For some people, genetic testing may reveal their likelihood of developing a disease that they can do little to prevent, the Guardian reports.
As part of a medical trial, Amy Burton learned that she had pre-type 1 diabetes and would likely develop the full-blown disease, which her sister already has. She's begun exercising more and watching her weight, though her doctors are unsure that any lifestyle changes will delay disease onset. "It's like being told you're going to be involved in a car crash, but you don't know when it will hit. You know it is going to happen but you can't do anything about it," Burton tells the Guardian.
Other times, testing has implications for family members. Alison Dagul underwent BRCA testing after being diagnosed with both breast and ovarian cancer to find that she and her daughter were both carriers. Dagul's daughter is pursuing a double mastectomy and plans to have her ovaries removed after having children.'"It is heartbreaking she has to do this, but as least she can avoid what I am going through," Dagul says.
The increasing availability of over-the-counter genetic testing — direct-to-consumer genetic testing firm 23andMe has some 1.2 million customers around the world — worries some clinicians, the Guardian adds, as there isn't always a counselor available to support customers.
But 23andMe cites recent studies that have found people who unexpectedly test positive for BRCA1 or BRCA2 gene mutations only occasionally reported moderate anxiety and none reported extreme anxiety.
"While we don't see a large uptake of genomic screening happening anytime soon in the UK, concerns around the potential mental health fallout is exactly why people have to think very carefully about taking a genetic test to understand, before they do so, the consequences of the result," Nick Meade, director of policy at Genetic Alliance UK, says.