Definitional clarity and “data governance”
Open Reading Frame
by sarahcn
3y ago
A precocious playmate One of my close friends growing up used a lot of big words. My vocabulary was decent, but with her I was often outpaced. I distinctly remember one time in third or fourth grade when I was at her house playing and she dropped one of her vocab words. I wish I could remember the exact word (I want to say it was something ironic, like “precocious”), but this time I decide to swallow my pride: “What does that word mean?” Her, unphased: “Oh, I don’t really know.” And then we both shrugged and moved on. Though we didn’t dwell on the moment together, my little mind was blown: usi ..read more
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My experience with identity theft and the case for adaptive governance
Open Reading Frame
by sarahcn
4y ago
The saying goes that imitation is the sincerest form of flattery, but when it comes to identity theft — this could not be further from the truth. I dealt with a mild smattering of identity theft in the spring of 2018 and then, more recently, with a veritable deluge of it. Bank accounts I didn’t open, credit cards I didn’t apply for, fraudulent information on my credit report (former employer Goldman Sachs – are they trying to be cute?!), etc.. What I used to assume was junk mail and destined straight for the recycle bin I now must open and steel myself for news of another account or card fraud ..read more
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Data ethics: risk- versus respect-based concerns
Open Reading Frame
by sarahcn
4y ago
Personal data. We walk around emitting little streams of it, from our browsing history and smartphone apps to our credit card purchases. Most of the time we don’t even think about it — it’s become as a natural and invisible a process as shedding skin cells. Meanwhile, various entities are out there hoovering up all our data streams and aggregating them for various types of advertising, product development, and research. It may be irksome when we stop and think about it, but we ultimately allow most of it in exchange for the convenience of using various products and platforms. Then something go ..read more
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When “good enough” is great
Open Reading Frame
by sarahcn
4y ago
My tolerance for imperfection is perhaps most apparent in the kitchen. My friends and family joke about my laxness with recipes and lack of respect for key ingredients — most recently, when I persevered in making a chili without any chili powder. (Surely, paprika with some cayenne would do the trick?) The end product often isn’t half bad and, even more importantly, I have dinner. Sure, I sacrifice some perfection along the way, but it’s worth it to produce something when the alternative is…likely…nothing (or takeout). The “good enough” mantra There’s a common idea in graduate school that one s ..read more
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Genetic “Mesearch”
Open Reading Frame
by sarahcn
4y ago
Personal genomics Personal, consumer genomics has exploded in the past decade, and shows no signs of slowing. Yet there is an inherent tension in attempts to translate the findings of genetic research, which is done in large groups of people, into insights for individuals. I.e., the research question, “Does this genetic variant, or set of variants, occur more often in people with heart disease than those without?” does not map comfortably onto the related question, “If I have this variant(s), will I get heart disease?” Direct-to-consumer (DTC) testing companies rely on this type of mapping bet ..read more
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In support of anticipatory scholarship
Open Reading Frame
by sarahcn
4y ago
Last week, a fellow PhD student and I were remarking how our dissertation topics have been tying into current public and academic discourse. Whether it’s media coverage or peer-reviewed literature, we’re seeing our areas of study get a little deserved time in the limelight. I said that’s why we do what we do: anticipatory scholarship. What do I mean by anticipatory scholarship? Image source: https://vimeo.com/34611368 I blurted out that term in our conversation, and have since been reflecting on it. What is anticipatory scholarship and why is it important? I think of it as researching a topic ..read more
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Do third-party genetic analysis tools interpret data, or simply “bridge to the literature”?
Open Reading Frame
by sarahcn
4y ago
A variety of third-party genetic interpretation tools are available online that enable users to pursue self-directed analysis of their personal genetic data. Tools can return information about health/wellness, family relatedness, or genetic ancestry. While users may seek out these tools for help interpreting their data, some developers describe tools as providing a “bridge to the [scientific] literature,” rather than interpretation. What could you do with a file of your genomic data downloaded to your hard drive? Ten years ago this question would have made little sense, but now that millions o ..read more
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The decline in editorial function, from newsrooms to genomes
Open Reading Frame
by sarahcn
4y ago
Conspiracy theories have always been bad, but are they getting worse—more pervasive, more outlandish, more polarizing? I recently heard the authors of the new book “A Lot of People Are Saying: The New Conspiracism and the Assault on Democracy” interviewed on John Lovett’s podcast. One enabler of the “new conspiracism,” according to the authors, is the decline of editorial function. In a classic newspaper sense, editorial function refers to the role of editors and other content moderators who decide what to publish, considering the cost of printing every inch of column space. Not every story id ..read more
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Coronavirus, scientific expertise, and knowledge infrastructures
Open Reading Frame
by sarahcn
4y ago
Coronavirus news is dominating our mental and physical airwaves – I for one have eyes glued to virologists’ Twitter feeds and am constantly refreshing the Seattle Times daily updates. Scrolling through tweets the other night (I have self-diagnosed “Scrolliosis”), I saw a fascinating exchange in the comments. My favorite computational biologist, since that’s a thing we have now, was posting some coronavirus stats when a commenter asked for someone, “in English please,” to explain the way he was presenting the numbers: Excerpted Twitter exchange about coronavirus, March 6, 2020 The commenter’s h ..read more
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Year in review for third-party interpretation tools
Open Reading Frame
by sarahcn
4y ago
The personal genome travels through 2019. Image credit: Pixabay, with modification As 2019 comes to a close and I reach the year anniversary of completing my dissertation research on the topic, it felt appropriate to do a mini year in review for third-party genetic interpretation tools. There’s been a whirlwind of activity in this area, perhaps no surprise due to the of entanglement of third-party tools with two other rapidly evolving areas: direct-to-consumer (DTC) genetic testing and human genetic research. In some ways, this past year has seen a further blurring of boundaries between these ..read more
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