Are there any guidelines for genomics studies of famous dead people like sequencing their genomes? It doesn’t seem like it.
I remember when I first heard of the idea of trying to clone John Lennon from an old molar. Fortunately, as far as I know no one ever tried that, but it wouldn’t surprise me if his genome sequence popped up in the news.
Why are people sequencing dead celebrities? What considerations should go into such genomics efforts?
Mendel and Beethoven
More recently researchers reported the genome sequence of Gregor Mendel. They didn’t find anything notable, but some made a big deal about this genomics study. What was the point? Was it an okay thing to do? The researchers even exhumed his body to do this. At least they think it was Mendel.
Now others have just reported sequencing the genome of Beethoven. Here again, I’d say they found nothing concretely useful. The sequencing led to all kinds of speculation. Did he have hepatitis B? Maybe. There were no definite insights into the diseases that wracked him. Weirdly the clearest thing found was that some people alive today who thought they were related to Beethoven found out unexpectedly that they weren’t. That’s not terribly helpful.
From all I’ve seen from genomics studies of dead celebrities a major con is that generally nothing of concrete value is obtained in terms of knowledge. Part of the problem is that most of these efforts are fishing expeditions. There usually aren’t good hypotheses driving this stuff.
How do you feel about researchers sequencing the genomes of dead celebrities like Beethoven (via hair), Mendel (exhumed for the purpose) and others?
— Paul Knoepfler (@pknoepfler) March 28, 2023
Why sequence dead celebs?
This all raises the larger question of whether it is scientifically or ethically justifiable to sequence dead celebrities just because they were famous.
Part of the problem here is that once people are dead they cannot consent to have their genomes mapped. Does consent end at death even for genomics?
With the Mendel and Beethoven sequencing efforts, some claimed that they both would have wanted the world to know their genomes so that is like consent. It’s very speculative.
If direct relatives want to sequence a famous family member who died that could make sense. Maybe they need to know if a certain variant or mutation runs in the family. They might have other good reasons. A potential pro of genomics on dead people, celebrity or not, is the gain of knowledge if specific logical questions are being asked.
I did a non-scientific poll on Twitter about this and most people so far seem okay with dead celeb genomics. Dr. David Cooke raised an excellent point too in response. If enough time had passed, efforts like these could be considered anthropological or archeological research. How much time would be necessary to consider the efforts more simply as research?
Sample-related ethical questions
Another issue is that the sequencing, of course, is done based on biological samples from the dead celebrities. Anybody could have obtained such samples over the years. Then they or just about anybody else (science-wise) could try to sequence DNA from any given sample. Were the samples obtained in an ethical manner?
A con to these kinds of genomics efforts is that there may be unethical behavior associated with some of the specimens
The John Lennon molar is just one example. His dentist saved a molar that was the source of DNA. Is that okay? Did the dentist tell Lennon he was keeping his molar?
The source of what they think was Beethoven’s DNA was his hair. Some of the original sourcing may have been highly questionable or downright just awful. From The New York Times:
“It was March 1827 and Ludwig van Beethoven was dying. As he lay in bed, wracked with abdominal pain and jaundiced, grieving friends and acquaintances came to visit. And some asked a favor: Could they clip a lock of his hair for remembrance?
The parade of mourners continued after Beethoven’s death at age 56, even after doctors performed a gruesome craniotomy, looking at the folds in Beethoven’s brain and removing his ear bones in a vain attempt to understand why the revered composer lost his hearing.
Within three days of Beethoven’s death, not a single strand of hair was left on his head.”
People were so eager to get clips of Beethoven’s hair as remembrances (souvenirs?) that by the time he was found dead, he had no hair left. That’s horrible.
Modern DNA genomics researchers are not responsible for that ugly hair-swiping scene almost two centuries ago, but what if some of the hair they analyzed was obtained in a questionable way originally? How would anyone know?
It’s worth raising the point that anything that any of us discards with our DNA on it could be used as the basis for genome sequencing us or otherwise analyzing our DNA without consent.
The case of Abraham Lincoln
More than thirty years ago a case was made to do some limited genomic testing on biological samples from President Lincoln. The samples were retained at autopsy after his assassination and held securely so they are definitely his. It has long been speculated that Lincoln may have had Marfan syndrome, a genetic connective tissue disorder.
Biologist Darwin Prockop proposed to the museum that houses Lincoln’s specimens to isolate DNA and then do genetic testing for Marfan Syndrome. This was a solid, logical idea to test.
A committee began review of the request to analyze Lincoln’s DNA. If you read the committee’s statement it sure seems like they were going to approve, but ultimately they denied the request. It’s very interesting to read over the committee’s deliberations and the kinds of questions they asked. How would a similar committee deliberate now based on the relative ease of whole genome sequencing?
Lincoln’s case highlights another potential positive of genomics on famous dead people. If they had a genetic disease, the new information could increase understanding and acceptance within the public. People who have specific genetic conditions may also feel more positive about themselves.
Standards on celeb genomics
The dead celeb sequencing trend is likely to continue. How should we evaluate such work?
Here’s my informal start on proposal for standards on dead celebrity genomics.
If you’re going to sequence the genomes of dead celebrities you should at a minimum have a widely-accepted compelling reason to do it (not just “hey, this would be cool”). Plus, ideally you need some kind of direct family consent or clear intent from the deceased that they were open to such studies. Also, you should know that the source material is authentic and ethically obtained.
There are many good reasons for researchers to sequence people who have died such as providing insights into human evolution and past serious diseases like the plague. I can see other logical rationales too.
For me the fact that the dead person was a celebrity just isn’t one of them.
Overall, there’s nothing wrong with some genomics for the fun of it if you have specific funding to do it such as for educational purposes. Instead of researchers sequencing dead famous people for no particular reason, I’d rather see students sequencing organisms from their backyards or parks. How about sequencing cloudy water from a nearby pond? Sequencing everything in a pizza? Verifying what kind of fish you’re eating?
This all sounds more fun and useful in some ways. Get kids excited about genomics.