Genetic Testing and Class

The March of Dimes, one of the leading national organizations promoting prenatal and infant care, issued a press release today blasting companies for marketing misleading genetic tests to parents.

“Buyer beware! These tests are marketed to new and expecting parents and take advantage of their dream of having the perfect baby," claims March of Dimes President Dr. Jennifer L. Howse. “Consumers should be extremely cautious before spending the money -- and risking their privacy -- on such tests.”

The March of Dimes held a luncheon entitled “Testing Your Personal Genome: What the Tests Can and Cannot Tell You” featuring a number of academics. The speakers agreed that despite the benefit of genetics tests- their ability to tell women they are carriers of genetic diseases that can be passed on to their children- direct-to-consumer tests are unregulated and “more for entertainment than useful medical information.” Oversimplified test results can make exaggerate some genetic warning signs, and inadequately others, giving parents misleading impressions of their infants’ health.

Direct to consumer anythings are obviously ripe for scams, from get rich quick schemes to super cheap fitness sets. The speakers pointed out the complications associated with genetic testing, such as a growing awareness of the impact environment has interacting with genetic predispositions to disease, but the more interesting takeaway is the growing market for “genetic tests”.

The technology to study a pre-born’s genetics is advancing rapidly, as we have noted and will continue to evaluate at this site. But as with any set of technologies, and as with any health service, access will come to certain classes of people before others. This time, however, we aren’t just talking about access to a nerdy “computer” or unfamiliar cancer screenings. Every parent will instantly recognize how dramatically their child’s genetic makeup will affect everything from their risk of disease to athletic potential.

As thorough, expensive tests conducted at top clinics begin to deliver mindblowing, yet reliable, results to affluent parents, other parents are going to want in. These parents will lack the financial resources to undergo the same premier testing, and will be vulnerable to "on the cheap" variations. "On the cheap" will still cost them though, and depending on what they are being promised, they could be throwing away money that they don't have. Credit card companies lick their lips at such situations. Finally, people in economically vulnerable positions are also more likely to be undereducated, and less aware of pitfalls, like what these companies will do with their childrens' genetic information.

Yes, marketers who will promise parents access to this info on the cheap will thrive in the coming years. Parents will trip over each other to hand over their cash and their children’s genetic information. March of Dimes says the practice is “unregulated.” How do people think such a practice should be regulated? Tomorrow I will post on some of the problems that have emerged in regulation, such as the limited role the FDA has played, though genetic tests falls under its jurisdiction.

You can read the full March of Dimes press release here: http://sev.prnewswire.com/health-care-hospitals/20090708/DC4348008072009-1.html