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Ten years later, researchers led by the Boston University physician Robert Green reported the results of a study designed to find out how people actually would react to test results suggesting their risk of Alzheimer’s disease was considerably higher than average. The results are reassuring: People can handle the truth. The researchers gave APOE tests to 162 asymptomatic adult volunteers who each had a parent with Alzheimer’s disease. They randomly assigned the participants to either a group which was told their results or another that was not. The researchers monitored the participants for symptoms of anxiety and depression over the course of a year.
Not surprisingly, people who were told they tested negative for APOE4 felt relief. But those who tested positive experienced only transient distress, undergoing no more anxiety or depression than people in the nondisclosure group. “The disclosure of APOE genotyping results to adult children of patients with Alzheimer’s disease did not result in significant short-term psychological risks,” the study concluded. Another study reported that participants who learned that they carried the APOE4 allele were more likely to buy long-term care insurance.
What if other people find out my genetic secrets?
The chief reason that most people worry about genetic privacy is potential discrimination by insurers and employers. So what happens if someone receives my résumé and decides to pop over to Promethease to take a look at my gene scan information?
Among other things, they would find that I have a gene variant that some studies suggest can increase my risk of substance abuse (of both alcohol and “street” drugs) fourfold. To make matters worse, one of the gene variants that increases my risk of lung cancer is also associated with a higher risk of alcoholism. Then again, I don’t have a gene variant associated with strong alcohol cravings in some drinkers.
I confess that I enjoy a shot of single malt (OK, usually more than one) from time to time, and that dining out with me usually involves sharing more than one bottle of wine. We’ll leave my street drug history back in my 20s, when it occurred.
Might an employer decide, looking at my profile, that he doesn’t want to hire a possible drunk? For now, the Genetic Information Non-Discrimination Act (GINA), passed in 2008, prohibits employers from asking job applicants for genetic information or using it in making employment decisions. The federal government’s Equal Employment Opportunity Commission has ruled that the “acquisition [of genetic information] through commercially and publicly available documents like newspapers is permitted, as long as the employer is not searching those sources with the intent of finding genetic information.” So reading this article is OK, but seeking out data on Promethease is evidently prohibited.
At any rate, I would have no concerns about disclosing my genetic information even without GINA in the picture. The law is policy overkill, and it will turn out to be largely superfluous once most people realize that genetic information is not somehow special, toxic, or occult.
The biggest concern may be not the genetic analysis available now but what we figure out later. What if future research turns up genes associated with criminal behavior, for instance? I have two copies of the “warrior” version of the catechol-O-methyltransferase gene, which correlates with higher functioning in a crisis, possibly because it confers some protection against anxiety and pain susceptibility. The alternate “worrier” version of the same gene is associated with better memory and more focused attention, but individuals carrying it may crack under pressure. In addition, research published in the April 2010 issue of Neurology suggests that the warrior gene helps prevent cognitive decline as people age. Then again, some studies associate it with higher levels of aggression and greater risk of schizophrenia.
For the record, I haven’t been in a physical fight since the eighth grade and have not been arrested so far. And late-onset schizophrenia is quite rare. But right now, an employer naively using the results of my, or anyone else’s, genetic tests to make hiring and firing decisions is likely to be misled by the very preliminary information that gene screening currently makes available. It would be like deciding to pass over first baseman Albert Pujols if his gene scan indicated that he might have a slightly higher risk of alcoholism, or turning away physicist Richard Feynman because he had an SNP combination suggesting a tendency toward aggression.
After all, genes are not destiny, especially genes for relatively common complex traits and diseases. Even while having my share of hangovers, I have managed to support myself and more or less satisfy my employers since the age of 18.
What about kids?
In 2009 I asked Harvey Fineberg, the director of the Institute of Medicine, the health arm of the National Academy of Sciences, if there were any good reasons not to reveal your genetic information to the public. Fineberg replied that doing so might worry your children or embarrass them in front of their peers, if your genes hint at, say, a heightened risk of substance abuse or some medical debility.
In the age of cheap, easy genetic testing, checking your kid for deleterious genetic conditions that might be ameliorated by current treatments is the only responsible thing to do. But what about genetic testing for conditions that manifest only in adulthood, or for which there are no treatments? A 2009 survey in the journal Pediatrics found that “one third of parents are interested in predictive genetic testing for their children, even for disorders with no treatment.” One third were unsure, and one third said that they had no interest in it.
The Genetic Information Non-Discrimination Act does not ban parents from having their children’s DNA tested. The National Society of Genetic Counselors cautiously advises parents to include their children in decisions to test for adult-onset diseases and to think seriously about whether the decision to test should be reserved for the child to make upon reaching adulthood. Pathway Genomics currently will not test people who are under 18. 23andMe leaves the decision to parents, who can submit samples from children younger than 18.