Access to DNA Sequencing and the Future Importance of Genetic Heritage

This story in today’s NYT made me think once again about the importance of knowing one’s genetic lineage.   That’s a topic that has been frequently discussed here, recently in the context of the Pratten case from British Columbia. 

For many advocates of donor-conceived and adopted children, having information about one’s genetic lineage is of critical importance.   (I realize that having access to the specific individual who provided the genetic material and having some particular defined relationship with that individual are also important, but I think each of these is slightly different and I only mean to raise the first here.)

As I understand it, information about genetic lineage is important for two reasons.  First, genetic heritage provides valuable information about one’s susceptibility to various genetically-linked conditions.   Second, genetic heritage is important (at least to some people) in formulating their own sense of individual identity.   It is, for those folks, about who you really are.  

I’m going to set that second reason aside just for the moment and focus on the first.   It does seem that as we have learned more about DNA there is more to be gained from knowledge about one’s genetic make-up.   For example, we have a greater understanding of susceptibility to particular forms of cancer or efficacy of different cancer treatments based on genetic analysis.     

But it seems to me that for this purpose information about genetic lineage is essentially a stand-in for direct knowledge of one’s own genetic make-up.   In other words, if one could directly analyze one’s own genetic make-up, that would be more useful than having information about a family history of illness, etc.    After all, not every genetic characteristics exhibited by your forebears exists in your genetic code.  And some that were not in theirs may turn up in yours.  

It seems to me that the inevitable march of science will lead us to the point where a person could have direct knowledge of one’s own genetic make-up.  At that point, the medical argument for access to genetic lineage seems to me to be quite weak.  

Which brings me to today’s story about bringing DNA sequencing to the masses.  We’re not there yet, but as the story makes clear, we are on the way.

All of this makes the second reason I mentioned above for seeking access to genetic lineage–something to do with formation of individual identity–more important.   That’s been discussed from time to time on the blog and I’m sure it will be again.  I won’t return to it just here, though, save to note that it seems to me a very tricky question.   How we construct our own identities is incredibly complicated.   So many different things go into that, it’s hard to pick them apart and try to think about the importance of just one.  

But as I contemplate this question, for some reason a conversation between Harry Potter and Dumbledore comes to mind.   I think it is at the end of the second book (HP and the Chamber of Secrets.)   Harry worries that he might really be an heir to Slytherian.   In turn Dumbledore says (here I’m just doing an inferior paraphrase) “It’s the choices you make that define you, not the particular inherent talents that you happen to have.”  

But that’s for another day.


19 responses to “Access to DNA Sequencing and the Future Importance of Genetic Heritage

  1. It’s about the ability (freedom/choice) to form meaningful connections if and when they become important to us (it’s best if it’s just set up that way from the beginning but any effort at a later date to do so is better than nothing) . I just don’t think reason and analysis is going to ever win out in the end. This stuff is way way to intimate to reduce to bits and parts. It’s not something you or anyone of us can understand with logic – only heart . Yes, I know, cheesy/cliche but it’s true.

    • I’m assuming here that the “it” you refer to is something like being able to access the person who provided the gametes? I am inclined to think that this is a question that touches both head and heart. I’ve seen very logical and totally rational arguments advanced about medical necessity. I think those are different in an important way from arguments that are based on development of identity/ability to form meaningful connections. I’m not suggested one is better or one worse, simply that they are different and deserve to be considered separately. Beyond that, the former argument–the one about medical necessity–changes as technology changes. I’m not sure I’d say the same for the latter.

      There’s also a different point your comment may raise. To me, thinking about the law means thinking beyond what might suit me individually to thinking about what the rules for everyone should be. There are tons of trade-offs that must be weighed when we make law about anything. To take a totally off point example, requiring people to wear motorcycle helmets infringes on individual freedom to choose to ride without a helmet but serves broader interests in protecting people, even from their own foolish choices.
      It’s true that reason and analysis cannot win out on this on the individual level–some people will just value riding without a helmet no matter what. But on the global level of what the law should be I think we have to make a (rational?) choice about granting people this liberty or not. In that level, I htink there’s more room for logic and reason.

      • “To me, thinking about the law means thinking beyond what might suit me individually to thinking about what the rules for everyone should be.”

        Which is why the repro-industry needs regulation but that would infringe on individual freedom. It really all boils down to the individual regardless of the law – as Dr. Samuel Johnson observed:
        “How small of all that human hearts endure, That part which laws or kings can cause or cure! “

  2. I’ve always felt the medical histry argument was weak, it feels like a thinly veiled attempt at something else altoghether, maybe people are not even sure what. I think it sounds very impersonal which makes it a safe reason to search; it guards against getting hurt if the request for contact is met with ambivalence or outright disdane.
    I also think that “needing t know who I am” is a week argument for winning the legal right for everyone to know who their relatives are and also the right to know if they are not related to the people they call family. I think the best argument in favor of knowing our DNA and its relation to the DNA of others is specifically so that people can avoid romantic encounters with their relatives. I’ve mentioned before that its a public health issue. To me that is the reason that can’t be gone around, its just fact.

    • Uh oh, the trouble with identifying avoiding incest as the biggest problem is that people are likely going to say, “well, that’s easy: everyone should now have DNA tests with their partner before having children, and use better donor gametes if there is a chance of any problem.”

      I don’t think we have to identify or specify a single reason why donor gametes sucks. We can just agree there are lots of reasons that it might sucks, and prohibit it out of prudence. There’s no right to it, no compelling argument for it, because being childless is a perfectly common normal thing, not a life-threatening disease. A big reason for me is that making an industry out of procreation wastes energy. Also, it leaves people lonely and single, passed over for the false promise of donor perfection.

      • “Uh oh, the trouble with identifying avoiding incest as the biggest problem is that people are likely going to say, “well, that’s easy: everyone should now have DNA tests with their partner before having children, and use better donor gametes if there is a chance of any problem.”

        No I don’t think people should be DNA tested at marriage that is stupid – find out that you are related to someone AFTER you’ve been screwing around with them? (Or in your case holding hands on Aunt Bea’s front porch)? No do it at birth on the birth certificate so people know if they are related to the family that is raising them.

        • I agree we should do it at birth, and record if it is a match on the birth certificate (and no name should be recorded on the BC that is known not to be a progenitor). The problem is, all the people who that wasn’t done for. It used to be pretty reliable that the names were really the progenitors, now we’ve had twenty years of routinely listing the wrong name, so people are going to be pressured into testing their fiance to see if they’re related, or if one has Huntingtons or what not. I think we should have a law that all sperm bank records be released and all birth certificates be corrected.

    • I suspect that here, too, advancing technology may change the analysis. Given the prevelance of various genetic disorders (I’m thinking specifically of Tay-Sachs but I’m sure there are others) I wouldn’t be surprised to see genetic screeing of couples planning to have children become more routine and more detailed. I think that this might allow people to rule out genetic combinations that pose risks. (It might lead people to choose to use third-party gametes if their own turn out to be unsuitable, but that’s a whole other line of thought.) That, it seems to me, might take care of the accidental incest risk.

      I think each of the (now three) reasons advanced is worth thinking about. (I’m counting medical need, identity-development, and now accidental incest.) The first and the third seem qualitatively different to me, as changes in technology can directly change how we think about them.

  3. Good point, I agree that access to medical history would be moot if we had direct knowledge of our genes. But that assumes there will always be genetic testing labs and enough energy and money to pay for everyone to do that. I think it’s likely there will be a huge convulsion of the economy, with martial law and starving people and we’ll be lucky if we can get a broken bone reset or a bullet wound patched up. I wouldn’t count on DNA testing being a sure thing for everyone, I think it’s likely most people will never have access to it, it will be a blip of history.

  4. “Also, it leaves people lonely and single, passed over for the false promise of donor perfection.”

    What world do you come from? It would be exceedingly rare for straight women to choose to be “lonely and single” because they are all starry eyed about some “perfect” donor. Straight people don’t

    Actually donor conception SOLVES the problem of the single and lonely.
    (although, as discussed, in can create OTHER problems)

    And in my opinion, yes, childlessness is a huge social problem. Especially in the age of the nuclear family, single and childless people are basically family-less. And it only gets worse as they age.

    • A girl I was dating in the 90’s (sleeping with, but not allowed to be her “boyfriend”) told me that if she didn’t meet the right man she would go with the “turkey baster.” She said this to me knowing I was craving her acceptance and commitment. But that was the 90’s, when it was wrong to be “co-dependent” and “needy” and anyone who thought women should marry the father of their child was a cro-magnon man. I was a perfectly good specimen genetically, but I was too traditional, I would have wanted to give her children my last name, which was unacceptable to her. (Now she’s married and I think her kids have hyphenated names).

      • Hyphenated names are a genealogist’s nightmare. In fact even if boy does not marry girl….I think baby should get pop’s last name period. But that’s because its easier for me to keep track of who belongs to whom that way. And when I say pop i don’t mean social pop.

        • Do you mean that the baby should have the man’s name and not the woman’s? And that’s why, exactly? So you can keep track of “who belongs to whom?” Even from your perspective (which I don’t agree with) isn’t it also important to keep track of the mother? Please don’t tell me that you think the woman, too, should take the man’s name (on the who belongs to whom theory).

  5. Odd choice to point to a married woman who had children the old fashioned way, to back up your point that women would rather choose donor conception over being married to a compatible partner.

    Compatible partners you weren’t- Seems like you had different values and lifestyle, so it’s just as well for both of you that the relationship didn’t work out. But remember it takes two; just as she wasn’t willing to change who she was, neither were you.

    And neither of you should. But it sounds to me (correct me if I am wrong) that you think as a woman, she should have changed for you, while you should retain the liberty to retain your values, lifestyle and opinions.

  6. you know what will go a long way to decreasing use of donor sperm as effectively as a fertility treatment? An HIV vaccine.

    It would be quite simple for many single women to have unprotected sex- for free- with men outside of a committed relationship but they are afraid of exposing themselves to HIV.

    Not that you would consider this a better scenario (although I would).

  7. There are several distinct flaws in the argument that simply getting your dna decoded will be enough any time soon.

    1. They do not know which gene or genes cause (or cancel out) the majority of diseases and haven’t even started to tackle the 7,000+ rare diseases…

    2. You may have one or more genes that point to a specific disease but your other genetic makeup may change the domninance of the disease in your line so you may be at more or less risk and your family health history provides the inheritance picture which is a key part of your risk profile.

    3. Unless they can also pinpoint the specific codes that activate a diseases before the norm or opposite sex, the most common known disease this happens in is breast cancer, then again, your family health history is the only source to give you that knowledge.

    We are so far away from dna decoding as a real tool in everyday health matters that it isn’t even worth discussing at this point. Once they have identified actual genetic makeups for the most common diseases then it will be possible to consider…until then the best defense is a well documented family health history that is updated annually.

    • Even if we are far away (and I don’t really know how far away we are) I think it is worth thinking about. It’s worth thinking about because it helps us (me?) understand why we might or might not make particular rules. It’s important to remember what is and is not real, of course. But it’s also important to think about how things might be different some day and what difference the difference might make.

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