Tags: research and discovery , community partnerships

Tom Fryer, a 69-year-old retired financial advisor, is also someone whose genes could be helping find cures for cardiovascular ailments. And cancer. And a host of other gene-related diseases that are in desperate need of a cure. It’s all because Fryer made the decision to contribute some of his blood to the Partners HealthCare Biobank.

By making a contribution, Fryer added his genetic information to a repository of more than 38,000 participants. Each contribution supports more than 60 ongoing research studies in fields that include cancer research, cardiovascular care and diabetes, and many more.

And as a member of the Biobank Community Advisory Council, Fryer helps craft “layperson” communications about the Biobank for patients and other interested parties, to help explain the research and where the discoveries might lead in the future.

First of all, could you tell us a little about yourself, and why you felt motivated to volunteer for the Biobank?

I’m retired now, 69 years old, and I worked finance for 20 years in Boston and Wall Street. About ten years ago, I became involved in a Patient Family Advisory Council at MGH. It turns out I’ve got all the family markers for potential heart disease. I’ve had family members who have all had stents, or heart attacks, or bypass operations. My doctor at the time was a general practitioner at MGH, and he suggested I go to see Paul Huang [the Director of the Massachusetts General Hospital Cardiac Metabolic Syndrome Program]. Dr. Huang has a program that helps people who have not had heart issues, but are at risk [because of family history]. As a result of participating in that group, the Biobank reached out with a request to get the Community Advisory Panel started.

We’ve also got two daughters who are involved in health care. One is involved with neuroscience at UCSF, and our other daughter is getting her doctorate at Harvard. As result of conversations with them, I try to stay in touch with what is going on in the health care space overall. Our older daughter is also a researcher familiar with the challenges of getting grant funding from the NIH, and knows all about how funding has started to shrink relative to what it has been. So all of that was incentive to become more involved, especially since the Biobank can result in lower costs for researchers, in part because they are contributing data to less studied diseases. 

The Biobank by the numbers: 38,000+ participants, 60+ supported studies, 9,000 genotyped samples, 450,000+ stored samples.

How would you describe your role with the Biobank and the Community Advisory Panel?

The advisory panel is a sounding board. We play the role of the general patient by definition. One member of the panel is a retired doctor from North Shore Medical Center. Another member is a researcher who once was involved with grant procurement for Harvard. Another has a background in writing. We meet bimonthly, and we’re responsible for input on a lot of the Biobank marketing materials you’ll see throughout the Partners system.

What are some of the latest developments from the Biobank and the committee?

Our last meeting was interesting because we’re dealing with how the Biobank and doctors might frame the initial communication with a patient when it is discovered that they have genes that may be linked to a specific disease. We’re working to determine materials that will help physicians tell an individual if he or she has this predisposition (breast cancer, for example). So we’re looking at how we structure and create the materials and communications we would send to those individuals.

This is actually an incredibly important communication to think about: if you have a gene that was discovered in the Biobank that had a link to a potential disease, would you want to know about it? If a patient does want to know, what do you do? We have to ask these questions, not only because of what it could mean for the patient, but also because it may lead to complicated scenarios where an issue or predisposition becomes something an insurer wants to know about. It’s a complicated process, with a lot to be done, but we know the end result will be a positive one.

Why do you think it’s important that people get a better understanding of the research being supported by the Biobank?

For me the importance here is not purely about the research that Biobank does, but also the general support for research that it fosters. If a researcher goes out and has to collect blood samples, for example, it can cost up to $1,000 per sample. It gets expensive. Biobank offers the ability to get data for specific disease types from the database. It employs powerful algorithms that help lessen cost. The Biobank Advisory Panel then gets this work communicated out through various organizations to spread and build awareness. I know that MGH has made the Biobank a strategic priority, and other organizations within Partners may roll it out soon. It's going to get bigger and bigger, and will have a tremendous impact on research that should help everyone’s health.

Are there specific areas of research you’d like to see given focus? We want to keep the research as broad as possible. We’re already in all of the major clinical areas, from vascular to emergency and so on. And if you look at the list of research that is currently being done, it runs a very broad gamut. Personally, I’ve got arthritis, and as I read through the list of research, I saw many doctors are actively doing research on this ailment, and that made me hopeful. Not necessarily for my benefit, but for the others in the future.

Why do you think others like you should join the Biobank?

My big hope is that as we continue to communicate the enormous benefits that the Biobank has to the public, more volunteers will join. It’s a way for each individual to participate in an effort that will help everyone. It’s an aspirational effort, to be sure, but the Biobank undeniably benefits the here and now too. As the database gets bigger, we’ll find out more and more, and hopefully the research identifies more direct genetic links to disease, and we can help inform patients of any predispositions they may have.

What’s one thing you’d want people reading this to take away about the Biobank? I would want people to understand just how easy it is to contribute and that it’s something that will have a positive effect on others, and on research. I think ultimately people would find that they feel a great sense of pride once they participate.

Interested in the Biobank? Check out this link for information about registering for the program.