I try very hard to stay away from politics, religion and ethical discussions. My Hoosier farmer Dad used to say opinions about those topics are like a certain body part, everyone has one and they all stink.
Today, however, I’m going to violate my own rule because willingly or not, by own DNA has been drug into this arena – without my direct knowledge – and so has yours if you have tested with 23andMe.
This Fox News article explains about 23andMe’s patent application and recent approval.
They also report that 23andMe claims they have no plan to implement this system, confirmed by a quote from 23andMe. If you’re thinking that makes no sense at all, you’re not alone. Kind of reminds me of an alcoholic purchasing alcohol but claiming they have no intention of drinking it, a pedophile purchasing kiddie porn and claiming they have no intention of viewing it, a burglar caught with burglary tools and claiming they aren’t going to use them or maybe in a less sinister vein, a cat chasing a mouse and claiming they have no intention of catching it. Yeah, right.
An article in Genetics in Medicine elaborates further. This article explains how the designer baby process takes place.
“Taken out of “patentese,” what 23andMe is claiming is a method by which prospective donors of ova and/or sperm may be selected so as to increase the likelihood of producing a human baby with characteristics desired by the prospective parents, the selection being based on a computerized comparison of the genotypic data of the egg provider with that of the sperm provider.”
Clearly, very few people would have an issue with this technology if it were utilized to only deselect mixtures which would produce children with serious genetic diseases for at-risk couples. However, utilizing this technique to produce designer children based on the whim of their parents could be another matter altogether, and to many people, crosses the murky line of what is and is not appropriate or acceptable, for whatever reason. It’s not my intention here to debate the ethics of this technology or technique. I can’t help but think, however, of the Chinese today who have a “one child policy,” only allowing one child per family which has led to sex selection in an attempt for families to assure that one child is a male. Worse yet, I’m reminded of Hitler’s horrific genocide, the Holocaust, based on, in part, physical traits.
What does 23andMe themselves have to say about this? On their May 28th 2012 blog, they announced their Parkinson’s patent. In that announcement they stated that they “have a research arm with more than 20 scientists dedicated to making meaningful discoveries that will improve the lives of all of us.”
On October 1, 2013, their blog announced their second patent, the “designer baby” patent and states the following:
“Last week, 23andMe was awarded a patent for which we applied more than five years ago, and which relates to one of the tools we offer individuals as part of their genetic exploration. The tool — Family Traits Inheritance Calculator — offers an engaging way for you and your partner to see what kind of traits your child might inherit from you. The Family Trait Inheritance Calculator has also been part of our service since 2009 and is used by our customers as a fun way to look at such things as what eye color their child might have or if their child will be able to perceive bitter taste or be lactose intolerant. The tool offers people an enjoyable way to dip their toes into genetics.”
Here’s a look at 23andMe’s Family Inheritance Calculator. The categories reported are bitter taste perception, lactose intolerance, earwax, eye color, muscle performance and alcohol flush reaction. Certainly, this looks innocuous enough.
Utilizing a screen shot from two family members, the first column displays the child’s genes, the second, one parent’s, and the final column predicts the resulting outcome of that trait in the child. In this case, the child has brown eyes, wet earwax, doesn’t run and has no alcohol flush reaction.
So if you’ve been dangling your toes in the water and thought you were just having fun, well, there might be something much more sinister under the water, depending on your perspective and your toes, well, they might just be bait.
The final paragraph in the Genetics in Medicine article sums this situation up quite well.
“What makes this case even more surprising is the fact that 23andMe is no stranger to controversy regarding its patenting activities. In the days following its May 2012 announcement on the company blog that it was to be granted a US patent for a test for propensity to develop Parkinson disease, the blog was filled with reactions of upset customers, the providers of the genetic and phenotypic data which constitutes 23andMe’s biobank. Since 23andMe is a commercial entity, clearly intended to bring profit to its investors at some stage at least, its attempts to seek patents are not surprising. Moreover, such attempts are not inherently problematic. However, for a company that invites audience participation, and so needs customers and their goodwill to maintain and expand its most valuable asset, i.e., its biobank, it is surprising that, following the uproar that greeted the announcement of its Parkinson disease patent, 23andMe has pursued this patent with no apparent public discussion. For instance, do the consumers who have also allowed 23andMe to use their genotypic data for the research conducted by the company agree with the use of their information for the purpose of developing a method for gamete donor selection? Public trust is central to the continuing success of human genetics research in general and biobank-based research in particular. We urge maximal transparency by all engaged in human genetics research.”
Customers are the Biobank
Herein lies the problem. I’m one of those consumers and I had no idea whatsoever that this research was underway. That makes it clandestine at worst and certainly not transparent at best. My DNA, along with all of their other clients who constitute their “biobank” was used for this research which has now been patented in the form of “designer baby” technology. I’m not going to say publicly whether I’m in favor of or opposed to designer babies, per se, but I’m going to say that I’m extremely uncomfortable discovering that this is what was being done with my DNA. I’m not happy – really not happy.
When I purchased my DNA test at 23andMe, it was for genealogy, although I have clearly benefitted from the health traits aspects too. I have been a willing participant in several surveys, including the ones about Parkinsons. My mother had Parkinsons, at least we think she did, as Parkinsons is a diagnosis by excluding other possible diseases. In other words, there is no test for Parkinson’s disease itself. My thoughts of course when I’ve taken these surveys about diseases, traits and such is that the research would be utilized in identifying genetic sources and then perhaps treatments or drugs to cure those diseases. I fully expected the treatments to be patented, but I did not expect the genetic aspects, or the genes themselves, to be patented.
In all fairness, I did give consent and I knew that their primary focus is and was medical research. However, I didn’t expect they would utilize my DNA for this. I trusted and had confidence in them. Now I don’t.
Consenting for What?
Here’s a link to their consent form. The first paragraph says “23andMe aims to make and support scientific discoveries and publish those discoveries in scientific journals.” Hey, I’m good with that. In fact, I applaud it. A patent is not a scientific journal article.
Looking further, under item 5, under Benefits, it says, “23andMe may develop intellectual property, including but not limited to patents, copyrights and trademarks, and/or commercialize products or services, directly or indirectly, based on the results of this study, and in such cases you will not receive any compensation.” I don’t quite understand how that is a benefit to me, at least not directly. But it does say the word, patent. It’s just that, well, I expected the patents to be related to disease cures, like cancer and Parkinsons and things like that, not designer babies. Designer babies clearly have been a priority for them, and they have been working very quietly, too quietly, on this for a long time. The patent was applied for in 2008. Discussion about their Parkinsons research is all over their website, but not a peep about their designer baby research. Why is that?
Recently, the Supreme Court struck down a similar patent on the Breast Cancer Genes. This patent is different in that it doesn’t directly patent the genes themselves, but the gamete selection technique, as best I can tell.
What can I, as a consumer, do? I’m very uncomfortable now with 23andMe and their priorities. I feel that we as consumers, their customers, have been betrayed. I feel that they have compromised their own integrity by focusing on designer babies for the wealthy who want to select eye color instead of on disease cures for the masses, which is what I expected would be done with my DNA. I’m wondering what other things they are working on that I will find equally as objectionable.
This isn’t a debate about the ethics of designer babies, but a discussion about how my, and your, DNA is being utilized.
What can I do? I still want the genealogy matching services, but I no longer want to participate in their medical research. According to the consent form, customers do have an option to withdraw. Here is what that says:
“Your alternative is not to participate in the 23andWe research study…If you choose not to give consent for 23andWe research, your Genetic & Self-Reported Information may still be used for other purposes, as described in our Privacy Statement.
At any time, you may choose to withdraw all or some of your Genetic & Self-Reported Information from 23andWe research by changing your consent status within the 23andMe “Settings” page or by sending a request to the Human Protections Administrator at email@example.com. You will still be allowed full access to the Personal Genome Service®, but 23andMe will prevent the requested information from being used in new 23andWe research occurring after 30 days from receipt of your request. Any research on your data that has been performed or published prior to this date will not be reversed, undone, or withdrawn. Your Genetic & Self-Reported Information may still be used for other purposes as described in the 23andMe Privacy Statement.
Choosing not to give consent or withdrawing from 23andWe will not affect your access to your Genetic Information or to the Personal Genome Service®.
You may also discontinue participation by closing your Personal Genome Service® account, as described in the Terms of Service. Requests for account closure must be made in writing to 23andMe’s business address or via Customer Care.”
Hmm, it says that even if I withdraw, they can still use some information. I did as they suggested, and consulted the Privacy Statement. I’m not a lawyer, but this paragraph seems to suggest that regardless, they can use at least some of my information anyway.
They state: “If you do not give your consent to participate in 23andWe Research, 23andMe may still use your Genetic and Self-Reported Information for purposes such as quality control or other R&D activities. Genetic and Self-Reported Information used for such purposes may be included in Aggregated Genetic and Self-Reported Information disclosed to third-party research partners who will not publish the information in a peer-reviewed scientific journal. Research partners may include commercial or non-profit organizations that conduct or support scientific/medical research or conduct or support the development of drugs or devices to diagnose, predict, or treat health conditions.”
So, the net-net of this seems to be that my only recourse if I really don’t want my DNA utilized is to close my account entirely – and even then, I’m not at all sure that they don’t retain my information and utilize it. Maybe Judy Russell or Blaine Bettinger could provide a better legal review.
What I’m Doing
Let me tell you what I am going to do.
1. I’m going to change my settings to prevent my DNA from being utilized in further research, and I’m not going to answer any more surveys until I feel much better about what 23andMe is doing, if ever. In fact, I was going to show you how to do this too, if you’re interested. However, after logging into 23andMe, the “settings” page is not in evidence since their last page reorganization, nor can it be found by searching, and neither is the “gear” that used to be the gateway to settings, so I will be e-mailing their Human Projects Administrator at hpa@23andMe.com. This settings page required to withdraw should be obvious.
Edit – Update – The Settings Option is a dropdown from your name after you sign into 23andMe. Then click on Privacy/Consent.
2. Furthermore, I will no longer be recommending that people test at 23andMe without a very strong caveat and a link to this posting.
3. I’ve removed their link from my blog sidebar. Poof – gone.
I’m not the only one taking action. Spencer Wells, population geneticist and Scientist in Residence at the National Geographic Society has weighed in as well on Facebook.
“Interesting how this “coincided” with the government shutdown, and therefore possible FDA regulation…it’s eugenics, plain and simple. If you believe that your genome belongs to you, and don’t want yourself patented, respond by liking this post. Let’s build a campaign. #iownmygenome“
What Do You Think?
I invite your input? What do you think? How do you feel? What are you going to do?