I’m a certified genetic counselor and I’ve witnessed the great benefits that can be realized with genetic testing.

Genetic testing can help individuals and their clinicians determine if they are at higher risk to develop the cancer, cardiac disease, or other genetic conditions that afflicted generations of their family members. They can then detect the signs or symptoms of these diseases earlier, when easier to treat, or even reduce their risk of ever developing these diseases. Testing on a tumor sample may help clinicians choose the most effective treatment strategy and avoid drugs unlikely to be successful. Genetic testing can help families with rare conditions finally find a diagnosis, learn what to expect, and identify the best interventions, medications, and therapies.

I know the future of genetic testing will include broad screening of healthy individuals to help them choose the right medications, the right health screenings at the right time, and to avoid medical interventions they don’t need.  But what else will the future of genetic testing hold?  The better question may in fact be: what does it hold right now?

The Golden State Killer case demonstrated that consumer DNA databases in the United States are substantial enough to track down many (if not most) people through a DNA sample and the branches of their family tree, even if they have never had genetic testing.  The same process has now been used to solve dozens of cold cases involving murderers and rapists– great news, right? But genetic testing is being used in new and inventive ways – and some are nefarious.

·     China is using DNA testing to target and track a group of their own citizens called Uighurs, a Muslim ethnic group. China has already detained up to one million Uighurs and sent them to “re-education camps.” They are creating DNA databases to further this mission.

·     The United States government is using genetic testing at the U.S.-Mexico border to determine if family relationship claims are “accurate.” The government claims this practice will be used to weed out “fake families” and reduce human trafficking. But what happens to children who are adopted or raised by parent(s) who are not their biological relatives? How will these DNA samples be used in the future to track these immigrants? Has the government created protocols and consents for these situations?

·     The CIA gathered DNA samples in Pakistan, under the ruse of a fake vaccination program, to track down family members of Osama Bin Laden. How would we feel if DNA samples were taken, without consent, from US citizens by a foreign government to trace ancestry to one of our leaders? Or a specific ethnic group?

Some genetic testing companies have consented to allow the FBI access to their databases in certain situations, while others say they will refuse – but is it fully possible to refuse? What would prohibit the government, an individual, or a foreign body from submitting a DNA sample under a false name to find family members in one of these databases? Only the lack of an appropriate DNA sample, most likely.

The field of genetic testing has bounded forward, far apace of the development of national or international regulations governing its use. DNA technology and databases, both public and private, are being used in ways never intended by their inventors. It is unlikely that, even if regulations were drawn up today this genie could now be shoved back in the bottle. What is for certain is that we haven’t even begun to imagine the ways in which this technology and these databases will be used in the future.