Genetic Tests: Companies Selling the Test Directly to Consumers
Would you like to be tested for the GRK3 gene to know if you might get a bipolar psychiatric disorder? This gene variant at best is present in 15% of patients with bipolar disorder and 5% of all patients who do not have bipolar disorder. Psynomics advertises that for $399 they will test a sample of your saliva for the gene and then send a 6 page report to your doctor. How about any woman watching or reading the ad from Myriad Genetics, even if she had no family history, would she desire to spend $3,100 testing for the BRCA1 and BRCA2 hereditary breast and ovary cancer genes where less than 1% of the general public carry these genes and when, if present, carries a 50% to 85% lifetime risk of breast cancer and a 15% to 60% lifetime risk of ovarian cancer? (Notice that the risk estimates are rather wide.) And for the BRCA, the company will perform the genetic counseling to the woman. There is much controversy still about the ethics and value of direct to consumer (DTC) drug advertising which is monitored by the U.S. Food and Drug administration. Now here comes genetic testing offered by direct to consumer advertising where there is no governmental monitoring. And then, what is the personal and social implications of such advertised random testing? This entire subject and more is presented in the June 2008 issue of The American Journal of Bioethics which is not web accessible without subscription, but one of the authors, ethicist Arthur L. Caplan, presents his view of the BRCA cancer gene testing sales pitch on Bioethics.net.
The title of physician ethicist Howard Brody’s editorial in the Journal sets the context that the genetic testing companies are following the pharmaceutical companies’ line to promote their product “Ask Your Doctor If This Genetic Test is Right For You”
But that’s the point, most doctors are not specialists in genetics and not able to make a decision at this stage of knowledge what are the benefits vs the risks of performing genetic tests on healthy people, particularly the young. They also are not skilled in genetic counseling of their patients regarding the value or the interpretation of the results of the tests. So then it becomes the responsibility of the individual with the “help” of the gene testing company to decide whether the results are worth the costs, the emotional consequences, unnecessary medical procedures and treatments, the implication for families and the impact of disclosure of the results of the testing on the individual’s insurance and job.
If genetic testing companies find that broadcasting direct to consumer advertising is simply their right to freedom of speech (and make some money) and ignore the ethical and social consequences of what they are doing, they should be held accountable for the negative consequences and not shift the responsibilities to anyone else including the physicians of those readers and viewers to whom they advertise. ..Maurice.