By an overwhelming bipartisan margin, Congress has passed what sponsors are calling the first civil rights act of the 21st century: the Genetic Information Nondiscrimination Act. The Act, which President Bush is expected to sign, prohibits employers and insurance companies from denying people jobs, benefits, or health coverage because of their genetic make-up.
Past attempts to prohibit genetic discrimination failed after employers and insurance companies opposed them. But the Human Genome Project has given more and more Americans access to their genetic profile, and raised ever-greater concerns that DNA information will be used to limit opportunity and human rights in employment, health care, criminal justice, and other aspects of life. While the U.S. Chamber of Commerce still opposed the bill, it passed the Senate by a 95-to-0 vote and the House by a vote of 414-to-1.
The Act represents a welcome acknowledgement of how technological advances can both advance and threaten our national values and basic rights. DNA testing can help identify and prevent or ameliorate a range of debilitating diseases. Yet it can also feed societal biases—even lead to new ones—and stoke cynical and exclusionary business practices. The legislation is timely and important.
Two other issues at the confluence of science, equality, and human rights warrant quick attention from policymakers: subconscious bias and segregation from opportunity.
A growing body of research shows that, while old fashioned bigotry has declined, subconscious stereotypes and implicit biases continue to pose daunting barriers to equal treatment in health care, education, and the criminal justice system, among other sectors. Particularly compelling is the work of Harvard’s Project Implicit (https://implicit.harvard.edu/implicit/), which shows that we all carry around subconscious biases based on race, gender, religion, and other human characteristics that often influence our decisionmaking. The Institute of Medicine at the National Academies, among others, has found that such biases can influence health care and other decisions, including by professionals who have no conscious intention to discriminate.
Despite this established research, the courts have interpreted the Constitution’s Equal Protection Clause, as well as Title VI of the Civil Rights Act of 1964 (which bars racial discrimination in federally funded programs), to address only intentional efforts to harm people of a particular group. Because that reading fails to respond to the realities of modern exclusion, Congress should amend Title VI, and the next Administration should advocate a reading of the Constitution that embodies the Framers’ intention to eradicate discrimination, in its evolving forms, from our nation’s institutions.
A different technology, Global Information Systems (GIS) mapping, provides a powerful new way of understanding unequal opportunity, and addressing it. These maps, including interactive versions that use Google’s open source technology, can illustrate how some communities—predominantly low-income and minority ones—are physically disconnected from the steppingstones to opportunity like good jobs, quality schools, and health care services. A map developed by The Opportunity Agenda – http://www.healthcarethatworks.org — shows, for instance, how New York City neighborhoods like Southeast Queens have few or no hospitals, despite high levels of asthma, diabetes, low-birth-weight babies, and other health needs. John Powell of the Kirwan Institute on Race and Ethnicity at Ohio State University has pioneered the use of static GIS maps to measure access to opportunity in a number of cities.
Government, private industry, and community leaders should use these maps to redevelop neighborhoods and regions with access to opportunity in mind. Relevant agencies should collect and analyze the data necessary to make smart and equitable decisions, communities should have access to that information, and developers—especially those receiving government contracts or subsidies—should be required to make choices that expand opportunity rather than deepening inequality.
Like genetic information, our growing knowledge about bias and geography presents both challenges and opportunities. Used in the right way, each can help our communities and nation to rise together.