Do Health and Forensic DNA Databases Increase Racial Disparities?

In the 1990s, scientists, social advocates, policy makers, and entrepreneurs debated the promises and perils of emerging digital technologies that could bring about enormous and wide-reaching changes in society. One set of debates revolved around the Internet while the other focused on genomics. Both framed the contours of the technological and social shifts in terms of the digital divide [1]. Politicians and entrepreneurs argued that connection to the Internet would be a basic necessity for all citizens and create a better society. Policy makers were concerned that women, racial and ethnic minorities, the working class, and unemployed citizens would be left out of the network revolution if they didn’t connect to the Internet. Scientists such as Walter Gilbert worried that the increase of biological information in databases from new genomic technologies would divide the world into haves and have-nots [2]. Instead of new technologies ameliorating social inequalities, many feared they would exacerbate them. In both cases of technological innovation, ‘‘access’’ would be the key to creating a more equitable, just, and democratic society. However, as the decade has unfolded, it has now become increasingly evident that who is in DNA databases and who is using them and why requires as much attention as who is connected to them. Since the completion of the Human Genome Project, there has been a global boom in DNA databases. Scientists, entrepreneurs, medical facilities, and law enforcement officials have uploaded a torrent of digital DNA information to public, commercial, university, medical, and law enforcement databases. Biomedical scientists extol the benefits of DNA for helping lead researchers to the genetic origins of complex diseases [3]. Law enforcement officials in Europe and North America claim that the expansion of DNA collection increases the ability to identify and apprehend suspects of crimes such as rape and murder [4]. Consumers pay biotechnology entrepreneurs to collect their DNA for the purpose of creating a personal medical profile and determining their genetic ancestry [5]. While the debates about the relationship between genome information and race rose and fell during the last decade, and the uses of DNA spread to different institutional contexts, there has been less attention paid to an emerging digital divide between health and forensic DNA databases. While we approach this intersecting set of issues from the perspective of North America, we hope that it has insights for other contexts.