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Ethical Dilemma: 23andMe’s Patent and Genetic Selection

23andme

Image: John Murphy via Flickr

A few weeks ago, I admitted that I didn’t trust the company that made 23andMe due to the terms and conditions attached to their product.  It was a gut decision that I revisited this week when I read about the patent they applied for that they insist they have no plans to use.  Right… because often companies go through lengthy, expensive legal processes for intellectual property they have no desire to put into use.  They write on their site:

At the time 23andMe filed the patent, there was consideration that the technology could have potential applications for fertility clinics so language specific to the fertility treatment process was included in the patent. But much has evolved in that time, including 23andMe’s strategic focus. The company never pursued the concepts discussed in the patent beyond our Family Traits Inheritance Calculator, nor do we have any plans to do so.

I would totally believe them, that they have no plans to use the patent in the way they say they will use the patent, if they didn’t complete the patent process.  But according to the USPTO, a patent is granted after many steps have been completed, including the final step: a payment of the issue fee and publication fee.

  • Step 11, USPTO – If objections and rejection of the examiner are overcome, USPTO sends Notice of Allowance and Fee(s) due
  • Step 12, Applicant – Applicant pays the issue fee and the publication fee
    • USPTO Grants Patent

In other words, at the end of this long, expensive process, they just invested more money into something they have no intention of using as an asset to make money as a company beyond its current use?  Doesn’t ring true to me.

I actually would have been fine with 23andMe if they had been honest, saying that they have every intention of having fertility clinics use the technology to screen donors.  Then my post would be focusing on the fertility clinics and not the company itself.  But, sorry 23andMe, you now get the ethical weight on YOUR shoulders.

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The patent in question, being debated across a multitude of sites and making the sensitive people of the world crawl into the comment section to write about how all people who use fertility treatments want “designer babies,” gives potential parents (or in this case, donors) information on which physical traits or medical conditions they may pass along to a child.

What the hell do people mean when they throw out the term “designer baby”?  Designer clothing is called as such because it carries the name of a designer.  Who is the designer in the case of the designer baby since there is no person on earth who can fashion a human being from scratch?  And why is it said with such contempt?  A friend used PGD to ensure that her child wasn’t passed a fatal illness; how does that create an uber-baby, somehow different from all other babies who are born without said disease?

I guess I’m not really sure how being able to create more favourable odds for a certain trait to make an appearance or to keep a disease from being passed along to the next generation in a family makes a child “designer.”  I guess I’d like Lydia O’Connor from Huffington Post to explain exactly what she means by a “designer” baby since it isn’t clear from her article, yet she uses it for her opening: “We may be one step closer to designer babies.”

So, Ms. O’Connor, care to explain?

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As 23andMe points out, genetic selection is something that one can do on a small scale simply by using their eyes.  Two tall parents are likely going to produce a tall child.  It’s not a guarantee, but it’s likely.

So we come to our first ethical question: (1) is it okay for a tall woman to purposefully marry a tall man (sorry, a lot of these questions are going to be hetero-focused since we’re talking about unassisted conception) because she wants tall children?

Then we have to take the question a step further: (2) is it okay for a tall woman to purposefully use the sperm of a tall man in creating a donor-assisted child because she wants tall children?

Then we go further still: (3) is it okay for a reproductive endocrinologist to test embryos before transferring them, only putting in ones that have strong potential for height?

Set aside potential height (remember: not guaranteed height) for a moment.  Some people choose their perspective partner because of their family medical history or reject a person due to their family medical history.  While I think we’d like to believe that love conquers all, we also know that many people engage in genetic testing prior to or after marriage, even before they hit the genetic testing that takes place during a pregnancy.  So (4) is that ethical — choosing a partner because they don’t have a history of a genetic illness that runs in your family?

And taking that a step further: (5) is it okay for a couple to use a donor to possibly skirt the passing on of a genetic condition?

And then going further still: (6) is it okay for a reproductive endocrinologist to test embryos before transferring them, and only putting in ones that do not have the increased risk for a genetic illness?

Generally when we talk about this, people say that it’s totally fine to do it in the second case because it’s a matter of life-or-death, imagining the disease at hand to be deadly, such as Tay-Sachs.

But what about something else that has strong genetic ties but isn’t fatal?  Such as an increased cancer risk, when the cancer itself is treatable?  Or mental illnesss?  No one wants their child to suffer, especially if there are ways to circumvent the possibility.  But there’s a reason why this question is such great fodder for ethics classes.  There is no easy answer on where to draw the line.

It’s okay to have a different standard for genetic traits such as height as opposed to life-threatening illnesses, but what we do need to do is define why.  Why are we okay doing everything in our power to avoid an increased risk of cancer, but not doing everything in our power to help the odds of a child being a certain physical trait?  Especially when parents are not asking for the same physical trait; the desired trait is personal to the parent; vs. being imposed by a governmental plan.

Thoughtful family building usually isn’t a crap shoot.  We’ve subconsciously or consciously chosen a partner we believe will be good to procreate with, both for nature as well as nurture.  When we imagine a future child, we super-impose the traits we believe they may inherit, including the ones we’re fearful of them receiving.  So it’s interesting to see the strong reaction and the screams of “designer baby” when we take it a single step further and actually do testing to have stronger proof of the chances.

And I do think that feelings about fertility treatments — especially who the general public believes engages in assisted conception — comes into play in the larger discussion of 23andMe’s patent.

It’s an interesting topic to debate in a mindful manner. (Yes, that was a hint!)

So where are boundaries for you on the ethical questions above
?

14 comments

1 mrs spock { 10.08.13 at 8:47 am }

I have a strong, strong family history of severe mental illness. That bullet dodged me, but I know my children are at increased risk. It’s not a 100% genetic trait, but yes, I did pre-screen any male applicants to be my breeding partner. As in, when I chose my husband, he was the least impulsive, most steady, staid person I have ever met, and came from a long line of similar people. And anyone with a tinge of mental health issues did not make the cut. If we marry with the intent of breeding with said marriage partner, we all do a bit of genetic screening, no? Otherwise we would just be going to the bar and bringing home whoever come ovulation time.

2 Blaine Bettinger { 10.08.13 at 9:14 am }

Nice post, it’s great to see someone actually thinking about and analyzing this issue rather than just accepting all the media hype. I blogged about this too (http://www.thegeneticgenealogist.com/2013/10/07/a-new-patent-for-23andme-creates-controversy/), and had some of the same questions and conclusions.

For what it’s worth, the method the 23andMe patent describes is really no different than using height, weight, education, or other traits of potential donors to pick out someone’s sperm or egg.

3 Andrew { 10.08.13 at 11:54 am }

I’ve noticed that a good deal of this story depends on the patent. Here is a discussion of 23andMe’s patent with links to the patent documents: http://inventingpatents.com/23andme-patent-gamete-donor-selection/
The interesting point here is that 23andMe’s patent DOES claim systems for “designing” babies based on genetic information. But, the company promises not to do this. My question is whether they will sell or license the patent to someone else who will pursue the designer baby technology.

4 Another Dreamer { 10.08.13 at 12:28 pm }

I think it’s a gray area, and you’re right it needs defining… but by who? I wouldn’t want the government or an uninvolved party making the decision for me, but I also wouldn’t be okay myself with people selecting embryos solely on physical appearances. We can select partners yes, we can select donors, but once those embryos are created they’re there. I completely understand wanting to avoid terminal or debilitating illnesses being passed on though.

A and I both have medical issues. My mother was warned that I would have quite a few because of medications and x-rays performed because they didn’t know she was pregnant at the time. She was scheduled for a hysterectomy when she found out about me. The doctor gave her the option to abort given the circumstances, and she chose life. Yes, they had a serious discussion about it and weighed all the pros-cons. I believe in her right to choose, but I am also so glad she chose to have me. I know it’s not the same as having genetic testing done on an embryo, but I didn’t have all the issues the doctor said were possible, and while I have issues I am happy today.

When we chose to have our own child, we made the choice to potentially pass on A’s medical issue. He has severe psoriasis, it covers about 60-70% of his body. It causes him pain, spreads more every year, and one day it may spread to his joints in the form of psoriatic arthritis (which can be disabling). It’s hereditary, he got it from his father. There’s a good chance that V will inherit this too. I don’t regret having V though, I can’t imagine not having him. His condition, while embarrassing (A gets very self conscious) and painful, is not life threatening.

5 It Is What It Is { 10.08.13 at 1:01 pm }

I have many thoughts on this (1) as a recurrent miscarrier who is also an adoptee with no medical history on my birth parents who is married to an adoptee with no medical history on his birth parents who finally used PGD to rule out possible genetic issues for miscarrying and (2) as someone who used donated embryos (already created by another couple who picked both and egg and sperm donor for their own reasons and (3) as someone who has participated in 23andmes program and (4) as someone whose own mother has accused her of ‘designing’ a baby.

Frankly, because, as a species, we already participate in natural selection because of our predisposition to picking a suitable mate based on X, Y or Z characteristics and because, in many cases, biology selects out genetically abnormal pregnancies, I don’t get what all the hype is when we are talking about screening gametes that will potentially produce a healthy human. If I have blue eyes and want my child to have blue eyes then I am going to marry someone with blue eyes but that does not guarantee a blue eyed baby, it just increases the odds.

Neither of the gamete donors that created my son had red hair and both were described as olive complected, however Baby G has red hair and fair skin. I’m not sure because of the complexities of the human genome that we can ever screen with 100% surety and make guarantees. And, while maybe we will get there with physical characteristics (height, skin, hair color, eye color) we already know that umpteen environmental influences will shape the health of the person and how they are raised will influence their predilections.

So, what, is the concern that the masses will engage in this expensive scientific endeavor to create a superior species that will then, do what?

We are such a diverse world, a diverse country that even if traits could be screened for, what I might screen for is going to vary from what the next person would so wouldn’t it all balance out anyway, as it does when we pick a mate and procreate ‘naturally’?

6 Karen (formerly Serenity) { 10.08.13 at 1:01 pm }

The question I keep asking myself is this: why do we care if people want to make ‘designer babies?’

If someone wants to go through the physical discomfort of IVF to make a tall, male, blue eyed baby, why would it matter to me? It’s like making the decision to be one and done or having 15 kids or even no kids at all, just at a different level.

I think my issue is bigger than a patent that might bring us “one step closer to designer babies” – that there is a term or that people even care about how people build their famil

7 Karen (formerly Serenity) { 10.08.13 at 1:04 pm }

Crap my phone published before I finished my sentence. What I was saying before iPhone messed up was that I don’t understand is why people care about the choices people make to build their families at all. It is a personal choice, in my opinion.

8 Alexicographer { 10.08.13 at 2:58 pm }

I agree with the critique concerning the phrase “designer babies,” and I don’t think we need to be running around imagining the world (or traditional off brand babies) is (are) going to overtaken by “designer babies”). But at the same time, I personally am not comfortable just saying, “It’s all good!”

No one’s yet mentioned sex — not the act that some people might use to create babies (so I’m told, no personal experience using that approach to baby-making), but the attribute. Choosing to transfer only embryos with XX chromosomes because one carries hemophilia I personally might be OK with. Choosing to transfer only XX embryos (only) because one hopes for a daughter, not so much. Choosing to have another child because one has 4 sons and hopes for a daughter, no problem. Choosing to terminate a pregnancy because the developing baby is female, not so good with that (yet I wouldn’t outlaw it).

So, while I agree there are big, big grey areas, and lots of selection going on among those not using medical assistance to conceive their children (no, we can’t choose on sex without medical help — but we sure can choose on race), I do think there are some lines it seems unethical to cross.

9 ANDMom { 10.08.13 at 4:15 pm }

I have a lot of thoughts on this, but the one that’s coming to the forefront right now is an answer to Karen’s “why do we care?”.

Part of why I care is because on a societal level – do we really want to live in such a superficial society that choosing a child based on potential height/eye color/hair color/sex is acceptable? In our society where we’re fighting for gay rights equal rights for women and disability rights and trying to give everyone equal opportunities – do we want it to be ok to screen out embryos on superficial traits? Because no … I don’t.

And beyond that … I don’t want those people raising kids that MY kids have to grow up with. I don’t want them to inherit a world where they’re judged on LOOKS more than they already ARE. No, it’s probably not going to go mainstream, but it’s another step down that road where looks matter more than intelligence, kindness, determination, etc, and I don’t like it.

The ethical line for me is where it affects the quality of life for the potential child. Screen out for debilitating and lethal diseases – yes. For hair and eye color – no. Even the disease one has me ehh, because people with those diseases still have worth, but I can get behind the “not wanting them to suffer” enough to support it.

10 Pepper { 10.08.13 at 4:57 pm }

I don’t really care what other people do and I know that we all have different priorities when it comes to what we do and do not want to pass on to our child, as well as the strength of our convictions on said traits. An overly-simple example is that I am an epic worrier, always have been. I would LOVE for my daughter to be more go-with-the-flow, relaxed and easy going. I’m not concerned enough to alter anything genetically to get that outcome. However, if I had a severe and debilitating anxiety disorder at the root of the worrying, I may be more inclined to attempt something to rid her of that likelihood. Don’t know for sure.

My issue is that I feel sure companies, unethical doctors, etc, will use this technology to prey on the desperate and the hopeful. And I have been (and still am, who am I kidding?) among the desperate and the hopeful and that is the part that hurts my heart and really, really enrages me.

11 Jo { 10.08.13 at 5:26 pm }

I’m of the ” go ahead and do it” camp – mostly bc of my history. I think RPL changes your views on a lot of things. If I could screen for a healthy embryo AND minimize my chances for loss, why should I deny that to a couple who doesn’t want to pass on other traits? Also, as far as I know, they’ve not identified a chromosome for mental illness, making that very difficult to screen for (at least in the present). I’m also fine with screening for superficial reasons (hair, eye color) if that’s truly important to you. I’ve yet to meet someone who had the money or the willingness to endure treatments for that, though. Lets face it – the technology is WORLDS away from being able to “design” a race of superhumans. Why deny current technology (the ability to screen for inheritable defects and diseases) because if done specter of future possibilities? Debate that when it becomes available – or certainly more feasible than it currently is.

12 persnickety { 10.08.13 at 7:43 pm }

It’s interesting- there was an article in one of the weekend newspaper magazines about the drop in downs syndrome due to screening and selective abortion. It’s important to note that in the state I live abortion is technically illegal (available in certain circumstances, but technically illegal) Downs syndrome is not a death sentence, but it is not what expectant parents envisage. So I think as an overall society we are becoming less tolerant of “different”. It’s interesting to me because we are in theory more tolerant now of cultural and racial differences, as well as sexual preferences, but a lot less tolerant of other differences, particularly when it comes to looks.
I think the danger is that such intolerance becomes more entrenched, and a divide will spring up between those who can afford such tinkering and those who cannot.

That said, after the first round of IVF I remain very sceptical about genetic selection becoming. I am willing to do genetic screening on any potential embryos to ensure that they have the correct complement of chromosomes (am in the process of working out if i have a translocation issue). But I would not go through the process simply to ensure that I got a specific gender or eye colour. Too much medical intervention for that. And given that the success rate for a “fertile” couple with ivf would not be any where near 100%, I can’t imagine there would be that many that would do that.

Lois McMaster Bujold’s Vorkosigan series does a pretty good job of addressing the issues that a post genetic manipulation society could face- and how different societies handle it (it’s sci fi)- Falling Free, Cetaganda, and Diplomatic Immunity all present different takes, as does the latest Captain Vorpatril’s Alliance. Subtle takes- apart from Falling Free which has it as part of the central theme. That and parenting are the underlying issue through the series.

13 FKA Denver Laura { 10.08.13 at 10:08 pm }

I can walk into a designer store and walk out with a very expensive leather purse with a brand name on it. GUARANTEED. And if they didn’t have it in stock, they would order it that day and call me to know when it came into the store.

Designer baby? I never walked out of a clinic with a guarantee. Heck, we still technically don’t even have a diagnosis (unexplained). Designer baby? I never even had a positive pregnancy test. The only thing the clinic did was call me back to see if I was still up for more injections, reduced savings, and diminished hope. Unfortunately, I think genetics can only take you so far. There is still too much ambiguity/chance out there to throw the whole thing out the window.

14 shahida begum { 12.22.13 at 10:20 am }

Then my post would be focusing on the fertility clinics and not the company itself. But,

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