Biotech Ethics

From the Canadian Medical Association Journal (CMAJ): Federal government says regulation of consumer genetic tests is unnecessary:

Industry forecasts indicate that Canadians will soon face a marketing avalanche to persuade them to purchase personal genetic test kits. But while American officials are moving to regulate do-it-yourself genetic testing kits because of concerns that results may be erroneous or may prompt patients to alter their medications or make other unhealthy choices, Health Canada says it is open season for companies hunting for Canadian sales.

Many have expressed worries about direct-to-consumer genetic testing. I’ve blogged about some of those worries, including here:

• Personal Genomics: the Ethics of Shared Uncertainty
• Geneticists Challenge Personal Genomics Companies’ Results
• New Science Casts Doubt on Gene Tests

But it’s not at all clear that the permissive attitude of Health Canada is going to result in an avalanche of tests being made available in Canada. A lack of regulation can actually mean a lack of certainty for companies, and a lack of certainty makes for bad investments. I personally spoke to one American biotech executive a couple of years ago who cited Canada’s relative lack of regulations as one reason why her company was hesitant to invest here.

A new study published in Nature suggests that, while height definitely has a strong genetic component, the contribution of genes to height is far from simple. See the report here, via Scientific American: Complex Genetic Trait Research Reaches New Heights

Height has a lot to do with genetics. If your parents don’t need a step stool to reach the top shelf, you’re probably right up there, too. About 80 percent of height is due to DNA. The rest depends on diet and other environmental factors.

In the new study, researchers analyzed DNA from more than 180,000 people, looking for genetic differences that dictate height. The scientists, part of a consortium called the Genetic Investigation of Anthropocentric Traits (or GIANT), found 180 gene regions that govern how tall we get….

Presumably this is informative to people who were either excited, or worried, about the prospect of gene therapy being used someday by parents who wanted to give their kids the advantage of a little extra height.

OK, so the FDA seems unlikely to require the probably-soon-to-be-approved GM salmon to be labelled. See this story by Lyndsey Layton, for the Washington Post: FDA rules won’t require labeling of genetically modified salmon

…As the Food and Drug Administration considers whether to approve genetically modified salmon, one thing seems certain: Shoppers staring at fillets in the seafood department will find it tough to pick out the conventional fish from the one created with genes from another species.

Despite a growing public demand for more information about how food is produced, that won’t happen with the salmon because of idiosyncracies embedded in federal regulations.

The FDA says it cannot require a label on the genetically modified food once it determines that the altered fish is not “materially” different from other salmon – something agency scientists have said is true….

But apparently the FDA “not requiring” labelling is easily mistaken for “not permitting” labelling. See, for instance, this story from Raw Story: FDA won’t allow food to be labeled free of genetic modification: report. As far as I can tell, the Raw Story just gets it wrong. According to the Washington Post story (which Raw Story cites)…

The agency allows manufacturers to label their products as not genetically engineered as long as those labels are accurate and do not imply that the products are therefore more healthful.

Now, it’s true that the FDA doesn’t permit misleading forms of labelling. And so (for example) the Washington Post story points out that the FDA has reprimanded food companies that have been sloppy in their use of various sorts of “GM-Free” labels. But that’s only fair. I am strongly in favour of permitting clear and accurate voluntary labelling, but that labelling must be done in such a way that it actually informs consumers — all kinds of consumers — rather than confusing them further.