More than a dozen companies deCODE Genetics and Navigenics, test consumers’ genomes for single-gene disorders such as cystic fibrosis; for risks of developing complex disorders involving multiple genes, such as cancer, heart disease and diabetes; for sensitivities to drugs such as Coumadin; and for traits such as hair colour, eye colour and baldness. Costs range from roughly 100 to 1,500 Dollars. Consumers can order these tests directly and receive results without the involvement of a qualified health-care professional, such as a geneticist or genetic counsellor.
Wasson and colleagues conducted four focus groups with a total of 29 adult primary-care patients recruited from the waiting rooms of Loyola University Medical Centre. After hearing an overview of direct-to-consumer genetic testing, participants were asked their thoughts and opinions. Each focus group lasted 1½ to 2 hours. Sessions were recorded and transcribed verbatim. Researchers read and analyzed the transcripts line-by-line and word-by-word for themes that emerged from the data.
Direct-to-consumer genetic tests are not covered by insurance companies. Many participants were willing to pay in the 10 to 20 Dollars range (the equivalent of a co-pay). A few were willing to pay 100 to 400 Dollars. “This situation could exacerbate inequalities in the healthcare system, with those having greater financial resources being able to access this elective health-related information while those with fewer resources are unable to pay for it,” says Doctor Katherine Wasson.
Participants generally expressed willingness to test their children, including adopted and foster children. They said testing for disease risks would provide helpful information for the future. But these views are contrary to professional and ethical guidelines, which recommend testing children only if there is an effective intervention for the disease that is being tested. Otherwise, the children should wait until adulthood and decide for themselves.
“Children could be tested without understanding its implications, and parents might take actions that are inappropriate and potentially harmful, based on results without consulting a qualified health professional,” Wassan says.
MEDICA.de; Source: Loyola University Chicago