By Kaitlyn Dowling, based on research by the Cyberlaw Clinic at the Berkman Klein Center for Internet & Society
In a new, year-long series on Bill of Health, we’ll be exploring the legal scholarship on genetic non-discrimination. We’ll talk more about GINA and state laws protecting citizens from genetic discrimination. We hope these posts help shed light on this complex and ever-more-relevant area for legal scholars, policymakers, and the public at large.
As discussed in our last post, most states regulate the use of genetic information in some way, although usually only in employment and insurance. Comparatively few states have protections against genetic discrimination in other contexts. Today, we’re exploring education protections in eight states: California, Illinois, Massachusetts, Michigan, Utah, Virginia, Washington, and West Virginia.
In comparison with other genetic non-discrimination protections, most states have not acted to implement protections in the education context. California, West Virginia, and Washington are the only states out of the eight surveyed with these types of protections.
California’s own version of the federal GINA bill is called “CalGINA.” This expansive law prohibits discrimination on the basis of genetic information by both public and private schools.
Genetic information is quite broadly defined to include:
- the genetic tests of an individual or their family members;
- the manifestation of a disease/disorder in an individual or their family members; and
- the fact of receiving or participating in genetic services.
CalGINA’s states that the “range of protections [under federal GINA was] incomplete for Californians” and that the state had a “compelling public interest in realizing the medical promise of genomics[,] . . . relieving the fear of discrimination[,] and in prohibiting its actual practice.”
The West Virginia Code focuses on privacy, prohibiting the West Virginia Department of Education from collecting and transferring “confidential student information,” which explicitly includes genetic information.
The legislative history of these amendments focuses on limiting the transfer of student data to vendors and other profit-making entities. The statute was originally labeled as “The Student Data Accessibility, Transparency and Accountability Act.” Additionally, the West Virginia Human Rights Act provides a general protection against discrimination and withholding opportunities in the context of education as a “public accommodation.”
Washington’s state privacy laws restrict the collection of biometric information, including DNA, by any state agency, such as the Washington Department of Education, without first obtaining individual consent. However, the statute provides an exception for law enforcement agencies.
It is interesting to note that the original and final drafts of the bill introducing the statute make no direct reference to education and focus on distinguishing between unlawful and lawful collection and sharing of biometric identifiers rather than on preventing genetic discrimination specifically in education. Instead, the statute is a general law that prohibits the collection of biometric information by state agencies and only incidentally imposes restrictions on the collection of genetic information in the form of DNA as a category of biometric information. Conversely, the Washington State Constitution expressly protects against discrimination in the education context, but does not specifically mention genetics or biometrics.
Massachusetts, Illinois, Michigan, and Virginia attempted to provide protections in the education context, but these bills all failed. The majority of these failed bills concerned imposing restrictions on the collection and transfer of genetic information rather than on prohibiting discrimination in the context of education. With the exception of Illinois, all of these states’ constitutions already prohibit discrimination on the basis of traditional protected classes, such as race, gender, and age in education.
Utah is an outlier as the only state that appears to expressly authorize the collection of students’ biometric identifiers or information, including information used to identify an individual – such as genetic information – on certain conditions by public schools under its Student Data Protection Act.
Concluding Analysis of the Education Context
The states we’ve studied have passed legislation with the purpose of:
- prohibiting the collection or transfer of genetic information, or
- prohibiting specific uses of genetic information.
These approaches reflect two “models” for framing legislation. On the one hand, prohibiting the collection of genetic information stems from the privacy model, which seeks to restrict access to genetic information and to secure individual data. On the other hand, prohibiting specific uses of genetic information aligns with the underlying aim of the anti-discrimination model: to prevent people or entities making discriminatory judgments on the basis of genetic information.
These models aren’t necessarily mutually exclusive. As we discussed in our last post, at the federal level GINA applies a “belt and suspenders” approach that encapsulates both the privacy and the anti-discrimination models. In the education context, the privacy model dominates. California is the only state we surveyed that explicitly adopts an anti-discrimination model-based framework.
Considerations for Future Legislation & Risks of Discrimination in Education
Efforts to enact protections against genetic discrimination at the state level will likely face many of the same challenges that GINA had to overcome at the federal level. In particular, the lack of research on genetic testing and its impacts could bolster the claim that genetic discrimination is a non-issue. Such arguments fall short of recognizing that genetic testing is becoming more widespread, and the current uses of genetic testing are a poor indicator of what will be in place in the near future. In addition, broader coverage of the ADA could lead legislators to argue that state-level interventions are redundant. However, existing legal frameworks, like the ADA, may be insufficient to protect against genetic discrimination in education.
Many tangible examples confirm the risk of genetic discrimination. Legal scholarship characterizes genetic tests “as an extension of earlier pedagogical and psychiatric tests” used to classify and stream students. Arguably, such streaming of students according to cognitive ability and behavioral traits can help address the individual needs of students and could, potentially, maximize students’ potential. This assumes genetic tests can accurately predict students’ educational attainment. But these same test results could be used to pigeonhole and intensify competition between children for access to limited educational resources. For example, commercial genetic testing providers advertise services that claim to identify genetic traits in children like intelligence, athletic ability, and artistic talent. In China, a similar industry has recently sprung up around “talent testing” to spell out children’s strengths and weaknesses. Similar companies in the U.S. offer tests that, supposedly, can predict a child’s language, mathematical, and musical pitch capabilities.
At present, the accuracy of prediction for a single individual is questionable at best, but in large numbers, there is increasingly information to be gained and, in turn, increasing risk of discrimination. Therefore, genetic nondiscrimination laws are likely going to be crucial in an education context as a mechanism for preventing the labelling and stigmatization of students.