As I mentioned in my last post, this year I'm going to write about the process of having my DNA analysed by 23andMe. Prior to November 2013 23andMe provided clients with nearly 200 reports connecting clients' genetics to various health conditions such as disease risk, inherited conditions, drug response and traits. They also provided ancestral information and an online community to connect with distant relatives if you so choose. In November, the FDA ordered that 23andMe stop revealing to customers their odds of contracting diseases in reports without clinical evidence to support such conclusions. The FDA was afraid that patients would take results as diagnoses. 23andMe continue to provide raw, uninterpreted data on your medical details (that you make get analysed elsewhere) and a full ancestral service.
There are a few things about the service that make me feel uncomfortable but I think I'm going ahead with it anyway. Why do I feel uncomfortable? Well, for starters 23andMe's CEO is Anne Wojcicki, the ex-wife of Sergey Brin who, when he help fund 23andMe was running Google. I don't want to get into conspiracy theory territory but it makes me feel cautious. 23AndMe promise privacy but my DNA will become part of a “Big Data” set that will be used by pharmaceutical researchers. In the best possible case scenario this Big Data will help cure or treat diseases that emanate from genetic mutations. In the worst case scenario my most personal data will be in the hands of a large corporation who wants to monetise it. New ways of using my data may develop that I can't even dream of yet. However they promise not to give my data to a third party without my consent. Then again they don't promise to get my permission before they sell the company.
A summary of the privacy statement says:
“23andMe respects your privacy. 23andMe does not sell, lease, or rent your individual-level Personal Information without explicit consent.
We are committed to providing a secure, user-controlled environment for our Services...
We may disclose to third parties, and/or use in our Services, “Aggregated Genetic and Self-Reported Information”, which is Genetic and Self-Reported Information that has been stripped of Registration Information and combined with data from a number of other users sufficient to minimize the possibility of exposing individual-level information while still providing scientific evidence. If you have given consent for your Genetic and Self-Reported Information to be used in 23andWe Research as described in the applicable Consent Document, we may include such information in Aggregated Genetic and Self-Reported Information intended to be published in peer-reviewed scientific journals. If you do not give consent for your Genetic and Self-Reported Information to be used in 23andWe Research, we may still use your Genetic and/or Self-Reported Information for R&D purposes as described above, which may include disclosure of Aggregated Genetic and Self-Reported Information to third-party non-profit and/or commercial research partners who will not publish that information in a peer-reviewed scientific journal.
We will never release your individual-level Genetic and/or Self-Reported Information to a third party without asking for and receiving your explicit consent to do so, unless required by law.”
Some of you may remember a book by Rebecca Skloot, published in 2010, called The Immortal Life of Henrietta Lacks (or even the earlier ,1998, one-hour BBC documentary The Way of All Flesh directed by Adam Curtis). It outlines the story of Henrietta Lacks, an African-American woman whose cells (taken without her knowledge in 1951 from her cancerous tumor) were cultured by George Otto Gey to create the first known human immortal cell line for medical research. This is now known as the HeLa cell line. She was a poor black tobacco farmer yet her cells became one of the most important tools in medicine, vital for developing the polio vaccine, cloning, gene mapping, in vitro fertilization, and more. Henrietta’s cells have been bought and sold by the billions, yet she remained virtually unknown until the publication of Skloot's book and her family couldn’t even afford health insurance. Stories like Henrietta Lacks', albeit 65 years old, are ones that companies like 23andMe (and clients like myself) need to bear in mind when dealing with such personal, biological data.
Because this research is part of my PhD, although it is self-research, I needed to apply for ethics approval. While I wait for approval and ponder all these issues I was given the opportunity to have a free DNA test by the Genographic Project. This project is far less problematic in that it is run by a team of researchers who want to map human origins and migration paths. They put part of their income from sales of DNA kits towards the Genographic Legacy Fund, which works to “conserve and revitalize indigenous cultures around the world”. Last night I attended an evening put on by the Royal Society of New Zealand, listened to members of the team and some local participants talk about the project and the Africa to Aotearoa project, then had my DNA sample taken by a cheek swab. I'll get access to my analysed data in about 6 weeks. I'm curious to see how their data compares to the family history stories collected by my father, although of course the DNA will tell a much older story (50-60,000 years back) than the 500 years of family tree my father has traced. I also am curious to find out how much Neanderthal I have in me!