Home Science Communication Twenty years later: My 1999 human genome op-ed

Twenty years later: My 1999 human genome op-ed

by Eva Amsen

The year was 1999. I was in the third year of my chemistry degree in Amsterdam, and doing a million things on the side. One of these things was being on the committee that created the “lustrum almanak” for the 35th anniversary of our university’s chemistry students’ society. (It was basically a yearbook that only came out every five years, but I’ll keep calling it “almanac” throughout). Did I have time for this? Somehow, I did. I think time worked differently before we had social media and streaming video.

The topic of the almanac was “The Future”, because the previous one, five years earlier, was roughly themed around looking back at the past, but also because a future theme seemed appropriate for 1999. It was the last year of the millennium, and a lot of exciting things were about to happen.

I felt that we couldn’t possibly publish a future-themed almanac without mentioning the most talked about science project of that time: the Human Genome Project. Because I clearly had nothing to do aside from my studies, lab work, the almanac committee, running a career day, and running the group who organised field trips, I took it upon myself to write that piece.

Reader, it’s cringey.

But I didn’t want to spare you that cringe, so for your enjoyment I have translated the whole thing from Dutch to English and annotated it with comments from 2019 Eva. I am particularly embarrassed about one error, which I even contemplated fixing in the translation, but I left it in, just so you can see that I have at least improved my fact-checking skills. I think this might have been my first piece of non-coursework science writing, even if it was only in a departmentally published booklet.

Alright, let’s hop into the time machine and cringe along to my opinion piece from 1999.

 

Human Genome Project

(originally written in Dutch and published in the VCSVU Almanak 1999. Translated and heavily annotated with snark, corrections, and hindsight by the author twenty years later.)

When you think about the near future, the terms “millennium” and “Euro” [1] probably cross your mind, but there are also several large projects happening in the different subfields of chemistry. In the area of biochemistry/molecular biology, the Human Genome Project is certainly worth a mention, and I shall attempt to put into words what’s so special about that project. [2]

First, let’s get back to the very beginning: [3]
Cells of living organisms contain DNA, used to pass on genetic information. DNA consists of long strands of four different “bases”, these are indicated with the letters A, C, T, and G. [4] A DNA chain is formed by two strands, in such a way that the bases A and T are opposite each other and C and G as well (“base pairs”). The three-dimensional structure of DNA is a helix. This was first discovered by Watson and Crick in 1955. [5]
The total DNA of an organism is called the genome of that organism. [6] The human genome consists of approximately 3 billion base pairs, with approximately 80,000 genes in them. [7]

This space was actually reserved for an image, but I couldn’t find anything that was both suitable for viewing and for print. That’s why there is text here now. [8]

And then now what this is really about: [9]
The goal of the Human Genome Project is roughly speaking the elucidation of the complete sequence of human DNA and the localisation of the different genes.
But why is it so important that the entire sequence of all those letters is known? Many disorders and diseases are genetically determined. So if you know exactly where the gene for a disease is, it’s possible, for example, to determine whether someone could get a certain disease, by checking if the gene is present. [10] Then methods to intervene can also be discovered.
Of course this is extremely interesting for medical research, among other things. That’s why, since 1990, several countries are working in collaboration to find all the genes and decipher the order of the bases. [11] The goal is to have everything uncovered by 2005, around the 50th anniversary of Watson and Crick’s discovery. [12]

Humans are not the first organism of which scientists have wanted to know the genome. For some organisms, the search is already over, for example E. coli, a bacteria, some readers have now gotten to know it personally, which could also be said of the yeast S. cerevisiae. [13] The quests for the genes of these “creatures” were completed in 1997 and 1996 respectively. [14] The genome of the little worm C. elegans is also already known. [15]
But that was already too much of the past for this almanac. [16]

As with everything to do with expanding our knowledge of the human body, many ethical aspects also pop up. In the United States, 3-5% of the budget for the Human Genome Project is spent on studying ethical, legal and social issues around the availability of genetic information. [17] What kind of problems could arise? A much-cited example in this context is the problem of insurances. Let’s suppose: someone wants to take out a life insurance policy with an insurance company. If genetic information would be openly viewable by anyone, the insurer would be able to check if the customer has a hereditary disease. [18] Someone with a higher chance of a shorter lifespan would then be quoted a higher premium than a “healthier” person. Another point of discussion is the following: parents would test their fetus for a genetic disorder and could choose an abortion if they didn’t want a child with a higher chance of a certain disease or with a genetic disorder. [19] When the media touches on the project, these are the sorts of discussions that usually happen. [19 again].

Personally, I think that it’s certainly useful to know the full DNA sequence of humans [20], particularly to simplify research into hereditary diseases. For the project, only a limited number of people were screened. [21] (At least, I don’t personally know anyone who lent their DNA for this purpose and I think most readers don’t either.) [22] Still, there are mutations [23] that only occur in a small number of people and those will now probably be overlooked if those people weren’t screened. [24]
As far as the ethical issues are concerned: I agree with the objections against the “insurance story”. [25] It’s simply not on to have someone with a hereditary disease pay a higher premium. If insurance companies were to have access to hereditary information [26], they might as well, in the name of equality, also have access to psychiatrists’ files, to see if their customers are perhaps suicidal. [27] When it comes to the matter of abortions, I think the issue is somewhat inflated: This is already a matter of concern at the moment, because we already know the genetic location of many hereditary disorders. [28]

For any further in-depth discussions, this almanac is not the right place. [29] Do you want to know more about the progress of the Human Genome Project (and are you curious about the source of my information for this article) [30], then pay a visit to the homepage of the project: http://www.ornl.gov/hgmis/home.html [31] (NB. this is not a link, so clicking on this page is useless. You need to turn on a computer, which perfectly brings us back to the theme “future”.) [32]

Annotations by 2019-Eva 

  1. The Euro! This was written before the Euro was introduced!
  2. As I told my science writing students a decade later, you don’t need to start your essay by explicitly stating that you’re going to discuss this topic. That’s clear from the title.
  3. The cringe is strong in this sentence.
  4. Yeah. That should have been two separate sentences. It’s equally bad in Dutch. I kept the awfulness in there just for you.
  5. No! 1953!!!! This is the worst mistake. Why did I not fact check this? Why did I just guess a random year in the 1950s? Wow, I sure hope I put some more effort into the other basics, like finding a catchy image to go with this piece…
  6. Again, not a translation issue. The sentence was really that clunky.
  7. Clunky sentence aside, this is not an error! Remember, this was written before the human genome project was finished. We didn’t really know how many genes there were yet, and the estimate used at the time was MUCH higher than the real number. It was a sobering experience for us humans to discover that we have fewer genes than potatoes or water fleas.
  8. Oh. Oh no. Not only did I fail to find an image, but instead of just leaving it out, I decided to point that out in the middle of the piece. Granted, there were many other jokes in this almanac, but the middle of an otherwise serious essay is not really the place for one.
  9. I didn’t even get off-topic that much, but I had no idea how to structure the piece so that the introduction connected to the main thesis. This might also be a good point to notice that I often started a new line without starting a new paragraph.
  10. I take it back! 1953/55 was NOT the biggest error. THIS IS! Oh no. It’s so bad. I’m so sorry. I can’t believe I ever used this phrase. I’m sure I *knew* that we all *have* the same genes, and that it’s all about the variants. I must have used this turn of phrase just because I had seen others use it in popular media. But when we talk about people “having the gene for….”, that isn’t accurate. Everyone pretty much has all the genes, but it’s the specific DNA sequence within those genes that makes some people more likely to get certain conditions. (It doesn’t seal your fate. You can have the variant linked to a certain disease and still never get it.)
  11. At this time, I was only really aware of the public Human Genome Project, and not the privately-run competitor project (Venter et al). I think this is a side effect of the way that the project(s) was/were talked about in the media in Europe.
  12. It was complete in 2003, which was indeed the 50th anniversary of Watson/Crick. I’m not sure whether the prediction was at one point actually 2005, and that I wrongly assumed that was the 50th anniversary, or that I knew the goal was for it to be the 50th anniversary, and got the year wrong because, as we learned, I did not fact check the actual year of the double helix paper. (1953!!)
  13. Another run-on sentence that should absolutely have been at least two sentences, and with entirely different grammar at that. (Again, I tried to keep the bad grammar of the original.) Another thing wrong with this sentence is the inside joke that’s alienating a big part of my audience. Don’t do that! I was referencing the fact that our biochemistry groups used E. coli and yeast in their labs, but a large chunk of the audience of this piece were people from elsewhere in the chemistry department, who maybe took one biochemistry lab and forgot all about it.)
  14. I absolutely do not trust the years in this piece anymore. Let me fact check this… Oh, hey! It’s correct!
  15. 1998. I know you were wondering. 2019-Eva has you covered on the dates with her modern access to Wikipedia.
  16. Remember, the theme was “the future”. Got to bring that home to the readers. Over the course of this piece I am clearly wearing several hats. Instead of just sticking to “informative writer (who can’t fact check, but whatever)” I dip in and out of my other roles. Here as editor of the almanac, and elsewhere as a member of the department, joking with the readers, many of whom I knew personally .
  17. I got this from a .gov website at the time and I have no idea if this number is correct, and if I really meant “spent” or just “set aside for”. Please don’t ever use this piece as any source of information.
  18. Not really. The insurer would AT MOST be able to tell if this person was AT RISK for a disease with a known link to a certain genetic variant. Again, please don’t ever use this piece as source material for anything.
  19. Hoo. Wow. This is a Bold Statement, all right. In the second sentence I attempt to make it clear that it wasn’t my own point of view, but something that a lot of people FEARED would happen at the time. But that’s not clear at all! I should have started the sentence by reiterating that this is about people’s fears, and not necessarily what was predicted to happen.
  20. Which humans, 1999 Eva? Did you mean “the human genome”? Did you feel that you used that term too often in this piece and tried to mix it up with ambiguous language?
  21. I misused the term “screened”. I do it again later in this piece, and I have done it for years after that. They were not “screened”, they just had their DNA sequenced.
  22. Wrong tone of voice again. Keep the whole piece in the same tone. Then go back to it twenty years later and make fun of it in a blog post using whatever tone you like.
  23. 2019-Eva would say “genetic variants”, but I’ll let this slide because I do remember that “mutation” was pretty commonly used back in 1999.
  24. YES! This is EXACTLY WHAT HAPPENED! In fact, it’s even worse: Variants that are really common have been overlooked because the group of people whose DNA has been used to determine default sequences was too homogenous. 2019-Eva even wrote a piece about the inequalities caused by the exclusion of certain populations from genetic research. Don’t worry, it was fact-checked and edited by real professionals, and I got a lot better at writing about genetics in the last twenty years.
  25. This sentence was equally clumsy in Dutch. What do I even mean? From context, I think I meant to say “I agree that we need to be concerned about the use of genetic information by insurance companies.”
  26. Genetic information.
  27. WOAH. Woah, woah. I get what 1999-Eva is saying, and she’s not wrong in pointing out how absurd that would be, but she is extremely crass. After another two decades of life experience, I would no longer casually bring up mental illness in such a trivial way. I can’t really judge whether this was bad writing on my part, or if it was a Dutch bluntness thing, or an “anything goes” nineties mentality, but I don’t remember anyone saying anything about this line at the time. It certainly looks extremely weird and in bad taste to me now!
  28. Huh? I think what I was trying to say is that in 1999 it would already have been technically possible to do prenatal testing to find out whether an unborn child had certain genetic variants, but that it wasn’t done to that extent (only for certain chromosomal abnormalities) so it wouldn’t make sense to immediately assume that having even more information about individual genetic variants would expand the range and specificity of prenatal screening tests. I had to read over this bit several times to figure out the leaps in logic I left unexplained. Writing critique: take the reader along with your line of thought and don’t assume they’ve made all these connections on their own.
  29. 1999-Eva, you already took it way too far, but I’m glad you’re at least somewhat aware that the medium was not suited to the message.
  30. Yes. I would like to know where you got that wrong double helix discovery year. I’m very curious about that.
  31. Remember when people would give you a url with the full “http” and “www” parts included? Also, 2019-Eva was somewhat skeptical that the Oak Ridge National Lab website was THE source website for the entire Human Genome project, but I put it through the fabulous Internet Archive Wayback Machine to see what it looked like in 1999, and you know what, it looks pretty legit – and VERY nineties.
  32. Again with the stupid jokes! Oh, hilarious, a url on a piece of paper isn’t clickable. We have never heard that one before. And the theme reference! Yes, this was all about “the future”. And now, in one particularly dark timeline of that very future, we can all cringe at my bad writing from 1999.

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1 comment

Cath Ennis August 8, 2019 - 8:50 PM

This is amazing and I would like to thank you for making my day by sharing it.

I remember learning about the Human Genome Project in undergrad, too, complete with the gene number speculation and the ethical dilemmas we had to discuss in our tutorials. I probably wrote some essays about it at some point, but I doubt they survived the recent purge of my parents’ attic!

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