Friday 15 January 2021

Merger of myDNA with FamilyTreeDNA and Gene by Gene

It was announced last week that the Australian genomics company myDNA is to merge with the genetic genealogy company Family Tree DNA and its parent company Gene by Gene. Dr Lior Rauchberger, the CEO of myDNA, is to become the new CEO of the merged companies. Bennett Greenspan and Max Blankfeld, the co-founders of FTDNA, will join the new Board of Directors. Here is the text of the press release.

Pharmacogenetic and Genealogy Pioneers Merge for Historic Partnership

myDNA and FamilyTreeDNA Share a Vision for the Future of Better Living Through the Power of DNA

MELBOURNE, Australia, Jan. 7, 2021 /PRNewswire/ -- Dr. Lior Rauchberger, CEO of leading Australian genomics company, myDNA, announced a merger with the U.S., Houston-based consumer DNA test company, FamilyTreeDNA, and its parent company, Gene by Gene. Dr. Rauchberger will step into the role of CEO of the merged companies, effective immediately. Gene by Gene co-founders Bennett Greenspan and Max Blankfeld will join the Board of Directors.

FamilyTreeDNA, launched in 2000, has the distinction of being the first company in the U.S to offer direct-to-consumer DNA testing for genealogical research. myDNA, founded in 2007 by Associate Professor, Les Sheffield, started with a mission to improve countless lives by revolutionizing the field of pharmacogenomics, making truly personalized medicine a reality, before expanding into nutrigenomics to deliver actionable, personalized nutrition, fitness and skincare recommendations.

The innovative merger of myDNA and Gene by Gene is built on several shared beliefs about the tremendous potential of genetic information to dramatically improve our understanding, not only of who we are and where we come from, but by providing a scientific foundation for actionable, personalized insights, and how they can guide us in how best to care for ourselves and maintain optimal health and wellness both physically and mentally. The two businesses come together as one of the leading global experts of genealogy, pharmacogenomic and nutrigenomic services.

At myDNA, consumer privacy is paramount. myDNA believes the importance of the consumer's ability to trust in the privacy of their genetic information, and retain control over it, cannot be overstated. Along the same line, Gene by Gene and FamilyTreeDNA will continue acting in the field of Genetic Genealogy, their original business, keeping intact their privacy rules and all terms of service.

According to myDNA CEO, Dr. Lior Rauchberger, an M.D. who practiced medicine for nine years before becoming a leading expert in personalized medicine and the intersection of medicine and technology. "It's thanks to pioneering brands like Gene by Gene and FamilyTreeDNA that consumers see the value in safely and securely exchanging genetic information for personalized services. The Personalized Wellness revolution is only just beginning and we're eager to be able to offer FamilyTreeDNA and myDNA members a box seat to a wider range of services thanks to the merging of these fantastic businesses."

About myDNA -
myDNA is an Australian personalized genomics company that decodes the information in our genes to help us understand the power of our DNA and what to do with that knowledge. myDNA's tests are simple cheek-swabs that can be ordered online and carried out in the safety of your own home. Their vision is to be the world's most trusted provider of personalized, actionable, genetic information.

About Gene by Gene - |
Founded in 2000, Gene by Gene, Ltd. provides reliable genetic testing services to a wide range of consumers and institutional customers through its four divisions focusing on ancestry, health, research, and paternity. Genetic genealogy testing services are provided by FamilyTreeDNA - a division of Gene by Gene and the pioneers of the direct-to-consumer genetic genealogy industry. Gene by Gene is CAP/CLIA registered and, through its clinical health division, offers health, wellness, and regulated diagnostic testing services. The privately held company, along with its state-of-the-art Genomics Research Center, is headquartered in Houston, TX.

The following e-mail has been sent out to group administrators  ̵  the volunteers who run over 10,000 surname, geographical and haplogroup projects at FTDNA  ̵  have received the following e-mail from Bennett Greenspan, the current CEO:
Dear Group Project Administrators:

We hope this finds you and your loved ones healthy in this new year.

Like every small business in the country, the past year has given us pause. We were faced with the tremendous challenge of not only finding ways for the business to survive the pandemic, but simultaneously, making FamilyTreeDNA stronger, more resilient, and ensuring its promising future. A future full of growth not only for ourselves but for the hundreds of employees who rely on our business and the millions of customers around the world who look to us to deliver pioneering advancements in consumer genetics and genealogy.

After many months of consideration, we are delighted to report that FamilyTreeDNA and its parent company, Gene by Gene, have merged with myDNA, a leading Australia-based genomics company whose outstanding reputation, innovative vision, and pioneering genomics technology will allow the company to expand its product offerings.

Most important to us in evaluating this merger's suitability is our shared principle of DNA privacy protections and ownership. myDNA will retain the existing privacy policy and terms of service.

Our customers can expect a seamless transition as our new CEO, Dr. Lior Rauchberger, a respected physician and leader at the intersection of science and technology, takes FamilyTreeDNA and Gene by Gene into an exciting future filled with innovative life-changing advancements while continuing to invest further in FamilyTreeDNA’s genealogy products and service offerings.

Although we will miss being involved in day-to-day operations, we are excited to see the next chapter of innovation and growth as board members. As we leave our roles as executives of the company and pass the baton to Dr. Rauchberger, we send a big virtual hug to each of you and express our sincere thanks to all of our Group Project Administrators. We appreciate not only your dedication to your respective projects but your support of FamilyTreeDNA as a whole over the past two decades. Your contributions have been and will continue to be vital to the health and growth of the company. “Thank you” seems inadequate when, frankly, we would not be the company we are now without your efforts, but we say it anyway.

Thank you.

Just as I was compiling this blog post I also received the e-mail that has been sent out to FTDNA customers. I've copied the text below in case anyone has not received it.

Dear Customers,

We hope this finds you and your loved ones healthy in this new year.

We are thrilled to announce that FamilyTreeDNA and our parent company, Gene by Gene, have merged with myDNA, a leading genomics company that is revolutionizing the field of pharmacogenomics.

The innovative merger of myDNA and Gene by Gene is built on a set of shared beliefs that genetic information has a tremendous potential to give us an understanding about ourselves that we would not otherwise have. In addition to dramatically improving our awareness of who we are and from where we come, we strongly believe that genetic information can give us a scientific foundation for actionable, personalized insights that can guide us in how best to care for ourselves and maintain optimal health and wellness, both physically and mentally.

What does this mean for you?

Day-to-day, it’s business as usual, but we now have new resources and capabilities to continue driving value for you, our customers. In addition, FamilyTreeDNA will retain the existing privacy policy and Terms of Service. 

What does this mean for us?

Our head office and laboratory remain in Houston, Texas, and our dedicated team members will continue to operate as FamilyTreeDNA and Gene by Gene.

Our story continues…

Joining forces, with a company that is as passionate about genetics as we are, is what takes us into the next chapter in our story. Our new CEO, Dr. Lior Rauchberger, a respected physician and leader at the intersection of science and technology, will collaborate with our current experienced and trusted staff to help guide us into an exciting new future. A future filled with innovative, life-changing advancements in genetic genealogy, pharmacogenomics, and nutrigenomics. Stay tuned to see where our growth and innovation takes us from here.

Thank you!

We thank each of you for putting your trust in us over the last 20 years and for bringing us to where we are today. We come to work every day for you. Our developers, product owners, scientists…every one of us is driven by the desire to help build connections while also discovering more about ourselves and humankind. Our commitment to those concepts is stronger than ever during this exciting time.

Thank you.


Who are myDNA?

I had not previously heard of myDNA so I have done some research. According to their website, the company (previously known as GenesFX Health Pty Ltd) was founded in 2007 by Les Sheffield, who was Australia's first qualified clinical geneticist. His vision was "to eradicate the guesswork from prescribing medicines". This is an emerging field known as pharmacogenomics, though such tests seem to have found little practical clinical application. Since then the company have expanded into "other areas of health and wellness". They offer tests which purport to provide personalised diet and and fitness plans based on your genetics. These DNA tests cost AU $ 69 and there is then a monthly subscription of $14.95 a month after an initial free period. The company has a global membership of 85,000.

New ownership will potentially bring benefits to FTDNA with new investment leading to the development of new features and products. myDNA received $10 million of venture capital funding in 2017 so we can but hope that some of that money will be spent on developing the genetic genealogy business, improving the website and developing the IT infrastructure. An overhaul of FTDNA's Family Finder test in particular is long overdue. Most of FTDNA's sales have been by word of mouth and they have done very little in the way of marketing, especially outside the US. There is great scope for a further expansion of the Y-DNA and mtDNA databases, particularly in the international market.

MyDNA have quite a lot of scientific experts on their team who will bring in a different perspective and that can only be a good thing and might perhaps also help to bring a more scientific approach to autosomal DNA matching.

I am, however, concerned about myDNA's emphasis on DNA testing for diet and nutrition which is at the rather dubious end of the DNA testing spectrum, though I am happy to be proved wrong. MyDNA were previously involved in a scheme to offer pharmacy assistants in Australia financial inducements to sell their tests. The programme was withdrawn before it had even started so let's hope they have learnt lessons from their mistakes.

FTDNA was previously involved with Vitagene, a company which offers diet, supplement and fitness reports. These tests were offered to FTDNA's customers as a partner service, and I have always been uncomfortable with this association. Fortunately, the link to buy the Vitagene tests no longer seems to be available through FTDNA, though customers who previously ordered the reports still appear to have access.

Privacy implications

myDNA have stated that "consumer privacy is paramount" and their privacy policy says: "Your DNA sample and data remain your property, are stored on secure encrypted services, can be destroyed anytime at your request, and will never be shared without your consent". It will therefore be interesting to see if the merger will bring about a change in FTDNA's previously lax attitudes to privacy and consent. At the beginning of 2019 we learnt that FTDNA had been allowing the FBI to upload DNA profiles to the Family Finder database without the knowledge or consent of customers. As a result of FTDNA's actions, customers who did not wish to share their profiles with US law enforcement had no choice but to opt out of relative matching altogether, thus losing access to the valuable genealogy service that they had paid for. FamilyTreeDNA did eventually bow to public pressure and in March 2019 they gave customers the ability to opt out of law enforcement matching while allowing access to the regular relative-matching database.

When the law enforcement opt out was introduced, FTDNA made an exception for EU customers and they were all automatically opted out of law enforcement matching to comply with GDPR (General Data Protection Regulation), though they could choose to opt in again if they preferred. However, FTDNA does not collect postal addresses for anyone using the autosomal DNA transfer programme, so all of these kits, including EU kits, were not opted out. An e-mail was sent out to FTDNA customers, but many people will have changed e-mail addresses and will not have been notified. This means that many international and domestic customers will be sharing their profiles with US law enforcement without their knowledge and consent. For the EU customers affected this sharing is likely to be in breach of GDPR.

Going forwards, new customers can decide when they purchase a kit whether they wish to make their profiles available for law enforcement, though many people feel that the process should be more transparent.

To make matters worse, we learnt from an article in the Los Angeles Times in December last year that the FBI breaches of the FTDNA database were not involuntary as we had previously been told, but that FTDNA had actively collaborated with the FBI and that they had done the testing for the Golden State Killer case and had allowed the profile to be covertly uploaded to their database. FTDNA was treated as a confidential source by the FBI and they invoked a legal privilege to protect their sources so FTDNA was not able to disclose this information. This does of course raise all sorts of questions about the transparency and accountability of the FBI and their extra-territorial reach. It is completely unacceptable and disproportionate for the FBI to demand access to the profiles of non-US customers without consent to solve a crime in the US. This is also of particular concern given that the US is one of a minority of countries which, in a major breach of human rights, still uses the death penalty. 

Unexpectedly it transpired that many people were in fact very happy to share their profiles with law enforcement. This was perhaps not so surprising after all given the massive failings of the US justice system which has resulted in tens of thousands of prisoners and sex offenders who are missing from the national CODIS database. In addition there are backlogs of thousands of untested sexual assault kits.  As a result it is estimated that there are 250,000 unsolved cold cases in the US and over 100,000 unsolved missing person cases along with 40,000 unidentified human remains. We all want to see crimes solved and to live in a safe society, so if the US government has failed to take action then it's perhaps understandable that people want to help in any way they can. However, this needs to be done in a responsible way and with suitable ethical and regulatory oversight.

Australia has similar privacy laws to the UK and a privacy regulator in the form of the Australian Information Commissioner who appears to play a similar role as the Information Commissioner in the UK. Rather than retaining FTDNA's existing privacy policy and terms of service, I'm hoping that the merger will be the catalyst for change to comply with EU, UK and Australian privacy legislation. FTDNA's mis-steps with law enforcement have damaged consumer confidence in the company and have probably affected sales too. Of the big four companies, FTDNA have by far the smallest autosomal DNA database, despite the fact that they were the second company to launch such a test way back in February 2010. The merger is an opportunity for change. Let's hope that they take full advantage for the benefit of us all.

Further reading

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