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Can Genetic Alliance Propagate Pharmacogenomics Research in US?


At A Glance

Name: Sharon Terry

Title: President, CEO of the Genetic Alliance

Background: Before being tapped to run the Alliance, she was president of its board of directors; before that she was a college chaplain

Education: Masters in theology

Age: 47


Last week, the Genetic Alliance tapped long-standing director Sharon Terry to be its new chief executive, a new position. Terry, who has also spent time as the president of the Alliance’s board of directors, takes the helm at a critical time in the history of genetics:

As more and more early-generation pharmacogenomics products — from molecular diagnostics to targeted therapeutics — begin making their way onto prescription pads across the United States, groups such as the Genetic Alliance are attempting to introduce the discipline to patients and physicians.

Drug makers are increasing the amount of money they spend on pharmacogenomics research, the US Food and Drug Administration will any day release a formal guidance on the submission of pharmacogenomics data, and the US Senate will soon begin debating whether to send to President Bush a genetic non-discrimination bill that was passed by the House of Representatives last year.

Is the Genetic Alliance ready for these challenges? More importantly, can its efforts help smooth the way for greater pharmacogenomics research? SNPtech Pharmacogenomics caught up with Terry this week.

The Genetic Alliance said that you’ll bring the group “to new heights of visibility and influence within the research-medical community and government.” What does this mean?

I think the Alliance has always had a tremendous history of organizing our groups in helping them to understand what the most important policy issues are, and how they can accelerate research. But I think we’ve reached a new place where we know now more concretely how we can influence the process.

For example, in the area of research, we’ve just established the Genetic Alliance Biobank. It will be a repository for lay advocacy groups to bank their members’ samples and data. Those member groups will own their samples and will therefore be better able to leverage research and accelerate the pace of research for their disease. They’ll also cooperate with each other, so ‘cross-disease research’ will be possible in a way it was never possible before.

In the area of policy, the Genetic Alliance has been working hard to see the Genetic Nondiscrimination bill passed (it was passed in the Senate 95-0 last year). We’re gearing up for a big push with our members’ members—which numbers somewhere around 11 million—to ask the House to get going and get this bill passed during this session. So those kinds of things we’re much more focused on, and we’re much more able to leverage the resources of our own members.

We’ve also begun to use some business models to do that. Instead of living as a lot of not-for-profits and ask, ‘Who is going to give us our next hand out,’ we’re actually saying, ‘What mechanisms can we find to make ourselves sustainable, and to ensure our growth?’

Where does the Alliance get its revenue?

About half is from government, and half is from foundations and industry.

It sounds as though you will be trying to broaden the net.


Whom will you target next?

What I think we want to do is show how the Genetic Alliance’s mission and goals and objectives actually meet the business plans of a number of business organizations. Industry in general know that they need to, first of all, have a good agenda about what gets done, and what doesn’t get done in terms of drug development, and our members care very much about that.

So the right combination of our member groups—both in terms of being participants in clinical trials and participants in post- drug development—will help industry to learn, for example: ‘Is the general public ready for the tools and technologies that are going to come down the pike, or do they need more education? If our members are savvy and educated about those treatments, then [these tools and technologies] will be more readily accepted. Early adopters will be even earlier adopters, and more frequent adopters [of new pharmacogenomics technologies]. …

Government, industry, and foundations will need to prove themselves in ways they didn’t have to in a looser and more generous economy. We’re well aware of that, and are ahead of the curve in the sense of trying to build metrics that will show those communities what we’re capable of, and what kind of impact we have.

What kind of relationship does the Alliance have with industry?

We have relationships both with individuals and with the umbrella trade organizations.

With what companies do you have ties?

We have a nice relationship with Genzyme, Transgenomic, Pfizer, Genomic Health, Affymetrix, and GlaxoSmithKline.

What do you see as the greatest challenges to pharmacogenomics from the perspective of the Genetic Alliance?

I think the first one—and it’s the easiest one—is the issue of genetic non-discrimination. We can get that bill passed, and if we do then a lot more people are going to be willing to participate in clinical trials, and it would help us build the kind of database we need for greater pharmacogenomics research.

I think probably the next [challenge] is the issue of regulation: namely, passing regulation that won’t become an impediment to research. I think the challenge for industry is getting physicians and payors to understand the importance of the technologies that are being developed sooner rather than later, so they can get to people faster.

How can the Alliance help meet these challenges?

I think the alliance can help industry understand that we have people who are very willing to be engaged in drug development in whatever way they need to be, in terms of donating biological material, or being part of clinical trials. The consumers we deal with need to understand the opportunities. For example, many of the companies I mentioned come to me and say, ‘Which [patient-advocacy] groups are ready for X, Y, or Z?’ We’re in the process of establishing a database that will contain genes, proteins, and pathways so that companies can jump in and determine which disease to go after.

How do you plan to get your message across?

We plan a couple of things. We plan to begin by organizing ourselves, and understanding how we make networks with each other. Then we hope to have ad blitzes or press conferences that are targeted about specific examples—like the genetic non-discrimination bill is another great example. We also have members sitting on all the major national committees in the National Institutes of Health, the Department of Defense, and Department of Energy.

What would the Alliance define as its most pressing short-term goals and long-term goals?

The first one is the genetic non-discrimination bill; we plan to move on that in the next two or three weeks. For this, we will work with other coalitions to figure out how to get the House to understand that this is a no-brainer: In an election year, this is a win for everybody. We have been working with families who have been discriminated against to see if they’d want to go public.

Long-term, I think it’s important to build the kind of relationship with the health industry to make sure they understand that we are savvy, we understand that nothing is black and white, we understand that regulations are important but that they shouldn’t be onerous.

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