Focus Groups Share Thoughts on Direct-To-Consumer Genetic Tests
May 11, 2012

Focus Groups Share Thoughts on Direct-To-Consumer Genetic Tests

Connie K. Ho for

Researchers at Loyola University Chicago´s Stritch School of Medicine have found that patients see both benefits and risks from direct-to-consumer genetic tests. Dr. Katherine Wasson, a specialist on the ethics of direct-to-consumer genetic tests, and colleagues conducted the experiment. The study, published in the American Journal of Bioethics Primary Research, showed that the patients were concerned about the end game of the genetic test results.

There are a few companies, such as 23andMe, deCODE Genetics and Navigenics, that currently test consumers for single gene disorders like cystic fibrosis; complex disorders with multiple genes like cancer, heart disease, and diabetes; traits like hair color, eye color, and baldness; as well as allergies to drugs like Coumadin for a fee ranging from $100 to $1,500. Normally, consumers can order these tests directly and receive the exams without having to go through a health-care professional like a geneticist or a genetic counselor.

In the study, the researchers conducted four focus groups with 29 participants who were primary care patients at Loyola University Medical Center. After they received information about the direct-to-consumer genetic testing, they were to give their opinions on the exams. The focus groups lasted about an hour and a half to two hours, with much of the answers being recorded and transcribed. Following the focus groups, researchers read and analyzed transcripts of the sessions and looked for themes that came out from the data.

Even though direct-to-consumer genetic tests weren´t covered under insurance, many of the participants were willing to pay the $10 to $20 price and a few of them were willing to pay up to $100 to $400.

“This situation could exacerbate inequalities in the health-care 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,” noted the researchers in the report.

Participants in the focus groups also stated that they were interested in having their children tested, including those who were adopted or were from foster homes. They believed that the tests would provide useful information for the future. However, this perspective is not shared by medical professionals who recommend that children should only be tested if there´s a disease to be investigated; otherwise, children should wait until they are adults to be tested.

“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,” explained the researchers in the article.

The researchers also found that there were four main reasons participants were involved in the study. In particular, they hoped to gain more information, seek prevention, seek intervention, and to help others. They also mentioned concerns about testing, including questions regarding the accuracy of the tests, the interpretation of the exams, the ethical issues raised with the tests, as well as the ability to share the testing information with consumers´ physicians.

“I do have a strong family history of cancer, diabetes and my own personal history of cancer, so just to know down the line if it can come back or if something else could occur or if I could pass it on to my kids, I would like to know that," remarked one participant in the experiment.