by Dr. Hsien-Hsien Lei
Posted August 3, 2007 in DNA in General, Personalities with DNA
Is 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 â€œgive a misimpression about what genomics is all aboutâ€. How?
Possibly 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 scientistâ€¦sorry scientists, youâ€™re just not that famous, even the really â€œpopularâ€ ones). Does this matter? I hope everyone is the beeâ€™s knees in somebodyâ€™s eyesâ€¦
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 Iâ€™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 Iâ€™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?
#7 How likely is that, to quote from above, â€œall the sequences obtained over the next year or two are done on scientists with strong financial positionsâ€? 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, â€œgenome sequencing [will] be based purely on money and fameâ€ or â€œfor those who have boundless curiosity and cashâ€?
What in life isn’t dependent on money and, to a lesser extent, fame?
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