A Mighty Mouth for Data Sharing.

Genetic Testing and Molecular BiomarkersVol. 27, No. 4 PerspectiveFree AccessA Mighty Mouth for Data SharingSharon F. TerrySharon F. TerryAddress correspondence to: Sharon Terry, MA, Genetic Alliance, 26400 Woodfield Road #189, Damascus, MD 20872-7509, USA E-mail Address: sterry@geneticalliance.orgGenetic Alliance, Damascus, Maryland, USA.Search for more papers by this authorPublished Online:28 Apr 2023https://doi.org/10.1089/gtmb.2023.29068.perspAboutSectionsPDF/EPUB Permissions & CitationsPermissionsDownload CitationsTrack CitationsAdd to favorites Back To Publication ShareShare onFacebookTwitterLinked InRedditEmail Each month, readers of this Perspective piece get a smattering of current issues related to genetic testing and molecular biomarkers. These are far-reaching, and over the years that I have offered these Perspectives, I have often covered some aspects of ethical, legal, or social issues inherent in these cutting-edge fields.The most common issue I have written about by far is data sharing. My main tenet is that we cannot treat data as gold or oil, selling it and hoarding it. We must be converting our thinking to an abundance model, in which we notice that data are similar to air. I felt very alone when I began to beat this drum in 1994.1A few years later, not so. Many others began to coalesce around the slogan “Free the Data.”2 We found our fellow warriors in various meetings and committees and became a loose community crusading together.One of our warriors is dying. I want to use this space this month to give her voice, knowing that her writing and messages will long outlive her. It feels right and necessary to bring her to a wider audience. She has dedicated her life to this cause that is a transformational piece in amassing and analyzing genetic testing and molecular biomarker data for the public good.For a couple of decades, Casey Quinlan, AKA Mighty Mouth, has been telling it like it is. She stormed the halls of federal and state legislatures, major United States Department of Health and Human Services committees, the White House, and anywhere else that would or would not listen. Her messages range from “Free the Data” to frank observations about how the data are being sold and included cries such as “If you are selling my data, cut me in.” Casey is loud, passionate, and compassionate. She is formidable and forgiving. Casey moves fearlessly in the world of authority, challenging it all the way.Casey tattooed the QR code for her electronic medical record “over her heart” in her personal crusade for data liquidity. She hoped to make a mark on more than her own heart, and that tattoo was a show starter on many occasions. Hearts and minds were turned.In a 2017 post on Medium, Casey declared, “Let's make it happen. Let's take to the streets, the halls of Congress and state capitols, policy meetings, and star-chambers from sea to shining sea, to demand compensation for the ginormous wads of cash that are minted—literally—from our bodies, bones, blood. Let's scare these thieves into giving back some of the data-cash they're pretty straight-up stealing from us.”3The Society of Participatory Medicine recently recognized Casey as a “force of nature” in pursuit of a better world of health care for everyone.4 ePatient Dave posted a beautiful tribute to her there.Casey is in a “mets party” due to a reoccurrence breast cancer years ago. She has recently opted for hospice and is being well cared for by family and friends. One of her messages to us as she comes to the close of her life: Not quitting till I'm deadIt's just, the things I've learned in the journey and this year has been a never-ending journey. This learning as I am getting ready to depart from my birthday dinner is cancer can't kill me yet. I have too many problems to hack fix in healthcare. So, f**k cancer, I'm not done, and I'm not quitting until I'm dead.And then I want you all to carry me off the battlefield on my shield and then keep fighting. Because that's the only way we're going to hack this universe into a more human-friendly place.5Casey is an exquisite writer and communicator. Her words will echo in us for ages. I am particularly empowered by this statement from her, and keep it as one of my guiding lights, “You already know where I stand. Trust people to be savvy enough to ask questions. Help them understand what they need to know to fully participate. Lather, rinse, repeat—because we're all in this together.”6For a wonderful glimpse of Casey in living color, check out this wonderful mashup Danny van Leeuwen of Health Hats put together (https://health-hats.com/pod193/).Casey, I am not ready to have you leave the battlefield, and still I will honor your wishes—carrying you off on your shield and continuing to fight. I hope this inspires other to join us. I am reminded of Mary Oliver's question: “Tell me, what is it you plan to do with your one wild and precious life?” I ask the reader, can you push the envelope a little more for data sharing, for collaboration, and for taking the risks we need to accelerate better health for all?Casey Quinlan died on April 25, 2023. With hope that she has joined with all of the other warrior women.References1. TED: Science Didn't Understand my Kids Rare Disease Until I Decided to Study It. Available from: https://www.ted.com/talks/sharon_terry_science_didn_t_understand_my_kids_rare_disease_until_i_decided_to_study_it?language=en [Last accessed: April 13, 2023]. Google Scholar2. Nguyen S, Terry SF. Free the data: The end of genetic data as trade secrets. Genet Test Mol Biomarkers 2013;17(8):579–580; doi: 10.1089/gtmb.2013.1547 Link, Google Scholar3. Quinlan , Casey. Selling my health data? CUT. ME. IN. BITCHES. September 19, 2017. Available from: https://medium.com/@mightycasey/sellingmy-health-data-cut-me-in-bitches-447880201004 [Last accessed: April 13, 2023]. Google Scholar4. deBronkart , David. In hospice, Mighty Casey receives SPM's “Doc Tom” Award. March 28. 2023. Available from: https://participatorymedicine.org/epatients/2023/03/in-hospice-mighty-casey-receives-spms-doc-tom-award.html [Last accessed: April 13, 2023]. Google Scholar5. Danny van Leeuwen. Normal, a Dryer Setting with Mighty Casey Quinlan #139. August 21, 2021. Available from: https://health-hats.com/pod139/ [Last accessed: April 13, 2023]. Google Scholar6. Quinlan , Casey. Shift Happens if You Let It. Available from: https://www.opennotes.org/news/shift-happens-if-you-let-it/ [Last accessed: April 13, 2023]. Google ScholarFiguresReferencesRelatedDetails Volume 27Issue 4Apr 2023 InformationCopyright 2023, Mary Ann Liebert, Inc., publishersTo cite this article:Sharon F. Terry.A Mighty Mouth for Data Sharing.Genetic Testing and Molecular Biomarkers.Apr 2023.121-122.http://doi.org/10.1089/gtmb.2023.29068.perspPublished in Volume: 27 Issue 4: April 28, 2023PDF download