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Celebrity Genomes on DVD

As I mentioned recently, James Watson is about to be the first person to have his entire genomic information handed to him. According to this article in Today’s issue of the Observer, Watson “has decided to go ahead and have his entire genome put on the internet this week.” I’m not sure what the Observer used as its source – according to my research Watson hadn’t yet decided what he was going to do with the sequence. Update: A huge story from Newsweek states that Watson has decided to release his entire genome to a NIH database (minus the ApoE gene)!

I hope this gets lots of media coverage. This is a HUGE moment for genetics, one that we will all look back on. And I have to admit, I am very jealous of Watson’s opportunity! Here’s a great article on the subject, well worth a read!  Here are some highlights from the Observer article:

“Jim Watson, the Nobel laureate and co-discoverer of the structure of DNA, will be presented with a unique scientific prize this week: a DVD disc containing details of every one of the 3 billion units of DNA that make up his genes.

The award – to be made at Baylor College of Medicine in Houston on Thursday – is unprecedented. Yet if biotechnology companies get their way, a host of other scientists and celebrities will soon follow suit.

Among those lined up are Stephen Hawking; Larry King, the US talk show host; and Paul Allen, co-founder of Microsoft. In addition, Watson has been pushing, in private, for British stars, such as Wayne Rooney and Kate Moss, to be asked to have their genomes published.

The aim is to defuse public worries as it becomes cheaper and cheaper to decode genomes. The first genome cost more than $1 billion, and took several years, to sequence. Now costs have dropped to under $1 million and could be cut to under $1,000 in a few years.

Armed with this knowledge, doctors will be able to personalise treatments so medicines meet specific individuals’ requirements and match their genetic blueprints. Hence the involvement of famous scientists and celebrities. They are being involved to calm public worries that sequencing would provide data that could be misused by police, insurers or employers. But many scientists dislike involving famous people this way. At a recent genomics meeting in New York, several leading scientists raised objections to the rise of celebrity genetics.

‘I’d hate the availability of genome sequencing to be based purely on money and fame,’ Professor Michael Ashburner, a geneticist at Cambridge University, told the journal Nature. ‘Just doing famous or very rich people is bloody tacky, actually.’

In addition, many scientists fear cheap genome sequencing could have other, worrying consequences. Professor Steve Jones of University College London, said: ‘If you make your genome public, you are not just revealing information about yourself and what diseases you might be susceptible to, you are also giving away crucial data about the kind of illnesses your children might be prone to. Each of your children gets half your genes, after all. They might not want the world to know about the risks they face and become very unhappy in later life that you went public. Your other relatives might equally be displeased.’

This point has been acknowledged by Watson. Nevertheless, he has decided to go ahead and have his entire genome put on the internet this week – with the exception of one gene associated with the development of Alzheimer’s disease – Watson does not wish to reveal his risks of getting the disease.

However, there are other concerns, as Professor Ashburner points out. ‘Anyone who commits relatively minor offences can have their DNA taken and analysed. At present, the main use of this process is to create a DNA fingerprint that can be used to identify that individual. But soon we will be able to create an entire genome sequence of that individual from a swab or blood sample. We will end up knowing everything about their genes. In the end, we could have millions of people on a database and know every single genetic secret of each person. That has to be a very worrying prospect.’ “

I missed a couple of these ethical issues when I wrote about the $1000 genome, but Keith of Omics! Omics! was kind enough to share them with me in a comment to that post.

It does make some sense to sequence the genomes of famous people – it gives sequencing some media attention and plants that seed in people’s minds. I do have a suggestion for the researchers at 454 Life Sciences (who sequenced Watson’s genome and are probably looking forward to finally hearing from me!), why don’t you sequence a few genomes from some people who are suffering from disabling genetic disorders? Although remote, there might be BOTH a medical benefit and the necessary media attention!

Blaine Bettinger

Intellectual property attorney, genealogist, and author of The Genetic Genealogist since 2007

11 Comments

  1. Thank you Sandra, and I’m honored that it inspired you write about the topic! You’re right about Venter, although I’m still not sure how much of that sequence was his – I always see “largely” or “much of” as disclaimers.

    I picture myself being handed a DVD containing my genome, and I would be so overwhelmed. Of course, I wouldn’t get all the ‘help’ that Watson will. I imagine that his information will be intensely mined over the course of the next few weeks – we’ll all know more about him then we probably want to!

    Thank you for reading!

  2. I always thought the genome project missed a financing opportunity by not auctioning off naming rights to various chromosomes in exchange for the funds to sequence them. Imagine the headlines: “A new disease gene was found halfway between Google and Microsoft on Chromosome 1…”

  3. great article, but i am seeking the dna sequence data on the internet 343 pm edt, and still cannot locate it. any suggestions.

  4. ‘I’d hate the availability of genome sequencing to be based purely on money and fame,’ Professor Michael Ashburner, a geneticist at Cambridge University, told the journal Nature. ‘Just doing famous or very rich people is bloody tacky, actually.’

    I totally agree w/this – unfortunately, these will be the only ones who can afford to have it done – or have the publicity juice that can bring more attention and bring the costs down.

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