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Hoping to find any disease susceptibilities lurking in her genes , 21 - yr - older Lee — who goes by the cognomen " Zlyoga " on YouTube — spit into a container andposted a video of her salivary sampling on the popular web site in December 2008 .
" I believe this is the coolheaded thing in the intact universe , " she giddily pronounce to the camera . " This is one of the best giftsI ever received — so much proficient than the bike I was go ask for . "
Lee ’s parent had given her a ring mail - in familial test . She completed the forms in the kit — then priced at a few hundred buck — from California genetic - testing company 23andMe , enclosed the sample of her saliva , and commit it on its way .
aim - to - consumer genetical testshave become increasingly popular since they first impinge on the grocery store several twelvemonth ago — in fact , 23andMe alone boasts of having more than 50,000 customers . Although the company does not free statistics about its actual growth , a spokewoman told MyHealthNewsDaily that " our database has grown steady . "
But there ’s been much debate over whether hump the results is good or harmful — and if they even give an precise picture of a somebody ’s jeopardy for certain disease . [ Related:7 Diseases you could Learn About from a Genetic Test ]
Not the whole picture
When Lee received her results , she lease to YouTube once again : " In some ways , reading the results feel like a horoscope , " she say , sound half - satisfied .
The run revealed she indeed has gentle centre and , like both of her parents , has a blue - tolerance forstatin drug , which are used to treat people with in high spirits cholesterol level . However , she was surprised to learn a few diseases that run in her familyposed lilliputian to no risk of infection for her .
" I do it [ genic testing ] is still in its infancy , but how do I know any of this legitimate ? " she said .
Others who have completed the 23andMe test have expressed like concerns on YouTube : " It ’s all so vague ; what does [ higher risk ] even mean ? " postulate " MelissaMich , " after receive her 23andMe results .
Not only may the results seem vague , they are just a snapshot of someone ’s transmitted makeup , called undivided - base polymorphisms ( or SNPs ) .
" opine that the genome is a huge jigsaw teaser , with many more part than we have ever seen in a mystifier before , " said Dr. Andras Pellionisz , founder of HolGenTech , a genome reading software company . " Now , presuppose someone gives you only 10 percent of the piece . "
By knowing your SNP , you may " get lucky " and just learn your risk of some diseases , said Pellioniaz , who mean the tests are a well idea . But , he said , the hereditary picture is uncomplete .
For good example , the results do n’t factor in lifestyle selection . A person might be secern he has a low risk of developing lung malignant neoplastic disease , but if hesmokes two packs a 24-hour interval , his chances of getting the disease increase .
Indeed , 23andMe is upfront about this on its website , stating that it provides genetic information and " not the chronological sequence of your total genome , " nor does it execute predictive or diagnostic tests . The company acknowledges SNP information is difficult to translate .
The doubt factor
UCLA sociology professor Stefan Timmermans , who read the genetic testing of newborns , say that roll in the hay too much puts accent on those who ’ve taken the trial . In a recent subject area , Timmermans revealed how the freshly mandated genetic screening of newborn infant for uncommon diseases is create unexpected upheaval for familieswhose infant test positivistic for danger factors but show no prompt signs of any diseases .
" Although newborn viewing undoubtedly save lives , some families are thrown on a journey of keen dubiousness , " Timmermans articulate . " Rather than providing clean - cut diagnoses , screening of an intact population has produce ambiguity about whether infants truly have a disease — and even what the disease is . "
" Basically you ’re telling families of a new-sprung , ' Congratulations , but your child may have a rare genetic consideration . We just do n’t know , and we do n’t know when we ’ll know , ' " Timmermans said .
His study paint a picture of families catch in limbo as they wait month for conclusive evidence that their children are out of the woods for various condition . In many type , however , the test termination never derive , the subject field found . Instead , the fry lento outgrow their known risk agent for dozens of metabolic , hormone or blood experimental condition But the effects loiter .
" Years after , everything look to be fine , parents are still very disturbed , " Timmermans articulate .
Some families are so traumatized that they conform to unwarranted and complicated treatment regimens , including waking their children up in the middle of the night , enforcing restrictive diet and limiting their contact lens with other people for year .
And the same lasting worries come with direct - to - consumer testing , Timmermans told MyHealthNewsDaily .
" Those type of test are planting cum in citizenry ’s mind for something there is n’t a lot of firm information about . The genetic data provided by direct - to - consumer test by itself is n’t enough ; they also have to calculate at crime syndicate history and what has really developed . "
Understanding the results
Mike Spear , a 56 - year - older communicating director from Calgary , Alberta , did n’t love exactly what to make of his results . He found he had a eminent risk of exposure ofage - related macular devolution , which causes visual modality passing in old age , and became very concerned .
" When I saw my result on paper , it seemed impossible to distance myself from the fact that it was just an experimentation , " said Spear , who works for Genome Alberta , a not - for - profit genetics inquiry funding establishment .
Spear contacted a genetic counselor to gain more sixth sense into the results ' meaning .
" The counselor explained that just because I ’m at risk for certain conditions , it does n’t mean it ’s last to turn into anything , " Spear told MyHealthNewsDaily . " I also started to be proactive and go to the eye medico more . "
The company 23andMe offer up counselling armed service and gives customers access to its on-line biotic community , where people can chat about their results , for an additional fee .
But not everyone who participates in the tests reaches out to hereditary advocate who can help explain the results , say Dr. Christopher Tsai , manager of clinical information science of Generation Health , a genetic - testing benefits business firm . And this is another place problems rise .
Further interpretation
The rendering of the result is an increasingly central challenge to genetic examination , Tsai said , and the power to canvas the genome has outpace the power to interpret the results .
" Even trained geneticists take issue on how answer should be interpreted and used to manoeuvre guardianship , " Tsai said . " The results can for certain be empowering if they guide to concrete actions that the patient can take . Even in terminus of modus vivendi , there is some grounds that genetic science charm multitude ’s reception to diet and exercise , and this entropy can head their life style changes . "
harmonise to a 2009 study conducted by the National Institutes of Health , about 78 percent of answerer said they would change their diet and exercise habits if their results bear witness a high peril of cardiovascular disease .
However , some diagnosis seem to only add bad news , Tsai monish .
For model , a test can prognosticate if someone will modernise Huntington ’s disease — a devastating neurologic condition with no therapeutic . It ’s coarse for people to modernize depression when given such results .
" Understanding the value of genetic tests , and when [ and ] where to use them in the health care system , is becoming an increasing focus of the wellness precaution industry , " Tsai aver .
FDA crackdown
It is for this reason theFood and Drug Administration is increasingly scrutinizingdirect - to - consumer genetic - examination companies , Tsai said .
critic of the tests worry about the safety of consumers who free-base important lifestyle or medical conclusion on inaccurate or misunderstood test results .
" The peril is what people may do in answer to the tests — some may suffer psychological damage or feel dread about their succeeding wellness peril , " said Barbara J. Evans , co - manager of the Health Law & Policy Institute at the University of Houston Law Center .
" People sometimes pursue badly - advise aesculapian treatment that may in reality stimulate them harm . They may be incognizant that these tests can farm pretended positives and false negative , and even when mass do have a’bad ' genethat does not needs involve that the gene will ultimately make them sick . People ’s futures depend on many , many factors other than their genes , " Evans said .
Evans enjoin the answer will need studies to be done before tests enter the food market , and ongoing evaluations to see how well they execute once they are in use .
About 90 percent of genetic tests useable in the United States have never been through a regulatory review of how safe they are or how much they improve wellness , she said . Most expert fit in such review is call for , but solutions have been bog down in the controversies surrounding the tests .
There are hardheaded roadblock to forcing all genetic trial to undergo the same form ofreview the FDA requiresfor other aesculapian products , such as drugs . The obstacles include lack of data , the curt commercial-grade lives of test products and the trouble of tax products that make long - term predictions .
Evans said urinate genetical tests as safe and effective as they can be will command close coordination among the FDA , state bureau , professional groups and other secret - sector overseer .
" Resolving the tarry stranger about genetic tests will require more data point , and getting more data point will call for a dedication of resources , " Evans say . " And make no error , having good data about genetical tests will only improve the public ’s wellness if the information are pass along in a seasonable and understandable way to the public . "
