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Large-Scale Genetic Genealogy Privacy Concerns

thegeneticgenealogist1 I’ve been working on a presentation regarding the future of genetic genealogy, and one aspect of that future is the ability to trace DNA (SNPs, mutations, haplogroups, etc…) through recent history as the result of combining extensive genomic sequencing with massive family tree information.  Although the ability to do this will have many uses (both for genealogy and for personalized medicine), it will also raise a number of privacy issues, as a recent paper suggests.

A New Privacy Study

In “Inferential Genotyping of Y Chromosomes in Latter-Day Saints Founders and Comparison to Utah Samples in the HapMap Project,” author Jane Gitschier uses a combination of FamilySearch (http://www.familysearch.org) and Sorenson Molecular Genealogy Foundation (http://www.smgf.org/) to elucidate the Y-chromosome signature of two founders of the LDS Church.  Gitschier then used that information to determine whether anyone who contributed DNA to the HapMap project was related to these individuals via the Y-chromosome (none appeared to be).  However, Gitschier was able to predict the surname of many of the HapMap participants using these databases.

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Family Tree DNA Reaches 500,000 DNA Testing Kits

image In November 2007 I estimated that as of that date 600,000 to 700,000 DNA testing kits had been sold by genetic genealogy companies and that the number was increasing by 80,000 to 100,000 kits per year  (see “How Big is the Genetic Genealogy Market?”).  I ended that article with a prediction:  “As the interest in genetic genealogy grows, I predict that the 1 millionth genetic genealogy customer will push the ‘buy’ button as early as 2009.”

It seems my prediction might not have been too far off.  This week, Family Tree DNA issued a press release stating that the company had recently received an order for the 500,000th testing kit.

FTDNA’s Press Release:

HOUSTON, February 9, 2009 (For Immediate Release) – Family Tree DNA (http://www.familytreedna.com), the world leader in genetic genealogy, announced today that it received its 500,000th DNA test order for genealogy and anthropology purposes.

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23andMe and mondoBIOTECH Announce Partnership

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23andMe and mondoBIOTECH announced at Davos (the World Economic Forum in Switzerland) today that they will work together to further the study of rare diseases.  According to the press release (below), mondoBIOTECH will identify individuals suffering from certain rare diseases and sponsor their enrollment in the 23andMe Personal Genome Service™.  Researchers will use the information collected to learn more about the potential causes of these rare diseases.

CNBC Video:

Linda Avey appeared on CNBC this morning to discuss the company and the partnership – see “It’s All in the Genes.”

The Press Release:

Davos, Switzerland – January 28th 2009 – 23andMe, Inc., an industry leader in personal genetics, and Mondobiotech AG, a Swiss research company dedicated to the development of treatments for rare diseases, today announced at the World Economic Forum in Davos, Switzerland, that they are collaborating to advance research of rare diseases.

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Colleen Fitzpatrick’s New Website

Last September, I interviewed Colleen Fitzpatrick here at TGG.  Colleen has been very busy since then!  She has launched a new website called Identifinders, which offers a number of forensic genealogy services.

Additionally, Colleen was featured in “Does Publishing Need Genealogists?” by Publisher’s Weekly for her work in researching the circumstances surrounding two recent publishing cases: Misha Defonseca’s Misha: A Memoire of the Holocaust and Herman Rosenblat’s Angel at the Fence. From the article:

Their research uncovered baptismal and school records proving that Defonseca didn’t escape the Holocaust by running with wolves. She didn’t need to; her father was a Nazi collaborator. And if Defonseca had denied the evidence, Fitzpatrick and Sergeant were prepared to use DNA, which, along with photographs and archival records, are a forensic genealogist’s stock in trade. “I almost feel disappointed that Misha confessed,” wrote Fitzpatrick on her IdentiFinders.com Web site. “I was looking forward to identifying her through DNA.”

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The Genealogy Market 2009

GenealogyMarket I’ve long been interested in the success and long-term outlook of the genealogy market.  Although altruistic genealogists have done immense amounts of work to transcribe and put records online, one of the strongest forces behind the digitization of genealogical records has been private profit-driven organizations.  And these organizations, of course, rely on the viability of the market.

FTM Media Kit

Randy Seaver at Genea-Musings recently linked to Family Tree Magazine’s 46 page 2009 Media Kit, which contains extensive information about the genealogy market and the Family Tree Magazine audience.  The report is filled with statistics about all facets of genealogy and genealogists, and the author(s) include links to all their primary information.

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Could You be a Chief Genealogy Officer?

As announced by Mark Tucker at ThinkGenealogy and Shelly Talalay Dardashti at Tracing the Tribe, CEO of FamilyLink.com Paul Allen tweeted the following yesterday:

“Starting job description for ‘chief genealogy officer’ who will help manage GenSeek–directory of all the world’s genealogy sources.”

You can learn more about GenSeek – a comprehensive genealogy website including the Family History Catalog 2.0 – at “What is this GenSeek of which you Speak?” from ThinkGenealogy.

This is an interesting development and suggests that innovative developments in genealogy are continuing and that they can be profitable (for instance, see Geni.com’s latest round of VC).  In the past few months, FamilyLink.com, Inc. has hired a new a new president (Steve Nickle), vice president (Jim Erickson), and chief technology officer (Allan Carroll).

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Stephen Pinker, The New York Times, and Counsyl

imageAlthough I can hardly hope to introduce or discuss these recent events any better than Daniel MacArthur has already given at Genetic Future, I will at least bring this new information to your attention.

Last Wednesday the New York Times printed “My Genome, My Self”, an article written by Stephen Pinker, one of the Personal Genome Project’s “First 10.”  In the article, Pinker talks about his experience with genome sequencing through the PGP.  It is especially interesting since Pinker analyzes the issue from the point of view of a psychologist.  I highly recommend reading this article if you are at all interested in personalized medicine or genetics.

Much of the article discusses the confusing results that are returned by genome/disease analysis, due to our current lack of understanding in this enormous field:

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More X-Chromosome Charts

Last month I wrote “Unlocking the Genealogical Secrets of the X Chromosome” and posted a few charts that show the inheritance of the X-chromosome through 8 generations.  I thought these charts might be helpful since inheritance of the X-chromosome can be difficult to understand without seeing it.

New Chart with Ahnentafel Numbers

Since posting the article, two new charts have been created using the originals.  I made one, and the other was made by Rodney Jewett (who gave me permission to re-post the chart here) and posted at dna-forums.org.

Mr. Jewett added the Ahnentafel numbers of contributing X-chromosome ancestors to the chart.  Using these numbers, an individual can simply create a numbered Ahnentafel report to identify X-chromosome contributing ancestors using this chart:

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The Genea-Bloggers Weekly Genealogy Blogging Prompt #1

I don’t often post pure genealogy on this blog, but I thought I would take a break from genetic genealogy and join in on the Genea-Bloggers Weekly Genealogy Blogging Prompt, which was:  “Upload your favorite picture and talk about it on your blog. Answer the who/what/when/where/why of the subject matter and explain why it is your favorite.”

Although it is nearly impossible to pick a single favorite from my extensive photo collection, I chose the following photo as one of my favorites:

Three Generations of the Bettinger Family 2

People (L to R): Frank Bettinger (my great-grandfather), Angeline Taylor Bettinger (my great-great-great-grandmother born in 1815!), Ward Bettinger (my great-great-uncle), Melissa Albro Bettinger (my great-great-grandmother), Edgar Bettinger (my great-great-grandfather), and George Bettinger (my first cousin three times removed).  Unfortunately, I never met anyone in this photo, although I’ve heard a great deal about them.

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Humans Entered the Americas in More Than One Wave

image An international team of researchers have concluded that humans entered the Americas from Asia along at least two different paths.  By studying two rare mtDNA haplogroups found in Native Americans – D4h3 and X2a – the researchers conclude that D4h3 spread into the Americans along the Pacific coast while X2a entered through the ice-free corridor between the Laurentide and Cordilleran ice sheets.

From the Press Release:  “Six major genetic lineages account for 95 percent of Native American mtDNA and are distributed everywhere in the Americas,” said first author Ugo Perego, director of operations at SMGF. “So we chose to analyze two rare genetic groups and eliminate that ‘statistical background noise.’ In this way, we found patterns that correspond to two separate migration routes.”

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