Paternalism and "Patient Beware" Messages Hit DTC Genomic Testing

Or a man told he lacks genes linked to an elevated risk of heart disease might decide to smoke, eat lots of salt and saturated fats, avoid exercise or develop a large paunch, any of which could overcome his supposed genetic protection.

“It’s important to separate hope from hype,” Dr. Jennifer House, president of the March of Dimes, said at a recent meeting of its national communications advisory council. “Direct-to-consumer genetic testing is a buyer-beware market. Consumers need to be very, very cautious.”

She said that in addition to a possible waste of money — the cost of genetic testing ranges from about $300 to $3,000, depending on the extent of the analysis — there is serious concern about the quality of information consumers receive from testing companies.

From: "Personal Health - Buyer Beware of Home DNA Tests - NYTimes.com."

1. I may live to 100. A DTC genetic test may indicate I have an SNP related to longevity (we think). Does this mean I'm going to go cliff jump, eat my way through my late 20s, take up smoking, or eat chocolate for breakfast? Hell no (except for maybe that last one...)

2. Hope from hype sounds great. Do I expect DTC genetic testing to 'cure' Celiacs? Or breast cancer? Not mine, maybe (and don't worry, I don't have breast cancer, but I DO have Celiacs). But I also understand that to advance the study of these conditions as a whole DTC genomics companies are paving the way for consumers to consider our genetic data our OWN asset. Any sector that accomplishes this lofty goal, and the data to connect (eventually) my personal health data to public health researchers with whom I elect to philanthropically share it has my vote for a sector where e-Patient advocacy is beneficial (mine, and others).

3. I find hairplugs a possible waste of money. I find cars when you can bike or walk or take public transportation a waste of money. I find gastric bypass and cage-fusion spinal surgery a possible waste of money. See my point? I am not qualified to judge any other individual health/tech consumer's 'waste' nor "money well spent" valuations.

The truth is, Dr. House isn't telling us anything we don't know here. ALL of medicine is a buyer-beware market. This is why we have procedures in place (sort of) like 'informed consent.'

All of science, all of the health-food market, even going to the gym is a BUYER BEWARE situation (you've seen the release forms you have to sign for a gym membership, right?)

Back to basics...

1. Would I like to see 'informed consent' forms standardized for the DTC genetics market? Absolutely. Do I think some DTC genetics companies are doing a good job with this? Yep.

2. Could DTC genomics companies provide more decision-support tools (forms, exercises) that help me make an informed decision and teach me about the process of genetic testing that's not whole-sequence? Yep. I mocked up a quick easy 100 point one to look at risks/benefits of sharing my 23andMe results. It took me about 10 minutes to draw out, but about 1 hour to think my way through.

3. Should the FTC judge 'accuracy' and 'reliability' of these tests? No way. I can buy some strange Chinese ginseng virility booster over the counter at the Palo Alto 7-11. Chances are that capsule is more harmful for my health than spitting in a tube for partial genomic sequencing.

4. Could a model of consumer education based around that ALREADY well-developed and in use by the Personal Genome Project (albeit a greatly edited one, spliced way down to the middle school reading level and presented in cartoon format) help DTC genomics companies educate their customers? But of course.

As for the DTC tests being a 'waste of money,' that's a specious argument that lessons the quality of the debate and pushes us backward, not forward.

It certainly does NOT take into account the motivations consumers have for purchasing DTC genetic testing, which I'll detail in tomorrow's post.

Posted via web from Jen's Posterous

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