Genetics: Exceptionally Cool?
I hope this science post doesn’t scare off the flood of marketers who were directed here after Seth Godin linked to Sean’s idea last week. Our goal is to make this interesting for a variety audiences.
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While browsing the “Design and the Elastic Mind” exhibit at the MOMA a couple of months ago I was shocked by the number of genetics-related installations. At the time I was completing my master’s degree and felt so immersed in the microcosm of clinical genetics that I had temporarily forgotten about the mainstream fascination with the sexy and futuristic aspects of the subject.
The state of California’s recent cease-and-desist order directed at several direct-to-consumer genetic testing companies has served to highlight the tension between medical and recreational genetics. I have been surprised by the strong adverse reaction that has been generated. In a recent post, blogger Daniel McArthur makes a good case for recreational genetics, and calls out the medical community for representing the old-school camp of the current genetic testing regulation “turf war.” I also thought this article on Wired’s website provided a strong argument that I had not considered previously:
“The assumption that there must be a layer of “professional help” is exactly what the new age of medicine bodes — the automation of expertise, the liberation of knowledge and the democratization of the tools to interpret and put to use fundamental information about who we are as people. Not as patients, but as individuals. This is not a dark art, province of the select few, as many physicians would have it. This is data. This is who I am. Frankly, it’s insulting and a curtailment of my rights to put a gatekeeper between me and my DNA.”
Here are some of my thoughts on the issue:
1. A level of oversight and transparency regarding the laboratory aspects of the testing is essential. If I am going to spend $1000+ on this product I want to know that, at the very least, there is a process in place to avoid sample mix-ups and that the lab techniques being used are up-to-date and credible.
2. There should be a distinction between recreational and medical genetics. There is no harm in learning that you have a genotype that makes your pee smell after eating asparagus (a much cheaper option: eat some asparagus, wait a couple hours, and pee). And you certainly don’t need a physician to interpret that information for you.
On the other hand, learning that you are predisposed to certain diseases requires a little more foresight and follow-through. For example, if a test reveals that you have an increased risk for developing breast cancer, should you go for a mammogram earlier than you would if you were at the general population risk? If so, how much earlier? Would your family physician be liable should he/she fail to refer you for a mammogram and you develop breast cancer? There needs to be some consensus developed for these kinds of issues, and this requires oversight.
(A potential problem with this approach arises when, 5 years from now, researchers discover that that same genotype for asparagus-pee predisposes you to developing early onset Alzheimer’s disease.)
3. Genetics professionals who fail to recognize the fun, cool and recreational aspects of this field risk alienating themselves, and will miss out on the opportunity to increase their visibility and further their own profession.
HER NATURE HIS NURTURE 
As one of those marketing types linked here from Seth Godin, I can speak for myself & say that I am not at all ‘scared off’, on the contrary! Not only is your personal expertise highly interesting to me, it is rare to find a blog that combines two unrelated fields in such a fluid way. It’s great & I’ve already bookmarked your site, so thank you!
That said, I remember a piece (it might’ve been 60 Minutes) that investigated the ‘recreational’ genetics tests available to African-Americans, in order to determine an individual’s location-specific tribal roots in Africa. The reporter presented each interviewee with a summary that stated that the person was from, say, northern Sierra Leone. They wept with joy at discovering this, it was really something to see – the potential of modern science was powerfully illustrated.
But then the reporter presented her with a second summary by a different company. This one described her background as Nigerian. Then, a third summary from yet another company claimed her family was from Senegal. Elation turned into confusion, & understandably a degree of skepticism.
I’m not sure how well this parallels with testing for cancer-causing genotypes; but at best, it seems that genetics is not yet sure enough of itself to be marketed to consumers with such certainty. You said as much regarding the asparagus-pee genotype might be related to Alzheimer’s.
As another involved with packaging non-disease genetic information for everyday lifestyle use, I naturally fall on the side of an open system.
It is important that labs not confuse samples and otherwise mix things up. But there are well proven safeguards to prevent this. Though of course there is always the chance of some human error.
I disagree about the distinction between medical and non-medical genetics. Most of the physicians in the US and the world have the same amount of genetic knowledge as lay people, which is very little. That’s just the way it is. It will take three decades to build the kind of expertise necessary for physicians to understand the scope of genetics. And there are so few genetic counselors, that it would be impossible to provide even cursory services to the US population.
As to the uncertainty, I think it worth noting that the public health community has no hesitation in telling people to lose 30 pounds or else become diabetic or have a heart attack. Yes, there is an increased statistical risk. But those and other outcomes are far far from certain. The same is true for other major diseases. So my question is “why do commentators want virtual certainty in consumer genetics but accept massive uncertainty in other health areas?”
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allie, your comment about the MOMA exhibit reminded me of a really cool movie you might be interested – it’s called “Strange Culture” and it chronicles a artist/university professor who made art revolving around genetically modified food.
It’s really a trip of a documentary as he ends up being suspected for bioterrorism and gets stuck in the courts for four years.
http://en.wikipedia.org/wiki/Strange_Culture
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Loved reading thhis thank you