GINA Series - Bill of Health

Uncertainty and Immutability: Arguments for Genetic Nondiscrimination

January 9, 2020January 7, 2020 Kaitlyn Dowling Leave a comment

By Kaitlyn Dowling, based on research by the Cyberlaw Clinic at the Berkman Klein Center for Internet & Society

In a 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. Read the previous posts in the series.

We’ve covered the history of genetic non-discrimination legislation and the potential risks of being discriminated against in housing and lending and education based on genetic data. Those risks are clear: there are many reasons why a bank, landlord, or school might want to take a person’s genetic information (and, thus, their potential future health) into account. Let’s take a deeper dive into two broad arguments in favor of strong privacy protections for genetic information and their consequences.

Uncertainty

A common policy argument in favor of genetic non-discrimination legislation is that genetic discrimination is unjust because the outcomes implicated by one’s genes may never manifest. In 2001, President George W. Bush stated that “[g]enetic discrimination is unfair to workers and their families. It is unjustified – among other reasons, because it involves little more than medical speculation. A genetic predisposition toward cancer or heart disease does not mean the condition will develop.” Read More

Illustration of a street lined with houses

Genetic Discrimination in Housing and Lending: What’s the Risk?

November 15, 2019November 15, 2019 Kaitlyn Dowling Leave a comment

By Kaitlyn Dowling, based on research by the Cyberlaw Clinic at the Berkman Klein Center for Internet & Society

In a 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. Read the previous posts in the series.

Nondiscrimination in Housing and Lending

Most states regulate the use of genetic information in some way, but protections are typically limited to employment and insurance. To most people, those two areas of protection seem obvious: it’s easy to see why your health insurer would want to know if you’re likely to become expensive to cover. Likewise, you can also understand why potential employers would want to know if they’re about to hire a worker who’s likely to need significant time off to attend to health issues. Only a select number of states ban genetic information discrimination in other contexts, like education, disability insurance, and life insurance.

The letters A, G, C, T in different colors repeated on a white background

The Birth of GINA: An Interview with Jeremy Gruber

October 22, 2019February 7, 2020 Kaitlyn Dowling 1 Comment

By Kaitlyn Dowling

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.

The following is an interview with Jeremy Gruber, Senior Vice President at Open Primaries and the former President and Executive Director of the Council for Responsible Genetics. Jeremy Gruber led the passage of the Genetic Information and Nondiscrimination Act and other state-based genetic nondiscrimination legislation. As part of our series on GINA, he offered insights into GINA’s creation and what the future may hold for genetic nondiscrimination. The following interview has been lightly edited for length and clarity.

Genetic Discrimination in Education: What’s the Risk?

September 23, 2019September 20, 2019 Kaitlyn Dowling 2 Comments

By Kaitlyn Dowling, based on research by the Cyberlaw Clinic at the Berkman Klein Center for Internet & Society

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.

Legislating Genetic Non-Discrimination: What Is GINA and Why Does It Matter?

September 9, 2019September 9, 2019 Kaitlyn Dowling Leave a comment

By John Novembre, Mason Kortz, Kaitlyn Dowling

What if the hidden code underwriting your humanity could be used to prevent you from getting approved for a mortgage? Or siphoned you into a different classroom from your peers? What if the specter of an illness — possibly years away from manifesting — kept you from getting a job? The Genetic Information Non-Discrimination Act is a law passed in 2008 aimed at protecting Americans from discrimination based on information gleaned from genetic testing. With increasing access to genetic counseling in a traditional clinical setting, as well as the growth in popularity of direct-to-consumer genetic testing (like 23andMe), GINA is more relevant now than ever.