Reading DNA: The Future Before Us

This story is from the NYT a couple of days ago and it shows us something of the future I’ve long wondered about–DNA sequencing.   In 2008 it cost $5.7 million to sequence one person’s DNA–that is, to decode their entire genetic make-up.   But a new DNA decoding device costs $49,000 and can sequence a genome in two hours.  In other words, the cost is coming way down.   The industry goal seems to be sequencing that costs around $1,000.   The developer of the machine discussed here thinks that will be reached by 2013. 

Now while $1000 can seem like a lot of money, in the grand scheme of medical care/ART it’s not that much.   And I assume that if that $1000 threshold is reached, many people will have their DNA sequenced.

At this point you might be wondering what this has to do with any of the topics discussed here on the blog.   Here’s the connection:   There are generally two reasons why people say it’s very important to know your genetic lineage–to know the identity of the people who provided the gametes used to create you.   One has to do with medical history, the other has to do with identity.    (You can read a bit more about this in a recent post about family trees.)   I’m going to focus on the medical history point.

Here’s another recent news clip about how the medical history point plays out:  Sperm provider has genetic defect, children created are at risk.  If you knew the provider had the defect you could monitor/evaluate the children.    But if you don’t, you can’t/won’t.

But knowing the provider’s medical history is just a proxy for knowing your own genes.  You don’t really care if his aunt had breast cancer–you want to know if YOU have a predisposition for breast cancer.  Knowing family medical history has been the closest we can come to this kind of knowledge.   But if you can read your own genes directly, then the medical history is second-best.   Far better to know if you have the genes then to know that there is a chance you do.

Now to be clear while we may be able to easily and affordably read genes in 2013, that won’t mark the time when family medical histories go out of fashion.   There’s a great deal we do not know about what genes mean/do.   Medical histories will still be important, at least until we sort that out.  But it does seem only a matter of time.

One final note:  none of this discussion relates to the identity point I mentioned earlier.   That’s an independent rationale that has to be considered separately.

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9 responses to “Reading DNA: The Future Before Us

  1. Lack of medical history is not a good reason for asking for your parents names because you might just be given your parents medical history without the names which is what you really want right? I’ve never read a well articulated argument that used lack of medical history as the basis for ending parental anonymity and requiring disclosure of non-genetic parenthood. As you suggest, technology is rapidly moving in a direction that a person will get more out of a dna profile report than they can ever obtain from one individuals oral narrative history. I bet most people would be hard pressed to tell you what their great grandparents died of so knowing your parent’s names is not likely to net nearly as much medical history as a DNA profile like the one your writing about.

    Stupid reasons like access to medical history or wanting to know the truth about genetic origins have gotten adopted kids and quasi-marital kids absolutely nowhere in their fight to get their relatives names and end parental anonymity for good. I wish they’d see that. The medical history argument is never properly articulated. Having the information yourself is not what can save your life, its being a full fledged member of your family and being party to that knowledge base that naturally occurs when parents comply with the law and raise their own children. Its abnormal not to know the health status of your own children because it can cause you to procreate in a vacuum blissfully unaware that you happen to produce children with certain congenital abnormalities or psychological problems or developmental delays. When a person is raising their own children they don’t have different pediatricians for each of them that don’t talk to one another, or different dentists, psychologists etc. Parents manage all the information about all the children they’ve created and they are constantly applying that knowledge back and forth on all the kids and back onto themselves because the health of the child can be a tip off that there is something wrong with the parent as happened with the death of my son tipping me off to a health problem that in turn tipped my father off and he had a heart attack from a clot within a couple years of finding out. That information will be used by me to keep my daughter alive and to hopefully some day save her the anguish of 12 miscarriages and son that dies the day he’s born.

    Its not a DNA profile sheet that people need, its not a static medical history that they need what they need is to be raised amongst the family that they genetically mirror or at least be in constant ongoing communication with those maternal and paternal relatives so the people raising them will know as much about the health of their brothers and sisters as if they were personally raising them as well.

    People who donate their genes also donate or agree to abandon their children at birth, its part of the consent forms that they sign. They need to be thinking about the fact that few of those children will end up raised in the same household by the same people and many of those children may not be raised by their other parent – some may be raised by two genetic strangers, not just one. Their children will be raised as only children when in reality they have a huge family of brothers and sisters and will some day have many neices and nephews. Those children benefit by being raised by people who are not only related to them but by people who are the gate keepers of information for all their siblings as well. If you create your children this way – to be raised by other people, the best you can possibly hope for as the parent who made this decision is that the people raising them will see the benefit of working to keep these children somehow connected as the family that they are. Create some kind of fluid communication network that closely mirrors the amount of knowledge parents would have if they were responsible for raising everyone of the kids themselves.

    I hope you can see I did not touch on psychological effects of knowing medical history and genetic make up at all, Just the practical day in day out stuff people need to know 365 days a year for 18 years and after that its up to the children to maintain or walk away from those connections. Before that its the responsibility of the people raising the children to be as informed as possible to minimize any collateral damage done by being raised separately from the rest of their relative.s

  2. Julie you captured the heart of my problem with the medical history argument in this statement;

    “But knowing the provider’s medical history is just a proxy for knowing your own genes. You don’t really care if his aunt had breast cancer–you want to know if YOU have a predisposition for breast cancer.”

    What I’m thinking in my head is “that’s so cute – look at what she thinks the medical history is for” Julie knowing the providers medical history is a proxy for knowing the provider. Come on now. Your heart of hearts tells you there is something disingenuous about requesting the name of the parent for medical history purposes right? Disregarding the fantasy that genes have nay inherent value to bond people emotionally – clearly its an excuse to get the nane of the person that made them so that they can look at them talk to them maybe yell at them or maybe become part of their own genetic family as well as the fictive family thats raised them. A DNA profile sheet will give them exactly what they are asking for and they’ll be going “Doh! Thanks a lot for giving me what I asked for…(damn it – foiled again),”

    • I actually do think there are serious arguments in support of identification of gamete providers based on medical history stuff. Check out the story I linked to in the post or one that goes like this: Man donates sperm and provides a perfect medical history at the time. Then ten years later, genetic defect carried by man becomes manifest. If child is alerted to possibility, child can undergo genetic testing for defect and then treatment if needed. In order to do this, someone needs to have kept records linking man and child and man needs to have obligation/encouragement to keep medical records updated. There’s a much higher likelihood that this will happen if there is a direct relationship of some sort between sperm provider and child’s family.

      There’s nothing cute or false about this in my view. In some brave new world of the future, the argument might fall apart because you’d just directly screen all children for all sorts of genetic defects, but we are actually quite a ways from there.

      Accepting this argument does not deny that there is an independent argument (which warrants totally separate consideration) about emotional/social/identity needs. Those are not the topic of this post.

      • What about if the kid needs a kidney or something like that. The folks should be able to contact the donor.
        Even if the donor is unable to donate, his identity will provide access to all the paternal relatives.
        Any fertility clinic who claims to be motivated by altruism should have no problem having their donors agree to this sort of clause. Cuz what kind of altruism is it to let a kid die????

        • Fair point. It’s an argument I didn’t note earlier.

          • a donor who hesitated at this idea would have to face up to the idea that perhaps what he’s doing isn’t about altruism

            • This is an interesting point and it might be true. I’ll need to think on it a bit longer.

              My guess is that many gamete providers are motivated in part by altruism and in part by money. it’s all about the balance between those two. As I’ve observed before, if you increase the amount of money offered you ought to get more providers. Some won’t be so altruistic as to do it for ten dollars but might consider it for fifty.

              But it may also be that imposing conditions of being identified at some point may cut both ways. For some, that’s a minus and would have to be offset by more money to keep them in the pool. For others it might actually be a plus, making the prospect of providing gametes more appealing. The striking thing about the quote from Moga is that it sounds like very very few of their sperm providers actually see anonymity as important to them.

      • I’m just saying that the history alone won’t satisfy the underlying need behind the request which is ongoing information about the health of the various paternal family members, that takes actually introducing the kid to those people so that there is a line there if needed. Just the DNA profile only gets you half way to safety its like wearing a lap belt w/o a shoulder belt and driving blind down the freeway

        • But the information about on-going health of paternal family members is only important because it tells you to be alert for various genetic defects you might carry. If you could directly examine your own genetic code, would this other information still be useful? Why? (This is apart from the point Kisrita made about transplants and such like which is a good one and not the subject of this commentary.)

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