Video: Watch the award speech now.
Laudator: Thilo Weichert
The BigBrotherAward 2018 in the “Biotechnology” Category goes to
The company Ancestry.com and its subsidiary in Munich
for exploiting an interest in genealogy to entice people into submitting saliva samples.
Research into one’s family ancestry, also known as genealogy, is a relatively harmless pastime: Who am I? Where do I come from? To whom am I related? These questions used to be answered by looking at birth certificates, wedding and death certificates, familiy trees and church registers. But genetics offers whole new insight opportunities, because an analysis of our genes, our DNA, tells us to whom we are related biologically – down to the third or fourth degree. With a certain probability even the so-called biogeographical roots of our ancestors can be determined: the question in which geographical region family members of past generations have lived.
DNA is the abbreviation of deoxyribonucleic acid, the scientific name for our genome, the totality of our hereditary disposition. Knowledge gained from that can be baffling. It is therefore no wonder that many family-tree researchers submit their saliva sample for analysis, to find out more about themselves.
Genealogy is a widespread hobby in the United States, for which many companies offer services. Ancestry.com is the market leader, allegedly with more than 10 million customers globally und 20 billion data records and documents, followed by the Google company “23andMe” with 5 million DNA analyses.
Ancestry has created a subsidiary in Munich and started a massive push onto the German market just before Christmas 2018. They promise a “journey of discovery”, “astonishing facts about yourself”, a “key to the past”. All of that for an introductory offer of only €79, meanwhile raised to €89, including taxes, excluding shipping. A real bargain, after all, the first decoding of all 3 billion base pairs of the human genome in 2003 cost 3 billion Euros in the framework of the Human Genome Project. In 2008 costs per genome plummeted to one million Euros. By 2011 a Next-Generation sequencing could be obtained for a mere 10,000 Euros. A year after that the 1,000-Euro genome analysis could be performed within a few hours, using the computing power and new analysis technologies that had become available.
The offer is not only “cheap”, but also easy to obtain: I can open an Ancestry account online and use that to order a test kit. My saliva sample is sent to a laboratory, and after six to eight weeks I can download the results from my online account. Great!
In 2018 the ancestry.com website listed several German-language “partners” who allegedly vouched for the company’s proper conduct, including several state archives, the German National Library, the German Emigration Center (“Auswandererhaus”), the Navy Academy at Mürwik, the Swiss Federal Archive or the Lower Saxony Society of Family History (“Niedersächsischer Landesverein für Familienkunde”). However, when we asked these institutions about their partnership, they didn’t know anything about it. Subsequently, this illegal advertising quickly disappeared.
The website claims that the offer was “compliant with data protection”. (Quote:) “Security and data protection are of the highest priority at Ancestry”. The customers would maintain (quote) “ownership of their data”. Data and tissue samples would be deleted or destroyed, respectively, on request. No forwarding to third parties would take place, except (quote) “as required by law” or “when you have given us explicit permission”. So everything’s fine, then?
The catch, as often, can be found in the small print, and in the case of Ancestry it is hidden in a thicket of legal provisions: a 16-page data protection statement, eleven pages of terms of service, and seven and a half pages of agreement to a research project, the “Ancestry Human Diversity Project”.
By sending in the saliva, agreement is given to the data protection statement, which grants Ancestry unrestricted research rights to my data concerning (quote) “attributes, personal health and personal well-being”. By agreeing to the “Ancestry Human Diversity Project”, “collaborating partners” become part of the game. Those partners are located (quote) “in the United States and other countries”. They can be “academic institutions, non-profit organisations, commercial enterprises and government agencies”.
Whoever has given permission to this “Ancestry Human Diversity Project”, gives up control over their genetic data and no longer has any influence over who performs what kind of research on it. According to press reports, about 80% of participants released their DNA sent to 23andMe for “research purposes” and also provided additional information about themselves and their families. Figures are probably similar for Ancestry.
But there’s more. Customers, being the “owners of their data” are being denied any information by Ancestry about the so-called research, about methods, partners or conclusions drawn from it. The reasons behind this become obvious when taking a close look at the up-and-coming industry of gene-data leeches. For example, 23andMe, a competitor to Ancestry with only half as big a data repository, recently finalised a 300-million-dollar cooperation agreement with pharma company GlaxoSmithKline for use of the data. These companies’ business models are not genealogy, instead they are all about making big money from gene data, especially with the pharmaceutical industry as the customer.
The whole thing is not a win-win scheme, with customers paying for a service they ordered. Indeed, it is rather a rip-off. This racket brings to mind Google, Facebook and Internet data. The affected persons do not receive any information about the use of their data beyond meagre evaluation results, let alone a share of the profits as the supposed “owners” of the data. On the contrary: they are even barred by Ancestry from sharing the results of the analysis with third parties.
What other kinds of greed Ancestry’s data may evoke came to light in the US in 2018: people who had had their DNA analysed found themselves and their families in the focus of the police, for example for being remotely related to the so-called “Golden State Killer”. To find this criminal, all relatives were subjected to investigations. At Ancestry, not a word could be found about potential criminal investigations of biological relatives.
Ancestry does not provide human-genetic counselling to German customers prior to the DNA analysis, as is required by the German Genetic Diagnostics Act (Gendiagnostikgesetz). The company also does not check whether a person is legally entitled to have the submitted saliva sample analysed. Consequently, a father might submit DNA samples from himself and his children, to effectively obtain a paternity test. Ancestry neither advises its customers that such actions are punishable according to German law, nor does it inform that biological relatives have a “right not to know”, or warn about the grave family disruptions and psychological consequences this may cause if, for example, a DNA test shows that a child was born out of wedlock, or if a supposedly anonymous sperm donor is suddenly exposed.
There is nothing wrong with genetic analysis itself: this can prove an important source of information for genealogy, and especially for medicine. But donors of samples should be aware of what they are doing. Providers such as Ancestry abuse the interest in genealogy to pile up a treasure trove of genome data for commercial research, because that is their actual business model. Data protection rights of donors and their relatives have to be respected. German obligations for disclosure and data protection are being wilfully ignored by Ancestry for increased profits. We observe a trend here: after the exploitation of Internet data, the exploitation of gene data will be the Next Very Big Thing. Ancestry is the top dog, and it has no scruples concerning data protection or basic human rights.
As a consequence, Ancestry receives the BigBrotherAward 2019. Congratulations.