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.
How did you become involved with genetic nondiscrimination efforts and the passage of the Genetic Information Nondiscrimination Act (GINA)?
I started working at the state level on some of the laws that were being developed in the early nineties around genetic discrimination and genetic privacy. That led to working on GINA, which I worked on for about 12 years until it was passed in 1998. I worked on every aspect of GINA’s from the advocacy and public education, to the drafting, to working with legislators on Capitol Hill.
There were a lot of roadblocks on the way to passing GINA. What was it like to work through that?
People who worked on the issues learned a lot of good lessons in patience. There were a number of federal bills in the early nineties that were being introduced, but they were all focused on the health side of things. One of the very first hurdles we had to overcome was including employment protections. There was the assumption that the Americans with Disabilities Act (ADA) was sufficient to cover any employment aspects through GINA.
We had to show that while the ADA provided some protections, it was not nearly sufficient to cover the critical issues. Then, we had to design a more specific framework. The first major policy hurdle was getting employment included. We needed a comprehensive bill and then to build a coalition around that – a coalition of both organizations and members of Congress.
How did you convince legislators that GINA was necessary, that the ADA wouldn’t be enough to protect people?
The Supreme Court and the federal courts, generally, were taking limited views of the prong of the ADA that deals with perceived disability. That was the prong that opponents of adding employment protections to GINA were holding up as sufficient. We made that the legal case.
GINA was an opportunity where we saw real examples of discrimination, but they were still very early stages. We had the opportunity to be proactive in passing legislation. We did a lot of work to engage individuals who had been discriminated against to tell their stories. But equally important in terms of passing GINA was the argument that in order for biotech to continue to develop, people had to feel secure in participating in clinical trials and using biotechnology products in helping build the next frontier of health care.
They would not feel secure in doing that if they didn’t have the legal framework or protections into place to ensure they would not be discriminated against and that their information would be kept private.
Does GINA go far enough to protect privacy and prevent a chilling effect on research?
No, I don’t think any federal law goes far enough when it comes to things like privacy and discrimination. Every privacy law is achieved through some sort of compromise, but you’ll always wonder, “Could we have done more?” I don’t think we could’ve done more, but that in no way means GINA is complete.
We were able to cover health insurance and employment and because those were the areas where we’re seeing problems. Those are the areas where we were seeing people being affected negatively. But there are so many other areas where your genetic history might be used in a way that impacts you negatively. There are a number of states that have gone farther than GINA, for example, and passed a legislation in areas like long-term care insurance and disability insurance.
Given the growing popularity of direct-to-consumer genetic testing, do you think that there is more attention being paid to these privacy issues?
Well, it certainly should receive more attention. I think people have a very clear understanding that certain entities should not have their information because it can be misused. It’s easy for the public to appreciate why employers and insurers shouldn’t have access to their information because they’ve seen these types of entities misuse all kinds of information. It’s not just genetics – genetics is just the latest and most advanced form of information that health insurers and employers have used improperly.
Too often, consumers really have no understanding of how that information is handled, where it goes, or how it can be used. It’s really hard for people to appreciate just how much they are risking when they use a direct consumer genetic testing company. There are a lot of question marks about how that information is used. Is it just used in the aggregate? Is it really de-identified? The consumer has almost no information.
I like to say this with great pleasure I read with respect from Germany!