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Here’s an interesting call for papers for citizen scientists by the journal Narrative Inquiry in Bioethics published by Johns Hopkins University Press.
The editors want first person accounts of ethical issues in citizen science. I’ve been part of many discussions of whether QS is part of citizen science. There are some key differences. The most important reason not to think of QS as citizen science is that most QS projects are not designed to contribute to research problems in a scientific discipline. Instead, they are meant to answer one person’s question. The answer may be interesting to science, it may even make a novel contribution, but the disciplinary nature of science, and the non-disciplinary nature of QS, is a distinction too important to ignore. And yet, with all that said, I still think this call for papers is interesting to disseminate.
First: I know that many people who do QS projects face interesting ethical questions, and some of the thinking associated with this work might be interesting in the more institutional context of citizen science. And second: there are an increasing number of QS projects that take place among small groups; while each person has their own reason to participate, the social nature of the projects brings them closer to the kind of group research typically done by citizen scientists. I’m curious about the ethical issues of doing group projects, and I’d like to know how others are handing them. For the Bloodtesters group that I helped organize, we ended up using a process of ethical reflection we called – only somewhat tongue-in-cheek – “self-consent.” What have you done?
The full call for papers is here: Narrative Inquiry in Bioscience
Narrative Inquiry in Bioethics will publish a collection of personal stories from individuals involved in citizen science research. Citizen science is a growing area in which the lay public is involved in research in dynamic and important new ways. This enables new questions to be asked, new methods to be pursued, and new people to contribute, often without the usual oversight provided by institutions and funding agencies. Citizen scientists do environmental research, animal research, human research including clinical trials, identification of photographs, or collect other data.
This movement has implications for traditional science and for human participants in trials run by citizen scientists. Among some of the most challenging and interesting are the ethical implications of this new scientific research.
We want to collect true, personal stories from citizen scientists and those who contribute to citizen science. Please share this invitation and guide sheet with appropriate individuals. In writing your story, please consider one or more of these questions:
- What does citizen science enable that conventional research approaches do not?
- What unique challenges have you faced doing citizen science?
- What ethical issues have you confronted in the conduct of the research?
- Were you able to use existing frameworks (such as Institutional Review Boards) to resolve them, or did you approach resolving the ethical issues in a new way?
- What advice would you have for individuals who are considering conducting their first citizen science project?
- What advice would you have for those who seek to regulate citizen science?
Environmental disruption of the circadian rhythm can lead to altered metabolic function, while modern lifestyles lead people into asynchrony between external time and internal phasic time. The disruption of circadian rhythm and altered metabolism can lead to an increase in obesity, diabetes and other life threatening metabolic disease. This review by Reinke and Asher provides an overview on how the gastrointestinal tract and the liver are under circadian modulation, focusing on the circadian role in metabolism and degradation of lipids, bile acids and cholesterol.
The body’s circadian clock is regulated by a master pacemaker in the superchiasmatic nucleus (SCN) in the hypothalamus, which receives it’s time cues from light exposure through the retinahypothalamic tract. Secondary pacemakers in peripheral organs, such as the liver, get their cues through energy sensing systems like AMPK and metabolic feedback loops, making these clocks extremely responsive to metabolic cues and feeding behaviors. Reinke and Asher state that the peripheral clock within the liver can be efficiently entrained by an individual’s fast/feed cycle to the point of being completely separate from the master rhythms generated by the SCN (Fig 1.).
Fig. 1. The master clock in the SCN synchronizes with geophysical time using light cues and temperature cycles; it communicates this information to peripheral oscillators, including the liver clock, which regulate the cyclic expression of rate-limiting metabolic enzymes. The bile acid metabolism, cholesterol biosynthesis and lipid metabolism cycles are of key interest to us in the blood tester group (Rienke and Asher, 2016).
The liver clock is largely responsible for buffering the circadian fluctuation of blood glucose and cholesterol in response to an individual’s eating habits. The conversion of cholesterol to mevalonate acid by HMGCoA reductase (Hmgcr) has been known to be circadian clock regulated since groundbreaking work by Shapiro and Rodwell in 1969. Panda et al. expand on Shapiro and Rodwell’s work by demonstrating that many key enzymes in the cholesterol pathway exhibit coordinated expression; Enzymes responsible for cholesterol biosynthesis like Hmgcr peak during the night, when dietary cholesterol is low, and enzymes of cholesterol degradation are expressed evenly at different times of the day (fig. 2B and 2C).
Fig. 2. A) An overview of the cholesterol biosynthesis in mammals. The liver is responsible for both the synthesis and degradation of cholesterol, which it breaks down into different hormones and bile acids. B) Expression pattern of enzymes (including Hmgr and Npc1) involved in cholesterol synthesis. **X-axis represent hours after first subjective dawn.** C) The degradation products of cholesterol, bile acids and hormones, are produced evenly throughout the subject’s day (Panda et al., 2016).
The circadian rhythm regulates many aspects of hepatic lipid metabolism; conversely dietary lipid intake and feeding behaviors can act as a potential regulators of circadian rhythm (Reinke and Asher, 2016). A recent lipidomic analysis of WT mice and CLOCK ko mice (CLOCK being an essential transcription factor in the peripheral oscillatory pathway that generates circadian rhythm) demonstrated that CLOCK ko mice had significantly different blood lipid composition and circadian phase shift (Adamovich et al. 2014).
The liver is the primary organ responsible for converting cholesterol into bile acids which aides in the digestion and absorption of fats and oils. Cholesterol is primarily degraded into bile acids by the rate-limiting enzyme CYP7A1. The transcription of this enzyme relies on a molecular cascade involving the bile acid receptor FXR and the promoter specific activator SHP (Lu et al. 2000). Recently, Le Martelot et al. discovered a strong link between NR1D1, a transcription factor involved in the circadian circuitry, and transcription of CYP7A1. This demonstrates that the circadian clock acts as an additional regulatory force in cholesterol degradation, working alongside the molecular cascade (Le Martelot et al. 2009)
Adamovich, Yaarit, Rona Aviram, and Gad Asher. “The emerging roles of lipids in circadian control.” *Biochimica et Biophysica Acta (BBA) – Molecular and Cell Biology of Lipids* 1851.8 (2015): 1017-025. Web. Adamovich et al. review recent publications regarding lipid involvement in circadian clock research, as mounting evidence suggest that lipids are embedded within circadian clock circuitry in the SCN and the liver. Rapid technological advances has improved lipidomics methodologies which has shed new light on the interplay between circadian rhythm and lipid metabolism.
Lu, Timothy T., Makoto Makishima, Joyce J. Repa, Kristina Schoonjans, Thomas A. Kerr, Johan Auwerx, and David J. Mangelsdorf. “Molecular Basis for Feedback Regulation of Bile Acid Synthesis by Nuclear Receptors.” *Molecular Cell* 6.3 (2000): 507-15. Web. This paper demonstrates that the catabolism of cholesterol into bile acids is dependent on an autoregulatory cascade involving a triad of nuclear receptors:FXR, LRH-1 and SHP. Bile acid biosynthesis is dependent on the repression of rate-limiting enzyme, CYP7, which is modulated primarily by FXR, LRH-1 and SHP and secondarily by peripheral clock circuitry.
Martelot, Gwendal Le, Thierry Claudel, David Gatfield, Olivier Schaad, Benoît Kornmann, Giuseppe Lo Sasso, Antonio Moschetta, and Ueli Schibler. “REV-ERBα Participates in Circadian SREBP Signaling and Bile Acid Homeostasis.” *PLoS Biology* 7.9 (2009): n. pag. Web.
REV-ERBa, an important component of circadian clockwork circuitry, modulates the rhythmic metabolism of cholesterol and bile acid biosynthesis in the liver. Previously it was believed that dietary cholesterol was the primary trigger for bile acid synthesis. However transcriptome profiling experiments with liver RNA from WT mice, REV-ERBa ko mice and REV-ERBa overexpressing mice found that REV-ERBa participates in the modulation of cholesterol metabolism. Most notably, REV-ERBa triggers the expression of CYP7A1, the rate-limiting enzyme in cholesterol catabolism.
Panda, Satchidananda, Marina P. Antoch, Brooke H. Miller, Andrew I. Su, Andrew B. Schook, Marty Straume, Peter G. Schultz, Steve A. Kay, Joseph S. Takahashi, and John B. Hogenesch. “Coordinated Transcription of Key Pathways in the Mouse by the Circadian Clock.” *Cell* 109.3 (2002): 307-20. Web. Conducted a large scale gene expression profiling experiment to identify key cycling transcripts involved in circadian rhythm. They found 650 cycling transcripts, of which a majority were expressed in SCN or liver tissue. Many major processes in the SCN and liver are regulated by circadian circuitry, highlighting the foundational role that the circadian clock plays in organismal physiology.
Reinke, Hans, and Gad Asher. “Circadian Clock Control of Liver Metabolic Functions.” *Gastroenterology* 150.3 (2016): 574-80. Web. Environmental disruption of the circadian rhythm can lead to altered metabolic function, while modern lifestyles cause people into asynchrony between external time and internal phasic time. The disruption of circadian rhythm and altered metabolism can lead to an increase in obesity, diabetes and other life threatening metabolic disease. This review provides an overview on how the gastrointestinal tract and the liver are under circadian modulation, focusing on its role in lipid, bile acid and cholesterol metabolism and degradation.
( Not cited in this blurb, but these articles are also great!)
Storch, Kai-Florian, Ovidiu Lipan, Igor Leykin, N. Viswanathan, Fred C. Davis, Wing H. Wong, and Charles J. Weitz. “Extensive and divergent circadian gene expression in liver and heart.” *Nature* 417.6884 (2002): 78-83. Web.
Wang, F., X. Zhang, J. Wang, M. Chen, N. Fan, Q. Ma, R. Liu, R. Wang, X. Li, M. Liu, and G. Ning. “LGR4 acts as a link between the peripheral circadian clock and lipid metabolism in liver.” *Journal of Molecular Endocrinology* 52.2 (2013): 133-43. Web.
The book discussed in this post is Making Time: Lillian Moller Gilbreth — A Life Beyond “Cheaper by the Dozen”.
When we repurpose tools of science and management for distinctly personal ends, we’re extending a path laid down for us by many ingenious predecessors. I want to take advantage of the last hours of the day to honor one of the greatest early biometricians, Lillian Moller Gilbreth, and to revive a question posed, at least implicitly, by her work.
Gilbreth began her career in the early part of the last century as a disciple of the founder of scientific management, Frederick Taylor. Even before she got her PhD, she was doing time motions studies with her husband Frank Gilbreth with the aim of improving worker efficiency. Frank Gilbreth died in 1924. By the time Lillian died, in 1972 at age 94, she’d taken what began as Taylorist dogma and turned it into a practice of close observation and participatory learning that almost turned it on it’s head. Instead of seeing human beings as a factor of production, to be exploited like any other resource until worn and replaced, she asked about the human factor in production: what was work for, what were its conditions and benefits, and how could it be improved.
Gilbreth was very well known in her day, so she’s easy to learn about and there’s no need to crib from sources you can consult yourself. Perhaps my favorite biographical detail is that, after being denied a PhD in 1912 by the University of California, Berkeley because her family and business responsibilities prevented her from being on campus during the last year of her studies, Gilbreth published her research as a series of articles in Industrial Engineering and Engineering Digest, and then as a book, and then just went ahead and got a PhD from Brown. Although it’s quite something to become a towering figure in a new field, developing many novel research methods, and it’s of course no small honor to be a member of the National Academy of Engineering (she was the first woman elected), my academic friends will surely bow in awe before somebody who deals with a recalcitrant and small minded graduate department by marching off to a competing school and writing a second dissertation.
She was like that all her life. Jane Lancaster’s biography of Gilbreth, Making Time, gives a sympathetic but critically aware portrait of a person who embodied, challenged, compromised with, exploited, and suffered from conflicting ideals and demands of women’s work. Gilbreth made her living consulting for corporations, especially those whose employees and customers were women. She was a key link between scientific management and consumer culture, taking techniques developed for studying workers on the shop floor and applying them to home life. In 1927 she wrote a practical guide called The Home-maker and Her Job, and for many years after she continued to do close observational studies and produced a nearly endless stream of advice for coping.
From today’s vantage point we easily see that increasing the efficiency housework didn’t bring about the general emancipation it promised. For many people, time saved washing dishes is lost to doing paid work at stagnant wages; while savings from the lower cost of manufactured goods is eaten up by the price of healthcare and childcare. The cheery scientism of late Victorian elites looks naive from a century’s distance; that is, when its unhesitant racism doesn’t make it simply revolting. Gilbreth, at least at the beginning of the century, hoped that “positive eugenics” could improve the human species. Lancaster doesn’t go very deeply into this side of the rationalist ethos, except to note that Gilbreth wasn’t in favor of sterilization or murder, instead believing that people of high intelligence should have as many children as possible. She lived her faith, giving birth to twelve, one of whom wrote a memoir, Cheaper By the Dozen, in which she is reduced to a feminine caricature.
You can read Cheaper By the Dozen and watch both of the movies made from it without learning any of the most interesting things about Gilbreth’s research. For instance, in 1926 she undertook an unprecedented study on menstruation and menstrual pads, for which she canvassed, Lancaster writes, “a long list of potential informants, ranging form the Women’s Bureau through the American Federation of Labor to gynecologists, prison workers, and laundries.” In the early 1930’s she launched a project involving over 100 interviews and 20,000 questionnaires collecting data on sex and age discrimination. Before Frank died, he and Lillian Gilbreth carried out some of the very first, and certainly the most thorough, studies of how people with disabilities can benefit from kitchens designed specially for them, and after he died she continued to advocate passionately for better design to support independent living. Paid by Macy’s to improve the efficiency of their cashiers, she went to work on the sales floor herself, coming to understand in an intimate way the different meaning of “tiredness” for women of different ages working for different reasons.
Gilbreth didn’t merely link scientific management to consumer culture through her research, she also embodied – through her seemingly supernatural productivity – it’s greatest tensions. Gilbreth was a non-conforming rationalist engineer, and a bourgeois advocate of domesticity. (She argued for what she called a “50-50 marriage” of shared domestic labor but backed down in the face of ridicule, paying at least lip service the idea of a woman’s sphere.) She spent a good part of her life addressing the problems of working women, while of course working herself, and yet her greatest public fame came from the “biological wonder” of her twelve children.
Gilbreth understood efficiency, and yet her work leaves us with a question: what does efficiency cost? The promise is mastery, sufficiency, ease of accomplishment, when unnecessary friction has been eliminated. Do things the “one best way” and look what you get: Two dissertations. Twelve children. A long shelf of original and useful publications. She made it look easy. But as Lancaster makes clear, the ease is an illusion. Automation and routinization works best under controlled circumstance, but controls fail, and someone has to clean up the mess. Gilbreth mainly cleaned her own messes, though not all of them. The book’s most provocative minor character is the man who worked for decades as her main domestic servant, Tom Grieves. He’s presented as grumbly but affectionate, a practical person with a cigarette always on his lips, doing dishes and straightening rooms, chasing children around, and generally needed to maintain the conditions of predictability required for rational management to function. Grieve’s comment on his employer’s obsession with efficiency was succinct: She was, he said, trying to “make it easy for folks to work hard.”
Gilbreth exposed the realities of women’s work both inside and outside the home, but always with the promise that good technique could lift the burden. The promise is still with us; but, then again why is it still just a promise? I think it honors Gilbreth’s legacy to keep asking this question, even as it takes us outside the domain of efficiency she pioneered.
On November 17th, the Bay Area and SF Meetup groups hosted QS Show&Tell talks at WeWork Mid-Market. Thank you to everybody who came and presented. We saw some brilliant talks, including one about tracking during pregnancy with data challenging common, supposedly scientific pregnancy advice, and a talk outlining a fascinating self-study of bruxism (teeth grinding) based on a DIY wearable sensor to capture muscle tension and an infrared camera filming all night. We also had a crew from National Geographic documenting the evening for a short show they are making about Quantified Self. Here are links to some of the talks!
Mark your calendar for our next All Bay Area QS Meetup on January 26th, 2017 at the Wells Fargo Room located at UC Berkeley’s Haas School of Business. Just let us know when you sign up if you want to present.
We recently announced that we’re collaborating several other editors to edit a special “focus theme” on N-of-1 experiments for the established informatics journal, Methods of Information in Medicine.
Here’s an extract from our justification for the call:
Scientific progress in medicine and public health during the last century has been dominated by studies performed with groups of people. Today many people collect data their own data to help investigate a health problem, make progress towards a goal, or simply because we are curious. Such investigations need not be conducted on groups. Often, they involve just a single person who is both the subject and the investigator. They are “N-of-1” trials, where data are generated by the individual, normally making use of self-quantification systems, including mobile apps and portable monitoring devices. This focus theme of “Methods of Information in Medicine” on single subject research encourages submission of original articles describing data processing and research methods using a “N-of-1” design where the questions and analysis are guided by the interests and participation of the subject. We encourage submissions that focus on challenges and questions involving data collection, processing, integration, analysis and visualization in the context of single subject research.
AREAS OF FOCUS MAY INCLUDE, BUT ARE NOT LIMITED TO:
Personal health and well-being * Chronic disease management * Mental health * Autonomous self-experimentation in the context of health and well-being * Health education and autodidactic learning * Privacy, ethics and regulation issues
In this final talk from the QS Public Health Symposium, we asked two leading advocates for a culture of health to help set an agenda for our movement over the next year. Bryan Sivak is the former CTO of the US Department of Health and Human Services, and Lori Melichar is a director at the Robert Wood Johnson Foundation.
Bryan took the opportunity to specifically address a challenge to the industry. “The hardware manufacturers have to become more open with their algorithms and tools,” he said. “We’re never going to get to the right place in this universe unless we work together in certain ways, in a competition mode.”
And take note all of you with a data access project: Lori specifically invited you to apply to the foundation for support, saying: “We have an open application process and we want to hear your ideas.”
Please get in touch with us if you’d like to participate in 2016. Space is limited.
Watch Bryan and Lori’s talk on Medium.
“We don’t regard our lead users as hackers or adversaries. Diabetes is our common enemy.”
Nate Heintzman is a member of the research and development team at Dexcom, makers of the leading continuous glucose monitor for people with diabetes. The Nightscout project of DIY liberation of CGM data specifically targets the Dexcom CGM. This could be perceived as a threat. But in this talk, Nate explains why Dexcom has decided to treat its lead users as collaborators, even when their ingenuity, advocacy and inspiring impatience leads them to step beyond regulatory and business frontiers.
Watch Nate’s talk on Medium.
“Patients are doing experimentation every day just to live with their disease.”
Joyce Lee is a pediatric endocrinologist at the University of Michigan and a leader in developing methods of collaborative clinical research with patient communities. Her current focus is on learning from the participants in CGM in the Cloud, an online group that supports participants in a remarkable DIY data project called Nightscout. Nightscout and CGM in the Cloud help people flow their blood glucose data out of their monitors so they can do new things with it, such as set special alarms or share the data remotely with caregivers.
Here, Joyce describes why patients, and patient communities are leading the way in the development of new kinds of science, experimentation, and models of communicating knowledge.
Watch Joyce’s talk on Medium.
“Advocate for yourself. You should get to choose who you share your data with, who gets to see it, and if you want to donate it to research.”
Howard Look is the founder and CEO of Tidepool.org, a non-profit open source effort to build better software for diabetes. He became a leading advocate for access after his daughter was diagnosed with type 1 diabetes in 2011. Like many parents of children with diabetes, Howard went from knowing almost nothing about the disease to having to help manage it every day. Diabetes, he came to realize, had a serious data problem. Most of this crucial, life-saving data was locked on devices that wouldn’t let patients effectively use it. In this talk, Howard describes the role of Tidepool and the larger challenge of opening up diabetes data.
Watch Howard’s talk on Medium.
From the Quantified Self Public Health Symposium
“I didn’t want to wait. I don’t want to die in my sleep. We are patients who are not waiting.”
Dana Lewis became a reluctant self-tracker at the age of 14 when she was diagnosed with type 1 diabetes. Dana and her partner Scott Leibrand have been developing a DIY artificial pancreas that is built on top of the data flows from Dana’s continuous glucose monitor. In this talk, she describes the role that access to data plays in the DIY pancreas, with immediate and profoundly positive effects on her life.
Watch Dana’s talk on Medium.