When it comes to genetics, the scary fact is that the not-too-distant future isn’t that distant at all. The reality is that a maelstrom of activity is brewing underground with biotech companies drooling at the prospects of genetic marketing and bioethicists bioethicizing at an unprecedented rate.
But what does this all mean for you? Well, with every waking day the prospect of individualized genetic testing is slowly becoming commonplace. But as with any new technology, certain questions about genetic testing are apparent: What kinds of tests are available? Where can I get them? How accurate are they? And what are the costs?
Get all your genetic testing questions answered here…
Predictive testingLike a Gypsy fortune teller with a medical degree, predictive testing does as you might expect: It predicts your future risk of developing disease. Generally, predictive tests fall into two categories: susceptibility tests and presymptomatic tests. Susceptibility tests, also known as predispositional tests, determine your risk of developing a particular disease (like cancer) relative to the general population. A presymptomatic test, however, tells you for certain if you will develop a disease (or show symptoms of disease) later on in your adult life. Presymptomatic testing is routinely performed among healthy relatives when a family member is identified with a genetic disorder, such as hemochromatosis.
While the public availability of predictive tests may not be immediately apparent, rest assured that finding such tests in the near future will be like stumbling across porn online. GeneTests.org, a U.S. government-funded organization, currently maintains an online database of international laboratories and clinics providing genetic testing — and that database is huge. So, while most forms of genetic testing will undoubtedly proceed under the guidance of health-care professionals, conflict arises when individuals seek testing outside of the health-care system: enter direct-to-consumer (DTC) testing.
DTC testing opens a Pandora’s box of controversy regarding regulation as many of these tests, particularly predictive tests, can be purchased directly online. Numerous biotech companies have thus flung themselves into the fray offering a whole whack of genetic tests with little validity as backup, but with a whole lot of marketing ingenuity. A 2006 report by the U.S. Government Accountability Office recently examined various predictive tests available from four online websites and concluded that tests grossly misled consumers: The results were highly ambiguous, not scientifically proven, and the recommended treatment options were overly expensive.
Whether insurance companies will cover the excessive costs of genetic testing — ranging anywhere from $200 to $3,000 depending on the test (and between $295 and $1,200 for most DTC tests) — is an entirely different matter. But you can bet that private insurance firms will be stricter than a postmenopausal librarian, offering funding only if stringent eligibility criteria are met, like if there exists a strong familial linkage to a presymptomatic disease. Even in countries with universal health care, funding will only be offered for those tests that have shown consistent accuracy, and often years of population research are required to confirm this. So for those hypochondriacs out there, prematurely knowing what may or may not ail you might just break the bank. However, a resourceful hypochondriac might just try enrolling in a research study where genetic testing may be offered for free.
Other things you need to know about genetic testing…