common and more people put their DNA profiles into online ancestry databases, the need for a universal format became apparent. This is a big benefit to consumers. They will definitely find more matches because of this new standard. Currently, consumers are often unaware they have to convert their results for use on different databases or are intimidated enough by the process that they don’t check a variety of databases. Also, some errors find their way into conversion tools. All these problems reduce chances of finding matches.[20]

References

  1. ^ "The International Society of Genetic Genealogy". ISOGG. Retrieved July 1, 2013.
  2. ^ "Timeline:Genetic genealogy 2005 – ISOGG Wiki". ISOGG. Retrieved July 1, 2013.
  3. ^ Kennett, Debbie (2009). "A practical guide to DNA testing". Family History Monthly (174): 22–25. Retrieved July 2, 2013. {{cite journal}}: Unknown parameter |month= ignored (help)
  4. ^ "Family History and DNA". Southern California Genealogical Society. Retrieved July 7, 2013. ISOGG has grown to over 8,000 members in 70 countries.
  5. ^ a b King, TE (2009). "What's in a name? Y chromosomes, surnames and the genetic genealogy revolution". Trends in Genetics. 25 (8): 351–360. doi:10.1016/j.tig.2009.06.003. The International Society of Genetic Genealogy (www.isogg.org) advocates the use of genetics as a tool for genealogical research, and provides a support network for genetic genealogists. It hosts the ISOGG Y-haplogroup tree, which has the virtue of being regularly updated. {{cite journal}}: Unknown parameter |coauthors= ignored (|author= suggested) (help)
  6. ^ Harmon, Amy (June 11, 2006). "Who's Your Great-Great-Great-Great-Granddaddy?". The New York Times. Retrieved July 7, 2013.
  7. ^ a b c d Smolenyak, Megan (July 20, 2010). "Don't 'Protect' Us From Our Own Genetic Information". The Huffington Post. Retrieved July 7, 2013.
  8. ^ "From the Director". ISOGG Newsletter. 1 (1). March 1, 2008. Retrieved July 7, 2013.{{cite journal}}: CS1 maint: date and year (link)
  9. ^ "FDA/CDRH Public Meeting: Oversight of Laboratory Developed Tests (LDTs), Date July 19–20, 2010". FDA. Retrieved July 7, 2013.
  10. ^ Vorhaus, Dan. "The Conversation Continues: Recap from Day Two of FDA's Regulatory Meeting". Genomics Law Report. Retrieved July 8, 2013. DTC genetic testing also had its advocates, including 23andMe co-founder Anne Wojcicki and Katherine Borges, Director of the International Society of Genetic Genealogy (ISOGG), who delivered one of the most impassioned arguments for prioritizing individual access over FDA regulation. Borges sounded a familiar refrain in arguing that the FDA should not restrict consumer access to genetic information 'without credible, compelling scientific data to support' such regulation.
  11. ^ "Public Meeting on Oversight of Laboratory Developed Tests, Tuesday, July 20, 2010" (PDF). FDA. Retrieved July 7, 2013.
  12. ^ Wagner, Jennifer K. (March 1, 2012). "Tilting at windmills no longer: a data-driven discussion of DTC DNA ancestry tests" (PDF). Genetics in Medicine. 14 (6): 586–593. doi:10.1038/gim.2011.77. PMID 22382803. Retrieved July 2, 2013. {{cite journal}}: Unknown parameter |coauthors= ignored (|author= suggested) (help)
  13. ^ Harmon, Amy (April 2, 2007). "Stalking Strangers' DNA to Fill in the Family Tree". The New York Times. Retrieved July 7, 2013.
  14. ^ "ISOGG Member Peer Review". ISOGG. Retrieved July 8, 2013.
  15. ^ "ISOGG 2006 Y-DNA Haplogroup Tree". ISOGG. Retrieved July 8, 2013. An ISOGG group was formed in November 2005 to create a web-based document which could be updated to keep pace with the rapid developments in the field.
  16. ^ "ISOGG Y-DNA Haplogroup Tree 2013". ISOGG. Retrieved July 6, 2013. This Y-DNA Haplogroup Tree is for informational purposes only, and does not represent an endorsement by ISOGG.
  17. ^ Van Holst Pellekaan, Sheila (2013). "Genetic evidence for the colonization of Australia". Quaternary International. 285: 44. doi:10.1016/j.quaint.2011.04.014. Classification of the mtDNA lineages is historic, following the naming of Native American haplogroups A, B, C and D (Torroni et al., 2006). This initiated a generally accepted nomenclature, whereby African lineages were called L and one of these, L3, apparently gave rise to some African and all non-African mt haplotypes (matrilines) that cluster under the 'superfamilies' or macrohaplogroups called 'M' and 'N'. There are now non-African mtDNA haplogroups named after all the other letters of the alphabet (except L) that are subdivisions of the large M and N superfamilies (van Oven and Kayser, 2010). The accepted system of naming sub-groups was set out by Richards et al. (1998) and more recently reviewed by Torroni et al. (2006). Y-chromosome studies have also resulted in an accepted nomenclature (see Karafet et al., 2008; ISOGG, 2010).
  18. ^ Athey, Whit (2008). "Editor's Corner: A New Y-Chromosome Phylogenetic Tree" (PDF). Journal of Genetic Genealogy. 4 (1): i–ii. Retrieved July 8, 2013. ISOGG is committed to a tree with the minimum of confusion for users, so naturally, with the publication of the new tree in Karafet (2008), ISOGG will be changing several haplogroup names to conform to the choices made by Karafet.
  19. ^ "Addressing Y-Chromosome Short Tandem Repeat Allele Nomenclature" (PDF). Journal of Genetic Genealogy. 4 (2): 125–148. 2008. Retrieved July 8, 2013. {{cite journal}}: Unknown parameter |coauthors= ignored (|author= suggested) (help)
  20. ^ "Sorenson Molecular Genealogy Foundation is First to Adopt Genetic Genealogy's New Industry Standard for Reporting Y-DNA Profiles" (Press release). Business Wire. August 17, 2009. Retrieved July 8, 2013.
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