Few Worries About Genetic Testing

A common refrain for critics of direct to consumer genetic testing is that the tests could cause unnecessary worry.

Those critics believe that for some tests the results shouldn’t go directly to a consumer and instead be delivered by a doctor or genetic counselor. We believe that a person shouldn’t have to go through someone else to access their own genetic information, if they want it.

At a conference earlier this month in Boston, social scientist Cinnamon Bloss, Ph.D. talked specifically about whether these tests induce fear. Several studies indicate they don’t. “A major concern raised regarding these tests is the possibility they will lead to high levels of anxiety in consumers who receive estimates of high genetic risk,” said Bloss, last year after one of those studies was published. “But our data suggest this is not the case.”

Bloss, from the Scripps Translational Science Institute, spoke at the Fourth Annual Consumer Genetics Conference about studies the institute did that showed that few consumers reported heightened anxiety from the tests. While not many people in the Scripps’ study said the tests resulted in a change in their diet or exercise, about a third of those tested shared their information with a doctor within a year and a majority said they found the information useful.

Earlier this month we gave a much-warranted nod to Holly Dunsworth, who wrote about the tendency in some coverage of genetics to play on people’s fear instead of illuminate issues.

There have been several studies into this very issue, and, so far, all have agreed that people can handle the truth about their genetics. They also want to know. Fear, or more accurately the potential anxiety surrounding the results of a genetics test, is an issue that can actually be studied. The studies done so far agree that genetic testing doesn’t induce high levels of fear and anxiety in those who choose to get tested.

  • Tom

    I do not know the veracity or accuracy of the Scripps study but I do know these things.

    I have communicated thru email with several people on the 23andme site that had anxiety and fear after receiving their genetic results and still do. I also know that they have changed their diet and lifestyles due to the information they received. I also know that they have discussed the results with their Dr.’s as well in some cases. The concept of having a Dr. order and receive the genetic test and tell the results to some people may or may not be best as that would depend on the person involved. It would raise the costs most likely due to the Dr. charges and delay the time to receive the results due to his appointment schedule. If the Dr. keeps the results from the patient that is another issue as well. Then, there is the issue that the Dr. does not or may not have a site like 23andme where people can discuss the issues of the genetic test results and learn things that the Dr. may not know or express or explain to the patient. It would also hinder the type of research that 23andme is doing with permission from the people on their site with their genetic data. The Dr. is not going to do this type of research in most cases or possible any cases and therefore the information will just be in a file in his office gathering dust unless he sells or gives the information to a 23andme type company with the patient approval. You could also have Dr.s selling the information without patient approval and committing a crime just as some due with illegal billing of medicare charges or illegal drug prescriptions,etc. The bottom line is with this 23andme service provided I know of several people that have changed their lives and lifestyles and in so doing may prevent certain diseases or delay the onset of certain diseases. In some cases they may have just saved their lives with the information that they received. They would not have had the knowledge to do so without this service and would not have asked for a genetic test at their Dr.s office is my best position on this matter.

    • ScottH

      Thank you for your comments. We think the Scripps’ studies are indeed strong and grounded in hard science. The studies are also not based on anecdotes but on peer-reviewed research. As for your other points, there are protections in place to protect the privacy of your health records. And there are laws, specifically May 2008 Genetic Information Nondiscrimination Act (GINA), to protect against genetic discrimination.

  • Darlene Brayton

    Can any of the information provided by 23&me when shared with a physician be of a negative impact in respect to my insurance coverage?

    • ScottH

      Although confirmed cases of genetic discrimination are thankfully rare, the fear of discrimination by insurance companies is one of the main reasons people hesitate to pursue access to their genetic information. We want you to understand the laws that protect you, as well as their limitations.

      With the May 2008 signing of the Genetic Information Nondiscrimination Act (GINA) by President Bush (the law took effect in stages over 2009) Americans are protected against discrimination based on genetic information – at least with regard to employment and health insurance coverage. GINA does not extend to genetic information-based discrimination in life or long-term care insurance. And until the law is tested in court it is difficult to know how far its protections will extend in practice.

      Most states also have their own statutes prohibiting or at least limiting genetic discrimination. In California, for example, individual and group insurers are prohibited from requiring an individual to provide genetic information, from using genetic information to decide eligibility or risk status, and from disclosing such information without consent. The National Conference of State Legislatures provides useful tables that detail laws pertaining to the protection of genetic information in all 50 states.

      In addition to legal protections, many insurers, such as Aetna, are developing specific guidelines about the use of genetic information.

  • Cari

    We had no fear to speak of. The shred of anxiety we had was nothing compared to going around in circles as doctors have no info other than foggy symptoms to go on.

    Knowing our genes will be as common as knowing our blood type. We will all get used to it and it will be second nature like other things “The experts” once feared. No one thinks twice about the grave ramifications of knowing the earth revolves around the sun, yet that info was at one time feared tremendously. What if the people knew? Why their whole idea of God would be shattered!

    Nothing can stop the whole idea of genetic testing now and most people will say, Bring it On.

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  • Kaela Creighton

    But what doctor would spend hours going through the data like I have? I’ve learned so much about genetics, moving past my upside associations that I made in the beginning. The doctors would just tell me I have a higher risk of Alzheimer’s, which, from family history, I already know. I feel vain going through all of this information though. It’s like looking in the mirror for hours.

  • S Seymour

    I bravely took the standard saliva test done, to the derision and disapproval of my six siblings.

    Now I know far more about the family than they do. Haven’t show them. Might not for awhile because of their hostility.

    Worse, many doctors are ignorant about 23andme.com

    For example, two GPs I spoke to yesterday in their New Jersey offices said they knew nothing about 23andme.com, and I was disappointed when I couldn’t show them my results on my laptop because there wasn’t wifi or internet access at their offices. In addition, they didn’t bother to tell me the results of a simple stool sample from four months ago until I pushed them yesterday, had to call about it, and didn’t have the results at their fingertips. There’s a word for them all…Luddites!