A few years ago President Barack Obama announced an initiative to collect the DNA of one million people in the U.S. The idea: to create a database with all the information, and then open it up to researchers. The hope: to create medical advancements based on specific genetic traits.
The research is funded by the National Institutes of Health, and one big goal is to enroll people who have traditionally been underrepresented in research: minorities. And this is why on Thursday, a bus was parked at the University of Louisville broadcasting the benefits of DNA testing and precision medicine. This bus is touring around America, trying to convince people to give up their blood and urine samples for the greater good.
As of October, about half of the samples the NIH had collected were from racial and ethnic minorities. Luis Astacio, the assistant bus tour manager, said this is key.
“Two percent of African Americans are ever asked to be part of a research study and one percent of Latinos are ever asked to be part of a research study,” Astacio said. “You can see that there’s an opportunity there, right? For representation.”
That’s why this bus is going to be at the Americana World Community Center on Saturday, and Hill Street Baptist Church on Sunday. Minorities are sorely under-represented in research. This means that medical advancements and knowledge are largely based on white people. So these advancements may not benefit — or may even end up harming — minorities.
But there are potential drawbacks. Tiffany Li, a fellow at Yale Law School’s Information Society Project, said privacy is a concern.
“So if one of your even distant family members donates DNA to this initiative, or to some other initiatives, basically your entire bloodline has essentially had their DNA privacy given up,” Li said. “That’s a weird sort of consent issue that we don’t really know how to deal with in privacy law right now.”
Of course, the DNA goes through an encryption process twice, according to Astacio. Names are removed before DNA is ever sent to the database and random numbers are assigned. Then those numbers are mixed one more time before the data is transmitted.
But Li said it’s conceivable that this anonymous database could be cross-referenced with datasets that contain names and identifiers, such as commercial DNA sites.
There are also other concerns that may sound more like science fiction at this point. Experts say hackers could gain access to the DNA samples and use that information to wage chemical warfare. Li said there’s even talk among future-looking scientists about the possibility of cloning participants.
But for the more than 100,000 people who have participated, the benefits outweigh the risks. Robin Richmond, who works security at the University of Louisville, said the research is worthwhile, and she’d consider donating her DNA for science.
“You can do a blood type, race, and that way you get a better understanding of things like diabetes, heart disease and mental health,” Richmond said. “I don’t think they should be thinking about something that’s going to happen in year 3030 or something like that.”
Edgardo Mansilla also did a cost-benefit analysis when deciding to partner with the NIH in bringing to the bus to the Americana World Community Center. Mansilla, the executive director, said that health research on Latinos is not robust.
“At the end of the day, we need to reconstruct in our society the sense of community,” Mansilla said. “We are so used now to the idea of ‘I, myself and me’ that we forget the ‘we;’ and we forget the common good.”
This specific bus doesn’t take blood and urine samples. But it does provide information about the project and gives people a way to sign up.