Genetic surveillance: Is our most sensitive information secure?

When I watched the movie “Gattaca” in seventh grade biology class, I was fascinated not by the genetic engineering but rather by the level of genetic surveillance. Unfortunately, genetic surveillance is not a farfetched, sci-fi movie plot device, but rather a reality of the modern era.

For example, the Chinese government has collected DNA samples of more than 80 million citizens. This program is ethically concerning for at least three reasons.

First, government collection of DNA is itself controversial, especially if it is nonvoluntary, because DNA contains sensitive personal information. Clear rules for ethical access to and use of the DNA and robust privacy and security measures must therefore be in place to justify a genetic surveillance program.

Second, many of the Chinese DNA samples were collected under the false pretense of receiving a “free health check.”  This is problematic, not only because of the dishonest collection method used to gain genomic data but also because it undermines an individual’s ability to know what might be truly going on with their health – especially if the “health check” is not providing the individual with any usable health data.

Third, it has been reported that the purpose of the Chinese program is to increase surveillance more broadly on the country’s citizens, and in particular to identify and track Uighur Muslims, as a tool for even more unethical programs, such as re-education camps. This goes beyond “Gattaca,” using genetic surveillance to support discriminatory practices based on misguided biological assumptions about socially constructed concepts like race and ethnicity.

There is a tendency to think that this type of genetic surveillance couldn’t happen in the U.S.  However, the U.S. Justice Department recently amended the DNA Fingerprint Act of 2005 that cleared the way for DNA collection from detained immigrants, including asylum seekers whose status hasn’t yet been resolved.

DNA collections from detained immigrants was ostensibly in the interest of national security, with results being stored in the federal DNA database for criminals (CODIS), which only stores STR data rather than SNP data (SNP data is more efficient for ethnic profiling), and while CODIS has strict regulations, it has expanded dramatically since its inception in 1990. There must be protections put into place so that future expansions do not morph into building complex ethnicity profiles that can be used in discriminatory and harmful ways.

Regardless of the scheme that is used to collect and store DNA by the federal government, strong protections are needed to ensure that legitimate practices to advance national security and promote public safety do not morph into a prejudicial and dangerous surveillance system like the Chinese government has built.

In the U.S., recent reports suggest that existing safeguards which prevent the U.S. government from spying on U.S. citizens were circumvented to reveal U.S. journalists’ sources, indicating that this is more than a conspiracy theory. It threatens the privacy of all citizens and, given the focus on detainees, could lead to discriminatory travel bans and immigration policies based on ethnicity (as determined from genetic ancestry).

The U.S. has a history of discrimination in immigration and the granting of citizenship on the basis of ethnic origin. Specifically, this can be seen in the Nationality Act of 1790, where only free white men could become citizens, the 14th Amendment, which limited citizenship to only Whites and those of African descent, the Supreme Court cases of Ozawa vs U.S. (1922) & U.S. vs. Bhagat Singh Thind (1923), and the Chinese Exclusion Act, all of which excluded the citizenship or immigration of those of Asian descent.

While this may seem like ancient history, these racist policies have established precedent that continues to inform what many consider an unethical and racist immigration system contemporaneously.

Given this history and the potential for DNA to be used for discriminatory purposes, I believe that the government should be allowed to collect, store, and access DNA only in the most limited of cases (e.g., from those convicted of crimes). Instead, individuals who want to share their DNA, should be encouraged to submit their DNA with consent to non-governmental entities set up for those purposes. Those entities should be strongly regulated to protect the security of the sensitive information they retain.

It must be recognized that sensitive information about a person is stored in their genetic code, and they should, in most cases, have the autonomy to decide what to do with that information.

-By Caroline Beit, summer intern with the Center for Medical Ethics and Health Policy at Baylor College of medicine; Beit is currently a junior at Yale University studying the History of Science and Medicine on the pre-med track.