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Spend, swab, send-within days, you can unlock secrets of your ancestry, your susceptibility to certain diseases and the probability that your future children will have your eye colour.
All through the use of a user-friendly DNA search engine. While the new industry growing around genetic testing may be entertaining and more convenient than, say, heading to the doctor's office for a series of time consuming tests, experts say the results of such services may not be medically helpful to customers.
This holiday season, a company called Decode Genetics released the first of a unique line of gifts to offer your loved ones: a personalized genetic breakdown. Released in mid-December, their services offer do-it-yourself genetic testing for $985 USD. Customers receive a testing kit in the mail, complete it and send it back to the company base in Iceland. The results are posted in the online DecodeMe database and users can then browse their own genome for genetic interest.
Decode Genetics is not the only company to cash in on consumers' interest in their genetic makeup. Other companies, such as California-based 23andMe, also began offering services of the same kind in November of 2007. Personal genomics companies such as these are on the rise likely because of our current, medically-inclined consumer climate and recently available DNA and online technologies.
"The mission of 23andMe is to give people access to their genetic information and then enable them to participate in research studies that are of interest to them. We did this now because of the convergence of the scale and lowered cost of genotyping technology, Web 2.0 capabilities and the advent of information sharing via social networks," says Linda Avey, the cofounder of 23andMe.
While genetic testing can offer valuable insights into predispositions for various diseases, among other things, it has also left some experts concerned about the lack of both doctor-patient discussion and formal regulations regarding the quality of the tests and information.
What the tests won't tell you
Avey and her business partner Anne Wojcicki started 23andMe as a new research model with the goal of moving towards more personalized genetic medicine. Avey maintains that all medicine should be specific to the genetic composition of the person who is being treated. While this is not currently possible, her Web site describes what the beginning stages of this medical advancement would be. What the genome test will tell consumers is what tendencies they have toward certain activities, who their ancestors might be and what colour eyes or hair their children may have. What the tests won't reveal are more serious things, like a person's tendency towards rare genetic diseases.
"The kinds of variants that they are looking for [in the DNA] are the common disease variants. Things like exactly what allele you might have if you have cystic fibrosis are not on their chip," explains Dr. Roberta Palmour, professor of genetic psychiatry at McGill University.
While not all of the currently available variants convey valuable genetic information, there are some that do. For example, the BRC1 gene corresponds to the development of breast cancer and is identified by tests offered by these companies.
"There are, again, many different alleles [gene variants] at that locus but there are some relatively common ones," Palmour says. She expresses concern at the inclusion of these factors in online tests where there is no intervening expert to explain the information to patients.
While the companies' Web sites identify risk factors in their services, perhaps the most daunting aspect for customers is the ominous chance that they could discover a fatal genetic condition and not know how to deal with it. Avey, however, insists that 23andMe has a corporate responsibility to clearly explain to consumers what their test results mean.
"It is the role of 23andMe to interpret genetic information for our customers and make it accessible and understandable. We will continue to develop our educational content for general genetic understanding as well as personalized interpretation based on our customers' genetic profiles," she says. Getting these test results without contacting a doctor puts people more in charge of their own healthcare. However, paranoia and misunderstanding remain major risks in such a process.
Is it worth it?
In short, the tests remain a novelty for anyone with deep pockets. However, they have a large potential to decrease in costs and become more available to the general public.
"At this point [these tests that are advertised to consumers] are probably quite useless. They put a focus on the assumption that genes are responsible," says Abby Lippman, professor of Epidemiology at McGill. "Genes don't cause anything. That's an old idea from the 1980s and 90s. We are much more than a package of DNA. Emphasis on genes is misguided."
It is important to note that one risk factor cannot be the sole cause for any condition, but, rather, exists in a larger mix of causes. Experts also express reservations about the meanings of the results themselves.
"None of [the services or tests are] regulated by any governing body. There is no evidence of what any of this will mean or that having these results will make any difference," Lippman says.
There is little evidence regarding the importance of those risk factors in question. There are also few statistics on false positives and negatives in the tests, which means that even when risk factors are identified, they may not make a difference.
While the identification of risk factors may not directly play any great role in diagnosis or in improving any condition, they may prove valuable in convincing people to undergo lifestyle changes that suit them. Though these tests are not cut and dry, in theory, they can help people on a basic level.
"If people were to act upon the information that they got from this by living a healthier life for their own genotype then that'd be great. Some of the things that would result in a healthier life for almost any genotype are known to us right now and people either do or don't do them. There can be benefits but I think there are also risks," says Palmour.
A new type of medicine
Palmour asserts that these tests are just another way to convince people to do things to improve their health. She also suggests that such instances of individual genetic testing are bringing us to a new frontier of medical care that blends nature and nurture in order to help maximize health benefits.
"What really is important is the interaction between the gene and the environment. I think one of the things that we need to be learning a great deal more about than we are learning about right now is how to tailor environments to maximize whatever your genetic fitness might happen to be," Palmour says.
Science aside, these companies seem to be happy with their revenues. Though these tests may not be medically helpful, they certainly carry some level of entertainment value, as well as run with the general North American trend of taking one's health into one's own hands. However, until the tests provide more scientifically accurate evidence and more information is released about the industry's regulations, personalized, doctor-free gene testing may just be a novelty service.
Or, perhaps, someday there'll be a "My Genome" application on Facebook.
Viewing Comments 1 - 1 of 1
alan
posted 1/09/08 @ 10:28 PM EST
"Genes don't cause anything"? I thought skin pigmentation, sex, eye color and some diseases like Huntington's, MD and spina bifida were caused by genes. (Continued…)
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