DNA testing is no longer strictly the realm of scientists and detectives. For less than $400, consumers can now directly purchase their own personalized genetic information.
But according to Dr. Lynn Rew of the UT School of Nursing, consumers are not ready for this type of access to their genetic information. In a presentation given Friday at the nursing school, Dr. Rew and Dr. Michael Mackert of the School of Advertising told an audience of nursing students and medical professionals that consumers are ill-equipped when it comes to obtaining and understanding information about the human genome and how it relates to their health.
Rew said this type of personal DNA testing is “not regulated and it’s done outside the protective arena of a medical supervisor.”
According to the Rew and Mackert, low “health literacy” – people’s ability to obtain, process and act on health information – leads to more emergency room visits, medication errors and poorer health outcomes overall. They said consumers need a solid base of health knowledge to be able to understand and apply newly available personalized genetic information.
“We need to have a certain amount of literacy about [genomics] to know: can we trust these findings? Is somebody doing something with my genetic material that I don’t know about?” Rew said.
For less than $400, personal genetic testing company 23andMe will collect your saliva sample, obtain your genotype and create an online account that will allow you to explore your genome and ancestry, including the probability you will develop certain diseases.
Linda Avey, co-founder of 23andMe, told NPR’s Diane Rehm last year that her company’s first goal is to educate people about the basics of genetics.
“This whole notion of personalized medicine is something that we all hope and dream about but it’s really quite a long ways off,” Avey said.
Rachel Nagler, spokesman for the company, said genetic samples are generally destroyed two weeks after data is reported to the customer, but that in certain cases clients are given the option to have their genetic information frozen for future use.
Rew said the Genetic Information Nondiscrimination Act, passed in 2008, should protect consumers’ private data on pre-existing conditions or predisposition to diseases from being used by insurance companies and employers. But she wants to see stronger regulatory measures imposed on this new industry.
Additionally, Rew said some people have reported purchasing reports from several testing companies only to receive different information on each report.
She said part of this has to do with the fact that none of these companies are regulated. Since the reports give only the probability of developing a certain disease, Rew said it is difficult to know how accurate the estimate is.
Nagler of 23andMe said test results could change as new medical information becomes available.
Rew and Mackert want to make sure consumers really do understand this, and that they are able to appropriately interpret the information they receive. For example, Rew said approximately 19 percent of the population is expected to develop Alzheimer’s disease, for which there is currently no cure.
Mackert and Rew stressed the need for holistic health education beginning at the elementary school level, and applauded medical-themed television programs for integrating valuable information on diseases and testing procedures into story lines.
Rew recommended that those with little knowledge of genomics explore the “Genetics 101” section of www.23andme.com for an animated introduction to the science of genes.
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