Leading Expert Warns about Ethics of Consumer DNA Testing

Direct-to-Consumer Companies Provide Less Accurate Genetic Testing Results

August 17, 2018
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Jamie Epstein 
646-565-6178 
jamie.epstein6@touro.edu

Strand of DNA
Strand of DNA

(New York, NY) -- Leading bioethics expert, John D. Loike, Ph.D., professor of biology at Touro College, published an editorial in The Scientist warning about the ethical dangers of direct-to-consumer DNA testing. While learning about ancestry through DNA does not pose an ethical problem, using DNA testing to inform consumers of their risks of diseases and genetic syndromes treads into dangerous unethical territory.

One of the greatest risks, he writes, is that many of the tests lack scientific validity to support the genetic outcomes revealed to customers, and some labs do not have proper certification. This can lead to both false reassurances and unnecessary alarm. For example, a popular company assesses for BRCA mutations, which are associated with an increased risk of breast cancer. Yet, it only tests for three of the most common BRCA mutations. “There are almost 1,000 BRCA mutations that need to be assayed to provide an accurate assessment,” writes Loike, a leading expert on the ethics of stem cells, cloning, bioterrorism and the interface of science and religion.

Loike is especially critical of companies that provide diet, exercise and supplement advice based on the results of their DNA testing. Some go as far as to sell “personalized” supplements. Others, predict a person’s longevity based on the length of telomeres, or portions of a chromosome. While telomere testing has some merit in predicting longevity, writes Loike, the methods of testing used by direct-to-consumer companies are less accurate than methods used in the clinical laboratory. “Equally important is that a single telomere test can’t provide a true picture of biological aging because what is important is how fast the telomeres are shortening,” he writes. This would require multiple tests over time, something that most consumer labs don’t advertise.  

A larger problem is that these companies do not provide genetic counseling, yet genetic information for the prediction of disease is complicated and rarely black and white. Patients often need assistance in interpreting the information as well as in coping with the results, such as an increased risk of a life-threatening disease.

Loike lays out several requirements for DNA testing:

  • Consumers should receive genetic counseling both prior to doing the tests and after receiving their results
  • DNA testing should only by available through clinically certified laboratories (not all of the direct-to-consumer labs are)
  • Results should be presented by certified geneticists to reduce the medical and psychological repercussions of either positive or negative data.

Lastly, Loike calls on the FDA to warn the public of the potential harm in using these DNA tests for medical reasons and for doctors to discourage their use.

About the Touro College and University System

Touro is a system of non-profit institutions of higher and professional education. Touro College was chartered in 1970 primarily to enrich the Jewish heritage, and to serve the larger American and global community. Approximately 19,200 students are currently enrolled in its various schools and divisions. Touro College has 30 campuses and locations in New York, California, Nevada, Berlin, Jerusalem and Moscow. New York Medical College; Touro University California and Touro University Nevada; Touro University Worldwide and its Touro College Los Angeles division; as well as Hebrew Theological College in Skokie, Ill. are separately accredited institutions within the Touro College and University System. For further information on Touro College, please go to: www.touro.edu/news