Two articles in the most recent (August 10) issue of The New England Journal of Medicine are very apropos. The first article–Dr. Adam Wolfberg’s Genes on the Web: Direct to Consumer Marketing of Genetic Testing–contains several references to DNA Direct, the company that sponsors this blog.

Direct to Consumer advertising (DTC) are fighting words to many physicians, due to pharmaceutical companies relentless use of the practice. By now we have all become accustomed to televised images of happy consumers who appear to be constantly on vacation and whose lives have apparently been transformed by prescription sleep aids, anti-depressants, allergy remedies, cholesterol drugs, and, of course the whole family of ED drugs.

The practice is objectionable (among other reasons) because it creates stresses in the doctor-patient relationship when a patient presents demanding the advertised drug and the doctor determines that it is either (1) not indicated or (2) presents no advantage over a lower-priced generic.

DTC genetic testing has to the best of my knowledge yet to be advertised on prime time television, but there are several companies, including DNA Direct, that offer these services through their Web sites.

Criticism of DTC genetic testing centers on questions of the adequacy of the genetic counseling that accompanies the tests and on privacy issues. Dr. Wolfberg writes:

…many clinicians are dubious about the quality of the genetic counseling , if any, that is provided by such companies. They question whether the counselors are appropriately trained and whether counseling conducted over the telephone is as effective as a face-to-face discussion.

In fact, there have been several studies involving the efficacy of on-line and telephone counseling for a variety of medical concerns, including medication compliance, diabetic management, weight management, and stress control to name but a few. In general, the results show that these are effective techniques, and often preferred by patients since they pose fewer logistic obstacles.

DNA Direct employs genetic counselors, all of whom are certified by The American Board of Genetic Counseling. Dr. Wolberg’s article refers specifically to one DNA Direct client who was referred by her physician because she did not want the results of the testing to become part of her record. The client, he writes, was “pleased with the telephone counseling…”

In the second article, DNA Testing, Banking, and Genetic Privacy, attorneys Patricia Roche and George Annas comment that “…using the Internet for the marketing and purchasing of genetic tests side-steps the doctor-patient relationship and eliminates meaningful face-to-face genetic counseling…”

Again, this seems to imply that other forms of genetic counseling are less “meaningful”, which is debatable. The Internet abounds with medical counseling resources and there is even a journal devoted to research in this area.

Roche and Annas’ major concerns are about the confidentiality of testing. They write,

…As long as personally identifiable DNA samples are stored, there is the possibility of unauthorized access to and use of genetic information–an invasion of genetic privacy…The best consumer advice, given current law, is that one should not send a DNA sample to anyone who does not guarantee to destroy it on completion of the specified test.”

DNA Direct’s standards include the statement that they “Ensure that lab partners either destroy samples or remove all identifying information following testing as allowed by state regulations.”

Roche and Annas conclude that “…we need a federal genetic privacy law to protect people what secrets their DNA contains, as well as those who don’t.”

This entry was posted on Wednesday, August 16th, 2006 at 2:00 pm and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.