10 November 2009

let. to ed. re: "Your genome isn't that precious - give it away" -- New Scientist

We read Katrina Voss's article on open access to genomic information (22 August, p 22) with great interest. Summing up her argument, she quotes her father: "I'm not worried, I'm just not that important."

Narcissists aside, we can all agree that we aren't that important to the rest of the world. However, what Voss fails to account for is the small cadre of people to whom we are that important. This set includes friends, relatives, employers, potential mates, and even stalkers who already look at the wealth of information available online.

One instance where this data could be misused would be by adopted children, or even the children of sperm donors, to find parents who might not want to be found.

Similarly, certain professions could be affected from the outset. Genomics has the potential to touch all aspects of sport, from using genetic information for draft picks, to mandatory genetic testing to screen out players at all levels of the game at risk of serious and unanticipated ailments.

With the growth in understanding the links between athleticism and genetics, public disclosure of personal genomic information of athletes may be just a logical extension of what is already in place. Analysing how athletes deal with this new form of personal information will be of particular interest to the rest of society as it learns how to manage the eventual disclosure of personal physical and genetic information.

Dov Greenbaum & Mark Gerstein, New Haven, CT

Above text is a published letter . The Citation is:
"Can't run from DNA," Dov Greenbaum & Mark Gerstein
New Scientist Magazine, issue 2727 (23 September 2009), pp28-29
http://www.newscientist.com/article/mg20327270.400-cant-run-from-dna.html

It is in response to:

http://www.newscientist.com/article/mg20327224.500-your-genome-isnt-that-precious--give-it-away.html
Your genome isn't that precious – give it away
New Scientist, 24 August 2009 by Katrina Voss
GENETIC tests are becoming increasingly fashionable, and it's easy to see why: they allow people to find out all kinds of things about themselves....

Also, see commentary on magazine site:
http://www.newscientist.com/commenting/browse?id=mg20327224.500&page=5

[(Return) to Other Publications Page]



Original Submitted Text (before editing!):

We read with great interest the recent article entitled "Your genome isn't that precious - give it away" (Issue 2722, August 22, 2009).

Ms. Voss suggests that unrestricted and open access to genomic information will greatly benefit society with little lost to those who provide access. Summing up her argument she quotes her father: "I'm not worried, I'm just not that important."

Narcissists aside, we can all agree that we aren't that important to the rest of the world. However, what Ms. Voss fails to account for is the small cadre of people to whom we are that important. This set includes friends, relatives, employers, potential mates, and even stalkers who already look to Google, Facebook, Myspace, Twitter and other online sources for information about you or your close personal relatives. Further, data laid bare online could be used by adopted children (or even sperm donees) in an effort to find parents who might not want to be found. It is often these groups of people who we might especially want to limit access to our genomic information.

But sharing of genetic information raises concerns even beyond this group of close associates. In the past, people revealed private information about themselves only to close confidants – people they knew and saw regularly. Now, with the advent of social network websites (and new broader conceptions of personal boundaries and even ‘friends’), we nonchalantly reveal all forms of personal information to unfamiliar third parties.

This current laissez-faire attitude to privacy --likely to extend to personal genomic information, should be of special interest to athletes. Genomics has the potential to touch all aspects of sports, from using genetic information for real and fantasy draft picks, to mandatory genetic testing to screen out players at all levels of the game at risk for serious and unanticipated injuries, to valuation of a player worth; moreover, it is relatively easy for a scout, team manager, or an obsessed fan to surreptitiously obtain genomic information from a discarded bottle or a sweaty glove or racket, and submit it for analysis.

In fact, genetics has always played a major component in athleticism, whether its Lance Armstrong’s inhuman resting and maximum heart rates and substantially below average lactate levels, or Michael Phelps disproportionate arm span and hyperlaxic ankles. It is only a matter of time before genetics becomes an overt component in our thinking and analysis of The Game.

Professional and Olympic athletes are of course already familiar with managing their very public personal information, body measurements, performance statistics, and effectively real-time video surveillance for large fractions of their career, both on and off season. With the growth in understanding the linkages between athletic ability and genetics, public disclosure of personal genomic information of athletes may be just a logical extension of what is already in place. Analyzing how athletes deal with this new form of personal information will be of particular interest to the rest of society in learning how to manage and deal with the eventual disclosure of personal physical and genetic information.

Dov Greenbaum JD MPhil PhD
Mark Gerstein, PhD