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Concerns about genetic testing on freshers at Berkeley

5 June 2010
Appeared in BioNews 561
'Going to college is always a test of who you are, but never more literally so than it will be next fall', states The University of California (UC) at Berkeley website.

The University has recently received a great deal of attention for its revised curriculum for incoming first years, which will offer students the opportunity to have a DNA sample analysed for genetic variants. These variants will indicate fluctuations in the ability to absorb folic acid, metabolise alcohol and digest lactose. An accompanying contest will invite students to exercise their creative talents, and the winners will receive a genetic analysis of their ancestry and health, compliments of the personal genomics company 23andMe. 'The information Berkeley students will glean from their genetic analysis can only lead to positive outcomes', the website continues. 'Even negative test results will enhance knowledge, which, in this instance, will only translate into power'.

As a product of higher education myself, I'm the first to admit that knowledge leads to many things, although when you're a postgraduate student surviving on beans on toast it is difficult to perceive a direct and inevitable path to power. But the real problem with this statement - and most of the current race towards 'personalised medicine' - is the easy leap from 'information' to 'knowledge' as though the distinction between the two concepts were negligible. Information, ultimately, is just data. It may be reliable data, gathered in a rigorous fashion with dependable instrumentation. Or, as with so much data we receive through the various aspects of our public sphere, it may simply be made up. Knowledge is the distinction between these, and knowledge is why anyone bothers spending years eating beans on toast and trying to learn how to recognise and produce good data. Knowledge is the context of information, its probable effect on the material and social worlds and, ideally, how that information can best be used to beneficial ends. It takes learning, and a whole lot of thought.

Thus, my first question is whether these students - and by extension all of us who are the intended customers of the burgeoning genetic testing industry - are being offered information or knowledge? What, after all, are these eager young students expected to glean from their first foray into the genetic age? The three genes chosen for scanning are supposed to inform them whether they should eat lots of green vegetables (yes), how much alcohol they should consume (less) and whether they can eat cheese (not if it makes them sick). They don't need free genetic testing, they need their mothers. Or, failing that, the University could offer to replace the entire program with a two-week course in common sense, which would probably have a more lasting long-term benefit.

My concern is less whether an 18-year-old student will use genetic information to make irresponsible choices about alcohol: I am resigned that social pressure and intoxication are far more likely to affect student behaviour than any report the University provides. (Otherwise, I'd be first in line to tell them all that they lack the genes for drugs and unprotected sex too.) Rather, I question whether this exercise is a genuine attempt to generate knowledge, or an effort to create life-long consumers of genetic information. You don't, after all, offer someone a complete genetic scan as a prize unless you are trying to convince them that genetic information is necessary and desirable and that they should buy more of it.

In theory, UC Berkeley students will be 'eager to engage in stimulating intellectual discussions about the... issues raised by personalised medicine'. Indeed, it may be that after all the lectures and contests of artistic expression, these students will emerge as sensible individuals who will walk right past the genetic testing kits some companies are already attempting to sell in local pharmacies because they will be aware that without a whole lot more knowledge, some of which humankind hasn't acquired yet, the information from those kits is about as useful as the horoscope on the back pages of The Sun. And because the State cannot always protect us from people trying to sell us things we don't need, the next time someone told them that he could predict when they would go bald or the ideal name for their first child based on a cotton swab, they would know to ask a few questions about empiricism and medical consensus. That would probably be a worthwhile outcome for the first few weeks of a university career.

The entire premise of the program is that it will prepare students to deal with genetic information that 'will impact... the type of society they will live in'. But this is a curriculum led by people for whom 'understanding the impact of the variation in each of our genomes is the defining challenge... for this century' and this has an effect on the importance they give to genetics. I am not denigrating the critical, life-saving research into genetic disease, which is being carried out in labs around the world. And far be it from someone in my field to argue against anyone and everyone sitting down and having serious discussions about the social implications of emerging technology. But I do think that we, as a society, have other defining challenges and priorities too. Where is the course where someone says to those incoming students 'Look, it's not all about your genes, ok? No matter how much genetic information you buy, you will still have to make good choices, and be good people and do good things. That's the real test of who you are'.

31 May 2011 - by Dr Jay Stone 
A US company has launched a mail order genetic test that claims to provide 'athletes and parents of young sports competitors' with information about the user's athletic strengths, what type of training will be most beneficial, and potential injury risks...
12 July 2010 - by Nishat Hyder 
Proposals to genetically test incoming freshman and transfer students to the University of California, Berkeley (UCB), are under fire. UCB intended to offer a genetic test to its thousands of entrants, which would test three variants: genes that affect the ability to absorb folic acid, metabolise alcohol and digest lactose....
28 June 2010 - by Seil Collins 
The Food and Drug Administration (FDA) has told five US companies that the genetic tests they sell directly to consumers are unapproved....
17 May 2010 - by Rosemary Paxman 
Personal genetic testing kits are to be sold in US pharmacies for the first time, US biotech firm Pathway Genomics has announced...
4 May 2010 - by Dr Sophie Pryor 
Whole genome analysis has been used for the first time to gather clinically-useful information about the risk of developing diseases later in life. Stephen Quake, an apparently healthy, middle-aged professor of bioengineering at Stanford University in California, volunteered to have his entire genetic code screened. He was found to be at increased risk of developing diabetes, some cancers and of having a heart attack...
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