DNAdigest interviews Free the Data – Part 2

As promised last week, we are publishing the second part of the so intriguing interview with Sharon Terry on the Free the Data Project. Last week you learned about the aims and goals of the project and what Sharon did to support and launch it. What about the future plans?

Here it is, enjoy every bit of the interview as well as all the interesting video.

Did you miss the first part of the interview? Read the first part of the interview with FreeTheData

Sharon Terry

Sharon F. Terry, President and CEO of Genetic Alliance

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4. Who is the intended audience for your campaign and how are you reaching out to them?

Free the Data’s target audience is ultimately the public. As we move into an era of genomic medicine, it’s essential that we pool as many of our resources as possible to understand genetic variation and its effect on human health – and who has more information to offer than the men and women who have these mutations? It’s important to me that consumers understand the value of shared genetic data, and that they have the tools they need to share their data if they choose… whether this means simply knowing that a genetic testing lab shares data, or whether it means choosing to share data themselves through a platform like ours. If we are really going to accelerate solutions in healthcare, this type of engagement is critical. As to how we’re reaching out to our audience… Free the Data is, without a doubt, a grassroots movement. To enact change on this scale we have to reach individuals. To reach as many people as possible, then, we are building a diverse coalition of individuals and organizations to help spread the word about the movement. Anyone is welcome to join the coalition, and contribute what they can to this effort. We already have members from the medical genetics community, from the disease advocacy community, and from industry.

 Free the Data Coalition

The growing Free the Data Coalition, as shown on the Free the Data website. Individuals are indicated in blue; organizations in red.

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5. Could you explain how people can join the project? Are there any restrictions on who can share their data?

Anyone is welcome to join the movement to Free the Data, and there are many ways to do so! In addition to joining the Free the Data coalition, which is centered on increasing awareness about the benefits of open access to genetic information, individuals and organizations can share data to help improve our understanding of hereditary breast and ovarian cancer and other genetic conditions. For individual men and women – we encourage them to use the Free the Data platform to share their genetic testing reports for BRCA1/2 with the open access resource ClinVar, including reports that are part of larger hereditary cancer panels. If they choose, men and women can also use our platform to share additional phenotypic information with researchers of their choice. There are multiple ways for clinicians and genetic testing labs to get involved, as well. Clinicians can share their patients’ Myriad reports for BRCA1/2 through the Sharing Clinical Reports Project, or they help their patients to do so themselves by sharing information about Free the Data. Genetic testing labs can share data for any genes with ClinVar… We actually encourage them to do so directly, so that information about genetic variants is openly available from the get-go. And labs can also share information about Free the Data with recipients of relevant tests. As I mentioned earlier, we currently accept BRCA1/2 reports on their own or as part of larger hereditary cancer panels. But I think it’s important to note that Free the Data is also not just for those who’ve received genetic testing reports from labs that don’t share data (although, given the circumstance, it is especially important that we engage recipients of these tests). The Free the Data project is also a way for men and women to share additional phenotypic data with their genetic variant, if they choose.

 Together we can Free the Data

The Free the Data Platform, through which individual women and men can share their genetic variant data with ClinVar and other resources of their choice.

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6. What do you think the biggest obstacle when launching Free the Data was? And now after you have overcome it, what are your plans for future development of the campaign?

To date, I’d say one of our biggest challenges has been to make a complex message simple, and an onerous process easy. People do not generally understand that they are the key to accelerating research and the interventions that will come of it. We are generally disconnected from the urgency of this activity, until we are diagnosed with a life-threatening illness and need effective therapies. It is therefore hard to motivate people to participate unless they are in dire situations. It is also not easy to describe the importance of sharing variation and clinical data to the lay public. We have attempted to overcome this obstacle with a beautiful video produced by one of our coalition members, Joanna Rudnick. She herself has a BRCA1 mutation and has experienced breast cancer. She is the filmmaker behind “In the Family”, and has generously given of her time to create a very public-friendly message, which gives the average person a terrific on-ramp to data sharing. Another way we have overcome this is through the dynamic and passionate message shared by our honorary chairwoman, Representative Debbie Wasserman Schultz. We look forward to getting the word out to ordinary citizens through major media with Rep. Wasserman Schultz as such an articulate spokesperson.

 Freeing the Data

Free the Data is working to engage the public in data sharing. In a video project from Free the Data steering committee member Joanna Rudnick, individuals with BRCA mutations come together to create a community mural depicting the BRCA1 and 2 genes, and share their reasons for Freeing the Data. (Video available here.)

The future of Free the Data lies in bringing this message to the mainstream, and beyond BRCA to all genes and all variation. PEER is designed to give individuals the ability to share their health information far and wide, so that public databases like ClinVar are robust. Furthermore, variation must be associated with clinical information to accelerate progress toward health. PEER will enable this activity longitudinally, and we plan to open our doors to all variation as we have already done for all diseases.

 Sharon Terry and Congresswoman Debbie Wasserman Schultz

Sharon Terry interviews Congresswoman Debbie Wasserman Schultz about her reasons for joining the Free the Data movement. See a clip from the interview here.

dna 7. What does ethical data sharing mean to you?

First, data sharing is not an absolute good. It is in the service of accelerating better health, and so ‘ethical data sharing’ should be measured by how well it fulfills that requirement. In this day and age, any company or academic group that doesn’t share variants is simply behaving in an unethical manner. In other words, the day of hoarding data is over – it is inherently unethical since it prevents associations that are critical for advancing health. Ethical data sharing must follow the granular and dynamic data sharing requirements of each individual in the context of his or her lived experience and culture.

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8. In your opinion, what is most important thing that should be done in the field of genetic data sharing?

Just do it! Let’s all demand that labs share variants. Clinicians and patients should boycott labs that continue to hoard data – an end of hoarding data. Can you imagine if the public knew that labs or scientists are hoarding data and slowing progress? Let’s all work together to shed light on this harmful secret.

 Free the Data

Follow FreeTheData on Twitter and visit www.free-the-data.org

Did you miss the first part of the interview? Read the first part of the interview with FreeTheData

Are you part of a project that facilitates data sharing for genomics research? Would you like to be featured on our blog? We would love to hear from you. Drop us an email or use our contact page to get in touch.

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