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.
23andMe has patented the technology for making designer babies, but has stated that they don’t intend to use it. If you’re scratching your head about now, so was I. 
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.
Customer Options
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 hpa@23andme.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.
What Do You Think?
I invite your input? What do you think? How do you feel? What are you going to do?
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Hi Roberta,
Thanks for the heads up. I won’t be participating in any additional surveys and have now replied no to participating in their “research” (the privacy/consent is now on a drop down in the top right corner to the right of your name).
Vicki
Thanks for that info Vicki. I just added it to the post.
News hit Canada’s national newspaper The Globe & Mail today re 23andme , reprinted from the Wall Street Journal, entitled: Genetic Enhancement, Designer Babies: “what the future is going to look like”, by Gautam Naik.
Thank you, Roberta! I was considering testing with 23andMe. Instead I went with FamilyTree DNA.
After reading this, I am glad I did.
De Anna
Makes one think of what was happening in WW11. The supreme race?
Hi Roberta,
Thanks for this disturbing information. I just withdrew consent for the four accounts I manage and won’t be recommending their test to others from now on.
Lisa
I did too, and right after I finished that, a health survey popped up. Sigh.
Thanks for the update, Roberta. I don’t have any plans to test with 23andMe but I wonder if I should re-read the privacy statements from Family Tree DNA. I recently read a short biography of Dr. Robert Oppenheimer, the father of the atomic bomb, who spent the latter part of his life trying to put the genie back into the bottle. I see a parallel with DNA technology and the atomic bomb in that the science can be used for good or evil–or at least ethically dicey purposes.
I’m not sure how to react to the news. More transparency on the direction of their genetic research seems like a good idea. Would I have felt better if they had turned around and put the patent in the public domain (“catch and release” in fisherman speak)? What if they licensed the technology and subsidized the cost of consumer DNA tests with the licensing fees? Maybe they should have just published the technology in a respected journal? What would Oppenheimer do?
Family Tree DNA’s privacy statement says this: “Gene by Gene collects, processes, stores and shares your Personal Information in a responsible, transparent and secure environment that fosters our customers’ trust and confidence. To that end, Gene by Gene respects your privacy and will not sell or rent your Personal Information without your consent.” Here’s the link. http://www.familytreedna.com/privacy-policy.aspx They then go on to tell you under what circumstances they might ask for consent for research and how that would be done.
Thank you Roberta for sharing this. I have had test kits from 23andme for my husband and myself for about six weeks. I have not sent them in because after reading their, basically, “contract”, I thought, “h-m-m-m. I am a somewhat educated person and there are parts of this that are a little vague……” Being somewhat of a paranoiac, I have let myself think about a lot of “what ifs”. This was one of them. I basically became interested in this out of ancestry curiosity and too, I applaud medical research that could lead to cures or treatment for the torturous diseases. I have never believed in the patenting of seeds much less genes. I will not send my test kit in and I am very pleased with your courage in stepping forward to do what you can in response to this unethical practice of 23andme. Sincerely, Betsy Dutton
I love what 23andme is doing. If the technology exists, someone will be doing it. Why let the Chinese, Russians, etc. go forward while the US sticks our head in the sands. 23and me will be as ethical as the law allows, while the others probably won’t be. In addition, I think as the world grows and we lose our natural resources, the idea of having a more intelligent species with high IQ’s may be the only way out. Just think if the average person was a DaVinci or Tesla, or Einstein, wow the possibilities!!!
Your rationales are frightening……something like ” I just found a wallet with a thousand bucks in it. If someone else found it, they would spend it, therefore it might as well be me spending it.” Never mind that it never belonged to me in the first place. Also, by the way, Tesla was insane like many brilliant people are. He put Colorado Springs at risk in one of his experiments……not to mention he had himself neutered so that he wouldn’t be distracted by women. Oh yeah, we need more of this in our world.
Hmm, I’ve read several biographies of Nicola Tesla, and none mentioned that he had himself neutered. He was a very idiosynchratic personality, though, but also a very overlooked genius. He deserves much more recognition and appreciation than he’s ever been given.
I too have read biographies and he did.
I know this is off topic, but if Betty Dutton could just do one more reply, giving the title/author of the biography or biographies that talk about his neutering, I would appreciate it.
Thank you, Roberta!
When I began my research into testing for genetic genealogy, I spent hours and hours reading blogs like yours and poring over the Terms and Conditions of the vendors. 23andMe’s terms made it clear that I didn’t want to make them the custodians of my genetic material–in any way. I wasn’t comfortable with the impression that they could decide to do whatever without additional input or a chance to opt out at any time.
I’ve tested at 2 of the big three: atDNA at Ancestry but found I wanted more information so I transferred the raw results to FTDNA. I’ve tested my mtDNA and dragged my father into testing his atDNA and Y-DNA. Since I don’t have the option of testing my deceased mother, I considered–in desperation –testing at 23andMe to learn more. After reading about this latest patent, it isn’t going to happen. Their tools and their reference populations might be beneficial, but I don’t feel they are worth the risk. I will have to be content in what I can glean from harassing…er…asking, yes, that’s it asking cousins to test and using FTDNA’s chromosome browser and GEDmatch’s tools.
Yonnie
The title of the news article is over-the-top sensationalism. This isn’t the kind of technology that allows for “designer babies” by any stretch of the imagination.
But irresponsible journalism WILL scare people away from legitimate, non-controversial, benign DNA testing. The stigma will carry over to other companies, including FTDNA.
My only thought here is what happens if our Political masters desire certain traits in the general population, ridiculous i know but also probable given the general incompetence of our Politicians and their predilection for graft and corruption and their desire to remain in power.
This is an area that requires strict regulation and legislation NOW.
Wow! I always felt there would be something like this, but not in my lifetime….so I brushed my thoughts aside and denied my initial thoughts. Oops! Not the good thing to do. So I’m already there; what now?
Hi Brownie. You can go in and revoke your consent for medical testing. I updated the link to show how to do that at the bottom.
I saw this and had to share it with you. One good step in the right direction for DNA.
DNA Evidence for DAR Applications and Supplementals
October 5, 2013
There have been so many activities and developments over this past National Board of Management week – and as this is being posted I’m on the bus heading out on the week-long DAR Schools Tour – but I knew this one topic in particular would be very exciting for many of you so I had to tell you right away. I’m pleased to announce that a ruling was passed today by the National Board of Management to allow the submission of Y-DNA test results as part of a genealogical analysis of evidence under guidelines set forth by the Genealogy Department effective January 1, 2014.
So what that means is that beginning January 1, 2014, NSDAR will accept Y-DNA evidence in support of new member applications and supplemental applications. DNA evidence submitted along with other documentation will be considered along with all of the other source documentation provided to prove heritage. Y-DNA will not be considered as stand-alone proof of linage because while it can be used as a tool point to a family, it cannot be used as absolute proof for an individual.
Full Article here: http://youngblog.dar.org/dna-evidence-dar-applications-and-supplementals
This is really good news. I know Katherine Borges and others have been working diligently on this for years now.
Hi Roberta,
How would I withdraw my consent since the test is not done yet. If I would have know that I would not have tested there.
If your test isn’t done yet, you don’t have to worry about it.
Thank you.
Thanks Roberta. I’ll do the same. Had a nagging feeling that something like would happen when the price was lowered to $99. Terrible.
Roberta, this has always concerned me, not just pertaining to 23andme alone but all major company’s collecting our DNA & how it might be used in the future. Hopefully it doesn’t get in wrong hands, or perhaps already is in wrong hands?
Kind of off subject but an interesting thought – a friend of mine said the gov said once they have 20% of everyone’s DNA they will know everyone’s.
Thank you Roberta for standing up and having a say on this very important issue for genetic genealogists. This post http://blog.23andme.com/health-traits/noninvasive-sequencing-of-a-human-fetus/ in November 2012 actually gave a hint about 23andMe’s designer baby plans. 🙁
Roberta, I feel the media coverage has been greatly sensationalized. I fail to see how participating in surveys leads to designer babies. I will continue to answer the surveys on the chance that my trivial bit of data will contribute to greater understanding of serious medical conditions.
Hi Ann, The frightening aspect of all of this is that we don’t know how what we have provided in terms of either information or DNA has or will be used. 23andMe could have done a great deal to mitigate this by being up front with what was going on before it hit the media with such force. It doesn’t help that in their own blog they state that their new patent is related to one of their tools – and that tool includes eye color, which, if I recall, is one of the question they ask you about yourself. So was the eye color data gathered used to correlate actual occurrence of eye color with the prediction of eye color? And is that part of what can be selected for? Given that reference, it seems that answering even the most apparently mundane of questions may be used in a way that might not be savory to some people. This also wouldn’t be so difficult I think if they previously had a track records of many patents for tools and products to cure diseases. But they don’t. This is their second patent and the fact that they obtained it but say they don’t plan to use it simply begs the question of why they would spend the money to invest in and obtain a patent they don’t intend to use. This whole scenario just makes me extremely uncomfortable. I too want the answers to my questions and my DNA for that matter to help with understanding serious medical conditions, which is why I opted in to research in the first place, but that’s a far cry from this most recent patent which is clearly where at least some of their corporate effort and focus have been.
You can’t really “design” a baby. Geneticists in general try to calculate the *probability* that a child will inherit certain traits by comparing the genotypes of the two prospective parents. In the case of eye color, which is still not completely understood, 23andMe began with associations found in the published literature. They *might* be able to improve the accuracy of the prediction by including survey answers. They might even discover a novel association.
I recommend Blaine Bettinger’s blog post for more background.
http://www.thegeneticgenealogist.com/2013/10/07/a-new-patent-for-23andme-creates-controversy/
Who is to say that 23andMe will cease using our DNA simply because we ask them not too. Once 23andMe, or any other DNA testing organization for that matter, has our DNA, there’s very little possibility of our being certain of exactly how they will use, or misuse, that material. Sadly, very few companies may be trusted these days.
I support genetic research for the health benefit of mankind but NEVER for narcissistically exploitive avenues …… This scenario is exactly why I have so MANY family members who WILL NOT DNA test and why those of us that have, chose FTDNA …. This potentially could be black eye to all genetic genealogical testing entities …..
Thanks for the heads-up, Roberta. I too am appalled and will follow your instructions to opt out of future research. This type of technology is like opening Pandora’s box.
Mr. Tripp posted on this blog about Oppenheimer’s great regrets. He contributed mightily to opening a Pandora’s box. Glad to see you recognize this one.
To B. there was no reply button to your last message…..I hope you receive this reply. This is off topic as you said and I too hope this is the end of the Tesla controversy since this is not the place for it. My apologies to Roberta. I kind of knew this request would come and since it has been fifteen or so years since I read the two books on Tesla (I have a friend who thinks he’s the greatest thing ever), I went on line last night to see what I could find. The Tesla self castration topic is still controversial….there are a lot of references to it there. I regret bringing Tesla up. I merely wanted to make the point that there are enough “mad geniuses” already in our world to satisfy our leaps forward in technology……and to maybe get people to think about “who gets to decide what are valuable human traits?” I personally value the traits that Gandhi, the Dalai Lama and Jesus embodied.
Regarding designer babies… The point I was trying to make wasn’t the exact genius of a person (Tesla) but the magic of what genius’ minds could do. If the world upped its IQ percentage by 40-60 points it would be a better more progressive place. And I would bet that Gandhi, the DLama and Jesus’ IQ’s were quite high. One final note, I’d also like to include Steve Jobs (if we could only have a few more of him in the world!!!!) Read the credo for Apple below, a convincing reference adding to my point:
“Here’s to the crazy ones. The misfits. The rebels. The troublemakers. The round pegs in the square holes. The ones who see things differently. They’re not fond of rules. And they have no respect for the status quo. You can quote them, disagree with them, glorify or vilify them. About the only thing you can’t do is ignore them. Because they change things. They push the human race forward. And while some may see them as the crazy ones, we see genius. Because the people who are crazy enough to think they can change the world, are the ones who do.”
― Apple Inc.
I love this conversation and would LOVE to see it grow!!!
Thanks anyway. I too am sorry for the thread diversion. I just hadn’t heard that about Tesla before.
I think if we, as a world, strive for literacy and emphasize good education, it would go a long way toward making this world a better place. We don’t necessarily need to up the IQ by some selective DNA choices, but I’d bet we’d find many geniuses who just need the opportunity to be educated.
Agreed!
Hello, Roberta,
We have really enjoyed your genealogy news, and thank you for all of your research, especially concerning Native Americans!
We are horrified at the thought of 23 & Me utilizing ours and others’ DNA for “designer babies”!!! We will definitely be removing our permission to use our DNA for “research” as soon as the settings on 23 & Me become visible again! We will alert others concerning this very negative news.
Sincerely, Gail & Patrick Welch Gail De Noce Welch
Date: Sat, 5 Oct 2013 16:14:23 +0000 To: revdocpgwelch@hotmail.com
I have updated the article with how to remove permission. In essence, click on your name once you sign on and then on settings, then you’ll see consent.
The only reason I did 23andMe DNA testing earlier this year (along with my husband) was because we are older – and I was curious – and I figured less risk to us for future repercussions like this. I just didn’t see it coming so fast. I can remember telling my husband “I wouldn’t be doing this if we were younger”. And I’ve answered some of their “endless” surveys for me (but got tired of the CONSTANT surveys), but none for him.
I will say I did get some valuable health info that I had suspected on some specific gene mutations that are common to autoimmune conditions – and which has been beneficial to other family members when I told them about it.
But I this post’s information now makes me hesitant to even ask other relatives to test at FamilyFinderDNA for genealogical purposes.
It will require, no doubt, GOVERNMENT intervention! One can always HOPE for a better RESULT then NORMAL
I have honestly looked at 23andMe several times over the years, but found myself with a ‘gut’ feeling of no, so I go with my ‘gut’. I have tested mTdna with ftdna.com, FF on ftdna.com and Autosomal DNA with Ancestry.com. Once I discovered I had quite a bit of Middle Eastern/Jewish (who knew we had our own dna?), I took in the info to my MD, who got testing on the health issues of Ashkenazi Jewish heritage and I was cleared of these issues, thank goodness.
I’m sure 23andMe looks for more details, but I could not make myself sign up with them.
Now, reading the latest information from Roberta, I feel confident in my choice. I hope others will post their experiences so I can continue to be well informed in the future endeavors of 23andMe.
I don’t see it stated anywhere that 23andme are patenting genes. And to think that they are somehow “using our DNA for designer babies” doesn’t seem to make sense. It looks as if they have patented the method by which two tested individuals, or someone on their behalf, might be able to narrow down a few of the traits their child might have. This seems like a technological means of accomplishing what people do when they meet a potential romantic partner — see if the person is attractive, ie, has traits you think are desirable. Aren’t people who need sperm donors already making choices about traits they want in a donor? Am I really missing something important?
23andMe uses the information and the DNA provided by their customers to learn from. Without it, they would have nothing to study. They obviously studied something to be able to patent this new technique. It’s obvious that we don’t know how or what our DNA or information we provide via surveys was used for. I expected it to be utilized for things like studying and curing cancer, Alzheimers, etc., not how to produce a designer child that has blonde hair, blue eyes and can run fast for their soccer games.
Thanks for your reply! I don’t think the reporting shows them trying to “produce” any living thing. And they are not claiming to be able to control recombination. So anyone who tests with a partner, looking for what traits their child might have, can’t produce a child with specifically chosen traits either. I don’t really think that the test method they have patented points to a “designer child.” The phrase is an extremely loaded term that seems unwarranted.
The patent application itself is reported to include drop down boxes for specific traits. That’s the purpose, to select for those traits, or for the highest probability of obtaining those traits. The great irony is that if they had couched this in terms of de-selecting for disease traits, I think this would have been much better received, but using their resources to produce a tool to allow for something as fluffy as blue eyed, blonde haired children instead of for other types of serious medical research seems so disingenuous and shallow.
Designer babies, who’s terminology was that exactly, I wonder? If by ‘designing’ babies, they use DNA discoveries to decrease the risk of children born with Huntingdon’s (a death sentence), Sickle Cell Anemia (not much better) or Cystic Fibrosis ( a nasty childhood disease that usually significantly cuts life short), then I’m sorry but I think that is wonderful! You are saving humanity the sorrow and woes and pain and suffering of these diseases. Seriously, 1800s research has basically eradicated small pox, polio, the plague etc etc…. a little knowledge can go a LONG way..heck, if it weren’t for the ‘crazy scientific research’ of the past, MANY, MANY of us would NOT be here today. Just my two cents..I think someone jumped overboard. I for one have no problem with DNA finding cures, solveing problems and saving lives and no doubt it will, but from a medical standpoint it is still a couple of generations in the future..you and I won’t benefit but generation X’s children may.
As I said, my issue is with how they are obtaining consent and that people don’t realize that and what their DNA is being utilized for. I think people have the right to know and to opt in to each study their DNA is used for.
When I first discovered the information regarding the 23&Me patent, my inner warning system went off. The sad thing is that now I wonder about FTDNA and all the others…….especially “Engulf and Devour”. It’s my thinking that this sort of thing honestly calls for a class action of some sort utilizing a highly skilled attorney in order to stop it in its tracks and prevent further actions on the part of 23&Me and other companies.
Patents are a great idea, in theory. In practice, there is a lot of mischief going on in the US patent world. There are plenty of reasons to patent a technology whether you plan to use it or not, not the least of which is an arms race between legitimate inventors and patent trolls. (Google “patent trolls” to read what they do and how they do it. It’s pretty extreme, and yielded settlements of $11 billion in 2011.)
Patent trolls patent a tehnology, or buy an existing patent, and then extort entities for using related technologies. If a patent troll obtains a patent on a process similar to the “designer babies” patent, it could then use the patent to extort 23andMe, and perhaps even 23andMe’s customers. Alternatively, a company like Myriad Genetics could seize the same technology (as they did with their test for BRCAA) and price it so high that only the very wealthy could afford it. Admittedly, 23andMe could do the same thing, however, as you noted, 23andMe’s success depends on good relationships with its large customer base, whereas the Myriads of the world answer only to shareholders. For my part, this fact alone leads me to be supportive of any patenting 23andMe might do. Anything it patents is beyond the reach of Myriad and similarly unconstrained commercial entities.
Also admittedly, there is a legitimate ethical question whether anyone should be using genetic data to make “designer babies”. I personally don’t care; I think we have always attempted to “design” babies. Matchmakers, miscegenation laws, and the importance of appearance in mate-selection are all importantly influenced by hopes (and fears) for the way the next generation will look. It is well known that, when Prince Charles (5’10”) became engaged to Diana (also 5’10”), Queen Elizabeth (5’4″) was unenthusiastic, but she found a silver lining by noting that “at least she’ll bring some height to the line.” All that has changed is our ability to do more effectively what we’ve always tried to do with the tools at hand. However, even for those who consider it unethical to “design” babies using genetic information, the reality in our world is that once the technology is known, it will be used. It is no solution to an ethics issue to confine unethical practices to the wealthy.
I also agree with those thoughtful posters who said, “Wait. Catch your breath, now. Exactly how will what 23andMe has patented lead to “designer babies?” Like them, I came up with the answer, “It won’t.”
Maybe something will, and maybe something in the world of genetics will chillingly relate to China’s one-child policy, and Hitler’s eugenics, and who-knows-what-other-horrors — but mellow out, folks. This isn’t it.
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Let’s get real, folks… people try to “design” babies all the time. Only we do it w/o having someone’s genome in hand. Instead, we screen our mates based on their physical appearance, and where is physical appearance determined but in DNA, right?
My testing here at 23andme (as well as FTDNA and Ancestry and Nat Geo Geno2) has taught me one thing: we have a long long way to go before we, as a society, are capable of such things as designing babies (or cloning mammoths and dinosaurs, for that matter). We may have some speculative info on SNPs but, heck, we can’t even tell for sure which SNPs are definitive proof of red hair!!
For example, I have SNPs for brown eyes and brown hair — and I am a blue-eyed redhead. So, if some prospective parents wanted to “design” a brown-eyed brunette, my genome (as tested) would say I’m the one! And wouldn’t those designing parents just have a snit-fit when they discovered me, their blue-eyed redhead!
Until science can definitively PROVE my genome is absolutely 100% indicative of a blue-eyed redhead, the worries about “designer babies” are absolutely overstated.
I agree with you 100%. I’m very appreciative of you bringing this to the attentioin of your readers/followers. Thank you!
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