PLEASE NOTE: This post is a parody, and has two purposes: (1) simply for the sake of light-hearted fun; and (2) to provoke conversation with geneticists and researchers in this field (not that it will do so anyway!). So many of the recent studies about consumer reactions and/or guidelines for DTC testing have been released without any data at all, or have been studies involving a handful of test-takers. I believe that further studies are absolutely vital, but they should be an in-depth analysis rather than the curt and superficial write-ups that have been done to date. Rather than contribute to solving issues related to DTC testing, these incomplete studies add to the confusion surrounding the field.
So, ASHG geneticists, if you can see the humor in things and are willing to accept challenges to your way of thinking, read the post below! Otherwise, click here: http://www.ashg.org.
THE ORIGINAL POST:
I received this news release yesterday via email. I’m probably breaking the embargo by publishing this, but I think it’s too important not to get it out there. Please be sure to read ALL the way to the bottom.
Nation’s Top Geneticists and Ethicists Release New Study of Consumer Perceptions of Direct-to-Consumer Genetic Testing and Announce New DTC Testing Guidelines
Leading up to the American Society of Human Genetics 60th Annual Meeting, which will be held November 2-6, 2010 in Washington, D.C., a group of the nation’s top geneticists and ethicists today released the results of a new study analyzing the public’s awareness and use of so-called “direct-to-consumer” genetic testing by companies such as 23andMe, deCODEme, and Pathway Genomics.
The researchers, funded in large part by federal grants, interviewed over 10 people randomly chosen at the entrance to the nearest grocery store and asked them whether they were familiar with one or more of the five DTC genetic testing companies included in the study. The participants were then asked if they had participated in DTC genetic testing, and whether they might be interested in doing so in the future. The participants were also asked whether they believed that members of the general public should be allowed to access their own genetic data without the assistance of a physician or genetic counselor. Finally, to gauge the participant’s understanding of the basic principles of genetics, each was asked to briefly describe in 100 words or less the role of the replication fork in DNA replication.
The results of the study indicate that 100% of the study participants were completely unfamiliar with these DTC testing companies, and none had any experience with DTC testing. The study also showed that while none were currently interested in performing testing on their own DNA, 90% believed that Americans should be allowed to access their genetic data without the assistance of a physician or genetic counselor. The results also showed that none of the participants in the study were able to competently explain even the basics of the DNA replication fork.
“Our study shows for the first time that the vast majority of the American public is completely unaware of even the most popular DTC testing companies,” reported Dr. David N. Anderssen, lead geneticist in the study. “Additionally, the inability of every single one of the study participants to explain one of the most basic aspects of genetics was, quite frankly, very disappointing, again suggesting that people are not equipped to handle genetic information.”
“While 90% of the participants stated that they should be able to access their own genetic information without a physician or geneticist’s assistance, we completely disagree with their opinions and took this opportunity to explain to each one of them just how dangerous their genetic information can be.”
In light of the findings, Dr. Anderssen noted the group’s newly-issued guidelines on DTC testing: “We’re recommending that all DTC genetic testing companies immediately close up shop, or, alternatively, hire a staff of 25 or more genetic counselors. We also recommend that Congress immediately make it illegal to look at an ‘A,’ ‘T,’ ‘G,’ or ‘C’ without a physician or genetic counselor within at least 5 feet; the danger of privacy violations and/or the misunderstanding DTC genetic testing results is just too great to ignore.”
“Indeed, the majority of the group believes that there is no role for genetics in health care, disease risk, genealogy, or anthropology, among other endeavors; the old-fashioned – but always informative – family history is really the only way to go here,” reported the geneticist. “However, since most of us need these jobs, we decided to approve the use of genetics for disease assessment in the new guidelines.”
Dr. Anderssen noted that the group is continuing to study this emerging area of genetics, and plans to expand the study to 25 more participants from the nearby gas station in the near future.