In China, authorities are collecting DNA from detained Uighurs — a predominantly Muslim minority group — for projects like using genetic material to map faces. A Tuesday New York Times report said these authorities are “testing the rules of science.”
The U.S. government seemingly wants to bend those rules, too.
On Oct. 22, the U.S. Department of Justice published a proposed rule that would authorize federal agencies to store DNA samples from detained immigrants. After its publication date, this rule collected feedback from the public until Nov. 12, and it remains under consideration.
What Peter Pitts from the nonprofit Center for Medicine in the Public Interest calls “the most valuable thing you own,” your genetic code is unique to you and telling of information that only the owner should be privy to. Violating that privacy directly contravenes the support that Philadelphians especially show for immigrants, refugees, and other displaced people — as we saw this summer when residents marched in solidarity in Center City against the opening of the VisionQuest detention center and for the closure of the Berks County Residential Center.
DNA samples can be used to derive all kinds of sensitive information about a person. For one, we can conduct genetic testing for mutations. When people willingly purchase genetic tests, consumers can refer to the results to avoid future unnecessary screenings for diseases or to begin behavioral plans to prevent diseases.
On the other hand, information from genetic testing can be used quite maliciously. When an employer or a health insurer uses DNA to avoid hiring or covering someone’s fees, this act presents itself as what the National Institutes of Health calls “genetic discrimination.”
Although several laws exist to protect against genetic discrimination, the federal Genetic Information Nondiscrimination Act only refers to discrimination in the workplace and by health insurers. If the U.S. government pushes through the Department of Justice’s proposed rule, we may just need more robust protections.
Such protections should explicitly prevent the use of those samples to discriminate against detained immigrants seeking to apply for entry or asylum on the basis of having genetic predispositions for any disease. While the proposal specifies that the government will use “sanitized” DNA, wherein information on traits or genetic predispositions would not be available, it included no details on the sanitizing procedures. Among other scenarios, the rule should bar the use of samples to gather information on family history.
One reason offered for this proposed regulation is to increase methods of identification. While identification is necessary, sampling the DNA of someone under the legal pressure of detention is insensitive and dangerous. Moreover, if individuals who are detained become American citizens, their DNA may remain in this network with no indication of how it was used.
We pull hardworking immigrants into detention centers. Will we now pull their DNA into databases?
The Justice Department also claims the DNA will be useful in the event of a crime. However, presuming that these people committed or will soon commit a crime shows bias. Bias has the potential to skew the reporting of data in ways that researchers may be unaware of — and includes prejudices like the assumption that an immigrant needs to be tracked for potential crimes.
To illegally reside in the U.S. is a crime, yes. But to seek after better living conditions for your family, to flee violence, and to work honestly for an improved livelihood, is not. And research shows that refugees give back to society through taxes within eight years after resettlement.
As a student of public health, I have come to understand that health is not solely determined by your ability to get to a clinic. Social determinants — factors outside of health care including your environment, socioeconomic elements, and health-related behaviors — actually account for an estimated 80% of your health status.
These determinants include poverty, exercising, neighborhood safety, and even racism. As a community and as a nation, we need to avoid contributing to what could be genetic racism and detrimental to future population health.
Philadelphians, and Americans, should keep speaking out against discrimination. Keep marching for human rights and privacy, as this city did over the summer. And keep protecting public health, no matter who that includes.