Q&A: A New Tool for Ensuring Genetic Privacy

Gamze Gursoy and Mark Gerstein of Yale Medical School have developed a strategy for stripping identifying variants from functional genomic data, balancing privacy with utility.

Written byAmanda Heidt

| 6 min read

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Q&A, functional genomics, genetic privacy, bioinformatics, data science, Yale School of Medicine, Genetics & Genomics

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The appetite for data on individuals’ genetic sequences is growing, both from consumers—the number of testing kits sold by leading companies such as 23andMe and Ancestry.com topped 26 million by the start of 2019—and from scientists looking to amass large datasets for medical research. In addition to whole genome sequencing and genotyping, in which scientists identify a person’s genetic variants, new functional genomics tools such as RNA-seq, ChIP-seq, and single-cell sequencing have led to an exploding number of tests detailing how people (and their individual cells) respond to environmental conditions, medications, or disease.

But as more and more people volunteer their information, the seemingly anonymized data that results from such tests is becoming a target for hackers looking to glean sensitive medical information. In particular, the many genetic variants that make each person unique can be used to identify them as surely as a fingerprint, revealing ...

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Meet the Author

Amanda Heidt
Amanda first began dabbling in scicom as a master’s student studying marine science at Moss Landing Marine Labs, where she edited the student blog and interned at a local NPR station. She enjoyed that process of demystifying science so much that after receiving her degree in 2019, she went straight into a second master’s program in science communication at the University of California, Santa Cruz. Formerly an intern at The Scientist, Amanda joined the team as a staff reporter and editor in 2021 and oversaw the publication’s internship program, assigned and edited the Foundations, Scientist to Watch, and Short Lit columns, and contributed original reporting across the publication. Amanda’s stories often focus on issues of equity and representation in academia, and she brings this same commitment to DEI to the Science Writers Association of the Rocky Mountains and to the board of the National Association of Science Writers, which she has served on since 2022. She is currently based in the outdoor playground that is Moab, Utah. Read more of her work at www.amandaheidt.com.
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