Whole Genome Sequencing For All

Whole Genome Sequencing For All

by Dr. Hsien-Hsien Lei
Posted August 3, 2007 in DNA in General, Personalities with DNA

genome sequenceIs whole genome sequencing for you? Jason at The Personal Genome wants to know who should be the first to get their entire genomes sequenced. Celebrities? Scientists? Business moguls? People who understand that DNA is not just a nightclub although they do DNA sequencing as well? Who else? You? Me? Are we worthy?

Jason poses a set of questions that pertain specifically to the first 10 people to have their entire genome sequenced as part of the Personal Genome Project. I will answer them specifically below the fold but here’s my general thinking on whole genome sequencing technology.

First of all, I tend to be both optimistic and cynical about the genome revolution . Although it’s clear genetics has great potential to improve public health, I also wonder how well it will be utilized.

We have many years before whole genome sequencing/personal genomics become a fact of life for the majority or even a significant minority of people’s lives. And just as Jason said, while the first volunteers of the Personal Genome Project, aka the PGP-10, are “famous” in our small circle, the same is true for whole genome sequencing. Only a few people really care about the power of DNA aside from its sensational side–paternity and forensics–so criticisms about the limited application of whole genome technology to those outside the circle of power and influence are not legitimate now or even in the future.

Kathy Hudson, founder and director of the Genetics and Public Policy Center at my alma mater, says that genomics will be recreational (at least that’s what 23andMe hopes), but that it will only be for people with “boundless curiosity and cash.” I only partly agree. The people who will be interested in the future when sequencing technology is cheap and accurate are most likely the same people who are interested now – scientists, technophiles, people with serious diseases, and amateur genealogists. For the average person with a basic knowledge of high school science, genomics will be a tool only when their physicians tell them certain biomarkers are elevated and they need to more diligent about disease prevention. Or when genetic profiles become such a strong part of our overall identity that we’d list it in our Facebooks, which is already happening in pseudo form via PersonalDNA.

Back to Jason’s questions. I don’t look upon the PGP-10 as people of privilege who got access to something that everyone wants but few people get like iPhones. They are actually guinea pigs doing something that few of us dare! Those commenting on the PGP-10’s money and fame come off green with jealousy. In their world, whole genome sequencing might be something of great value, but a general population survey will surely find more fear than desire .

And now my responses to each of Jason’s questions:

#1 Is there a real problem in the fact the first people sequenced are famous scientists from the field of genetics? If so, why? Who would be a better #1, #2, and #3? See question #7.

Choosing “famous” scientists was a good decision. They’re more likely to understand the implications of whole genome sequencing and hopefully be less likely to inflate the value of results. And they have the clout and connections to spread the news and generate funding for the Personal Genome Project.

#2 If a famous person gets sequenced does this really “give a misimpression about what genomics is all about”. How?

lv pursePossibly but let’s use the analogy of designer handbags that only celebrities and the rich can afford. Despite the fact that prices and availability are out of most people’s reach, many are still willing to settle for a knock-off or less expensive variation. If on the slim chance whole genome sequencing inspires the same kind of lust, surely people would be willing to settle for a level of DNA sequencing they can afford. You can see this in action for genealogy DNA tests where different numbers of markers are tested at different prices.

#3 Are there any reasons why having famous people sequenced might be beneficial? How do these stack up to the negatives?

Beneficial: Great PR

Negative: Bad PR

;)

#4 There are levels of fame. Paris Hilton fame (or infamy) is one thing, what about people that are famous in small circles (which describes pretty much every scientist…sorry scientists, you’re just not that famous, even the really “popular” ones). Does this matter? I hope everyone is the bee’s knees in somebody’s eyes…

It matters only in the sense that we’d eventually want genome technology to be relevant to a larger market. So if people have neighbors who’ve had it done, they’d want it done too. What are the chances that my neighbor who doesn’t have a clue who Esther Dyson is would want to follow in her footsteps? They’d be more likely to be influenced my incessant nagging.

#5 I’m not interested in comments about how genomics is only or will be only for the rich and famous, CEOs and super athletes. This is hogwash. That would be a sad state of affairs, we can all agree on that. Am I’m wrong or am I misreading the future?

You’re not wrong. And, by the way, if you can read the future, let me know. I got a few stock market questions for you.

#6 How much does it matter that the first ten genomes are from famous people or hermits or people with a myspace page or otherwise?

In my opinion, the first 10 human genomes to be fully sequenced (really the first 10 after 2, right?) is and should be a publicity stunt to grab the public’s attention and support!

#7 How likely is that, to quote from above, “all the sequences obtained over the next year or two are done on scientists with strong financial positions”? In the grand scheme of things, does it really matter who genome sequence #1, #2, and #3 is from? See question number 1 above, but be careful because you might get caught in an infinite loop.

Strong financial positions mean they don’t need to worry about health insurance, financial fallout, or other negative consequences. The more secure the first 10 people (or 100 people) are, the more beneficial genome technology will appear.

#8 How likely is it that, to quote from above, “genome sequencing [will] be based purely on money and fame” or “for those who have boundless curiosity and cash”?

What in life isn’t dependent on money and, to a lesser extent, fame?

NB: Berci at ScienceRoll and Steve at The Gene Sherpa share their opinions as well.

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(14 comments)


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14 Comments

Comment by Blaine Bettinger Subscribed to comments via email

Great post Hsien! As I’ve said before, I think it WAS a good idea to use ‘famous’ people for the “First 10.” I think that the researchers chose wisely – they picked 10 influential people in the field, rather than 10 celebrities. Sequencing the genomes of 10 celebrities would have been a huge mistake, in my opinion.

Comment by Hsien

Well, I don’t know. I’m a celebrity gawker and am always amazed at how much (undeserved) power and influence they have. I think paternity and genetic genealogy testing companies, like African Ancestry, have done a good job using celebrities in their PR campaigns. I expect the same tactic will be used in the future for other types of genetic testing.

 
 
Comment by Ricardo

I answered Jason’s questions via comments.
I think that there are two sides to this choice of “the first 10″ and it really depends on who’s looking at it.

It’s good that they are well informed of what they are doing and this shows that it’s a process that “smart people” would (and will) undergo.

On the other hand, it seems like a Premiere for the intelligent and higher educated, lacking only the red carpet and paparazzi.
It’s good PR and all, but might not make it look like something available for the average Joe.
Maybe later on if there is news that other “normal” people are getting their genomes sequenced, it might make this look accessible to anyone interested.

As for the rich and famous like Paris Hilton and such, I would have taken it as more of a PR stunt and less of a scientific endeavor.

Comment by Hsien

Don’t underestimate the power of PR and celebrity. ;) And perhaps red carpet, paparazzi, and pizza could be arranged for the PGP-10. What do you say, Jason? heh

 
 
Comment by Jason Bobe Subscribed to comments via email

Wow Hsien. Thanks so much for taking the time to answer! Very thoughtful comments. I should clarify one aspect of the PGP though, which is that we’ll be sequencing only exomes at the beginning, which is about 1% of the genome or all protein-coding regions. Full genomes is just too expensive right now, we would only be able to afford like 10 of those. But with exomes we can scale to 100K+. Plus, we don’t believe that doing full genome sequences at such high costs would be scientifically beneficial right now since we know a whole lot more about that 1% than we do other regions. As the price for genome sequences drops, we’ll sequence larger and larger portions of people’s genomes.

Thanks again,
Jason

Comment by Hsien

Thanks for the clarification, Jason! Clearly I have some studying up to do on the PGP.

I originally intended to leave you a comment but it got longer and longer and longer so I decided to make it a post instead!

 
 

[...] Whole Genome Sequencing For All (Eye on DNA) [...]

 

[...] discussion on the usefulness (or uselessness) of genomic technology over at The Rocketfish Manifesto. Snarky and negative but I suppose we could all use a dose of that [...]

 
Comment by Hsien

John Hawks shares his thoughts:

It’s nada until they have Larry King

Maybe we need to take a poll on which celebrity everyone thinks should have their genomes sequenced….

 

[...] the discussion of who should and should not have been included in the initial phase of the Personal Genome Project. He votes for Larry King, I think I’d vote for Ellen [...]

 

[...] Jason Bobe over at The Personal Genome has a great post this week called “False Alarm: The Celebrity Meme” about the use of ‘famous’ scientists in early genome sequencing.  He poses a number of interesting and thought-provoking questions about the topic.  Make sure you read the comments that others have left.  Hsien at EyeonDNA wrote so much that she made her answers a full-length post. [...]

 
Comment by Thomas Subscribed to comments via email

The more secure the first 10 people (or 100 people) are, the more beneficial genome technology will appear

Do we only want to make genome technology appear as safe or do we want to exercise critical judgment to make it (eventually) safe? I guess that issues related to the PGP may deserve consideration beyond their PR aspect…

Comment by Hsien

Hi Thomas, Thanks for your comment. I think there’s got to be both. From my observations, attitudes towards genetic testing esp. here in the UK tend to be negative. Some of it’s deserved and much of it not. You can make something seem safe as much as possible but if everyone’s caught up in the hype and fear, they may need a bit of convincing.

 
 

[...] Bertalan Mesko at ScienceRoll feels genetically naked at the thought of everyone having a peek at his genome. My advice? Get used to it, buddy. (Just kidding! More from Eye on DNA about whole genome sequencing for all.) [...]

 

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