One that’s been flying around the internets today is the Maria Konnikova piece on Salon. I’m actually not terribly fond of this piece, or other pieces that hinge their complaint on the cost of testing and Jolie’s supposed privilege by virtue of her wealth. For one, let’s put the cost of testing squarely where it belongs: on the fact that Myriad owns the patent for the test (something that is being challenged in front of SCOTUS this June).

Secondly, almost no one remembers that the Affordable Care Act considers BRCA1 and BRCA2 tests to be part of preventive care, and that by January 2014, it must be covered for everyone, period. Yes, the pre-existing condition limitations and grandfathered insurance clause limitations means some women won’t have coverage for the test between now and January, but it’s not the doom and gloom exclusionary process that seemingly everyone wants to focus on when it comes to cost.

Finally, and most importantly, the notion of reducing stigma and shame by simply talking about these things – and in Jolie’s case, taking ownership of a body that has been extremely sexualized in media and popular culture – is incredibly important. In particular, even though we’ve moved society to a point where people talk about breasts and cancer together, it’s still in a “race for the cure” dialog, rather than in mastectomies and surgeries and things that shame. For example, within a day of Jolie going public about her mastectomies, Zoraida Sambolin (CNN) announced her own breast cancer and the mastectomies she’ll be having in June – and she credits Jolie for her decision to go public with her own health concerns.

This is dialog that’s important. It continues to de-stigmatize and remove shame from very basic aspects of women’s biology, and doing so is only a good thing: we need people to be able to talk openly and honestly about medical issues, illnesses, and diseases that affect women, not just men, and the sooner we can normalize aspects of the dialog that include frank discussions of biology and body parts in non-sexualized terms, the sooner we can embrace the idea that a woman – and her sexuality – is more than her breasts.

Of course, tomorrow there will be another bombing somewhere else – probably not America, but does that matter? There will be another murder spree, somewhere; after all, doesn’t the FBI believe there are something like 30-odd serial killers working in America at any given time? There will be another massive traffic accident, there will be another mass casualty event, another epidemic, another something new and breaking, because in the era of 24 hour news, something is always new, something is always breaking.

So at what point, then, is it okay to make noise about the lack of investigation into a publicized, bragged about, distributed images of, rape of a teenage girl? A rape that was dismissed as a community concern, that wouldn’t be investigated or prosecuted, that led to a young woman’s death? When is it the day we get to talk about that? At what point is this violence against a woman, and the dismal response to it, allowed it’s time in the media sun?

A continued and on-going problem with violence against women is that it is de-prioritized for other news. Women, after all, are always being raped. Always being murdered. Always victims of domestic violence. The bleeding that happens simply isn’t newsworthy enough to lead; it’s too common.

And the only way that changes is to acknowledge that it is, indeed, possible to care about and advocate for and discuss multiple things at once. That a story doesn’t need to be dropped just because a new and shiny one comes along, that it is indeed possible to follow multiple ideas and have many concerns, and that in particular, news of violence and rape and suicide isn’t so low a priority that it cannot even be tweeted until a “more urgent” situation has passed. In fact, I can, as a matter of course, be incredibly worried about friends who were at the race today and yet still care deeply about the mistreatment of Rehtaeh Parsons. I have this ability, and I believe that you do, too.

You’d never run a marathon with pneumonia, but a man with CFS needs to, because expending all that additional energy will make his problems go away?

You hear someone say that their life is awful. You hear them say that they’re in pain. You hear them talk about the medications, the doctor’s appointments, the flare-ups, the feeling of never being able to escape. You hear these things and you say “laziness”, but it never occurs to you that your own illnesses- a cold, the flu- make everyday tasks difficult- difficult enough that, quite often, you will complain about being sick and sometimes even skip out on obligations so you can rest up.

You hate being sick.

Admittedly, this was already on my mind, as this morning the fiancé¹ and I were talking about some general goals and ideas of accountability, and he asked me to talk a bit more about how exercise can be a challenge with my chronic pain.² For the first time, I really had to think about the activity level that I held myself to as “the standard:” I was at one point doing yoga and pilates twice a week each; going to the gym three times a week; hiking and walking all over the University of Washington campus; and going dancing several times a week.

I’ve failed to meet anything even nearing that level of activity since I left Seattle, though, and it’s been discouraging for a number of reasons. Exercising hurts, aggravating my chronic pain. I know I need to do this, but I don’t like being in pain, so it’s a disincentive. The fiancé listened to me complain a bit, and then asked a question that led to a lot of coins dropping all at once: he asked if, after a period of time, I’d “break through” and reach a point where exercising didn’t hurt, like most folks do when they’re just getting in to shape.

And I realized that I? Do not know. Today is really the first time I put together the other half of that equation: I was able to be that active while at UW because I was on a cocktail of medication that managed and controlled my pain. While dosing and makeup varied and was continually being adjusted, during most of this period of time, I was taking: 120mg XL morphine a day; 8-10 vicodin as needed for breakthrough pain; anti-nausea medication; two different anti-depressants to help boost the effectiveness of the painkillers; and a rotating schedule of sleeping pills. Not infrequently, this would all be topped off with an anti-anxiety medication (useful for tests and doctor appointments, which were almost always full of pain). So yes, no wonder it didn’t hurt to exercise – I had done a very good job at stripping away the pain.

It’s a bit weird and a bit of a relief to see that I’m actually not a failure or weak for not being able to live up to that standard of the past; I’ve managed to largely stop taking all medications for my pain (with exception of the occasional vicodin or high dose of Advil), but this also means I need to re-evaluate what I can and cannot do, and stop holding myself to a standard that I was only able to meet due to prescribed medications.

It is a strange shift in belief and concept of self, if nothing else.

1. Oh yeah – hey, I got engaged! I guess that didn’t make it on to the blog, although it hit Twitter and I assume most of you read this from there.
2. Sappiness alert! One of the many reasons I love him: he has taken the time to ask and learn about limitations and range and how life can be impacted by living with a chronic illness, and I’ve never once felt like this was anything other than an effort to get more knowledge so that he can do his best to support and encourage me.

Older woman: Have a blessed Easter, celebrating his risen son!
Me: *blinks* Thank you.
Older woman: What church will you be celebrating at on Sunday, dear?
Me: Ah, -
Older woman: Oh, *grabs my arm* you must come to [her house of worship]!
Me, as I extract myself from her grip: Thank you, ma’am, but I’m a practicing Buddhist. I hope you have a lovely weekend and holiday!

…and I walked off, thinking that was it. Silly, silly me.

So one of the things I bought this evening was a package of paper towels. Trader Joe’s will ring this up, then place it back in your cart – fine, I had a bag to shove it in once I was outside of the growing madhouse that was the store before Easter. The cashier was wheeling my cart around to me while I paid, when out of nowhere, the older woman I had helped and had the above conversation with, who was apparently in line behind me, reached out, stopped the cashier, and loudly said “make sure she pays for that,” tapping on the paper towels. “Her kind are thieves!”¹

I was busy seeing how far I could tilt my head to one side, so the cashier beat me to responding, calmly noting that she had rung up all of my purchases and gently pushing past the older woman – who gave me an utterly venomous look as I walked out.

Ah Jesus. You’re a relatively cool dude, but man, we need to chat about some of your followers.

* Well. Okay, there are a lot of stories about reformed thieves. And then there are some rather…special monks, in all the various lineages. But as a general rule of thumb, thievery is frowned upon.

1. I know that at least one person, who hasn’t met me or tracked down photos, is going to assume that given this response, I must be a person of color and wrongly attributing the older woman’s malice. Nope – I am a ghostly pale, blonde, green-eyed, tall Nordic woman.

Most of us aren’t Karen Bartlett, who suffered a rare side effect of NSAIDs when she took sulindac: toxic epidermal necrolysis. Aside from the extreme trauma of seeing your skin shed off you like wet tissue, Ms. Bartlett suffered permanent damage to her esophagus and lungs, and was left legally blind.

Rather understandably, Ms. Bartlett sued the manufacturer of sulindac, Mutual Pharmaceutical Company, the manufacturer of the generic formulation she took. She argued the drug design was defective and dangerous, and she won both the case and the appeal. Mutual Pharmaceutical Company, apparently attempting to live up to the reputation of pharmaceutical companies everywhere, has continued to appeal the decision against them, and this month the Supreme Court of the United States will hear the case.

At crux, Mutual Pharmaceutical Company is arguing that because they have no control over the design of the drug, they are not liable for any injuries sustained from taking it; they say this is the same as a recent SCOTUS ruling that does not allow patients to sue generic manufacturers for warning labels, as the company has no control over that information.

The problem I have with this argument is that we know that this is patently false. In October of 2012, the FDA removed approval of Budeprion XL 300, a generic version of Wellbutrin XL 300 manufactured by Impax and marketed by Teva. Why? Because their formulation was not therapeutically equivalent, and likely never had been.

The Impax/Teva Budeprion XL 300 was approved in December 2006; given that 80% of prescriptions filled in the United States are generic, it’s safe to say that quite a few generic prescriptions for Wellbutrin XL 300 were filled in that time. Almost immediately, the FDA began receiving reports that the generic form of the drug was not therapeutically equivalent; patients experienced reduced efficacy. Reduced efficacy is a polite way of saying that patients, many of whom were severely depressed, weren’t receiving any benefit from taking the drug, something I think we would all agree is a harm. And yet patients were taking this ineffective drug for six years, because the FDA was unable to quickly move to investigate the bioequivalence of Budeprion XL 300 to Wellbutri XL 300.

Clearly, generic manufacturers have the ability to change formulations, whether they should or it’s legal aside.

Generic manufacturers say that allowing juries to award damages to patients harmed by generics trumps the authority of the FDA, and the FDA is grudgingly siding with manufacturers on this. The problem here is that this argument presumes two things:

1. that the FDA always has all information regarding a pharmaceutical, something that Vioxx alone clearly indicates isn’t true;¹
2. that the FDA has the ability to move quickly to protect patients, something the Budeprion XL 300 example shows is not the case.

Lawsuits are one of the few ways it seems that patients have any ability to advocate for themselves – and, as Ms. Bartlett’s lawyer notes, force pharmaceutical companies to reveal information that they often take effort to squelch. Hopefully SCOTUS recognizes both the limitations of the FDA and the need to give patients a venue wherein they can hold manufacturers accountable for damages inflicted by the product they produce.

1. If you want to read more about pharma behaving badly, hiding clinical trial results, etc, check out Carl Elliott’s White Coat Black Hat and Ben Goldacre’s Bad Pharma.

Never read the comments. It’s an internet truism, at this point; I don’t know a single person who reads comments on unmoderated posts. And yet, sometimes, it’s hard to escape the comments, especially when the comments become the story.

Last week, the comments became the story, as Salon wrote about the internet blaming a photographer, an abused woman, apparently everyone possible except the abuser, for an incidence of domestic violence caught on film. Time reposted the photo series, originally made public in December, partly in response to Congress delaying VAWA, and the internet erupted. I’ve been a bit busy and distracted lately, so didn’t see the furor until about 30 minutes ago.

I started to scan the Salon article, shook my head at the proof one should never read comments, and clicked over to the Time article to see the photo essay. Within just a few clicks, I could see what was coming based on body language. And in just a few more, the documentation of abuse started and, to my shock, I felt bile rise in my throat as my stomach flipped and then flipped again.

“That was me, that was me, that was me,” whispers in my head, louder and louder, keeping time with the heartbeat I’m suddenly so aware of, the waves and swells of nausea as I cannot look away. I click through further, seeing Maggie thrown against a counter and for a minute everything swims and it’s not Maggie being thrown, it’s me, down a hall, against a wall, to the ground.

Clicking, clicking, and the officer is photographing Maggie’s bruises. The doctor is examining my knee, avoiding eye contact, ignoring the finger-shaped bruises on my shoulders.

“They never stop. They usually stop when they kill you,” the responding officer tells Maggie, trying to coax a statement out of her. At this point, the tears come – the gratitude that Maggie got a response I never did: someone called the police, and more importantly, the police took the steps necessary to reach Maggie, protect Maggie, get her out of that situation before it escalated further.

It escalates so, so much further.

The rhetoric with police departments has changed, and for the better. But for some reason, social rhetoric hasn’t changed, hasn’t kept up. Congress had to debate whether or not VAWA should be renewed, even though we know that one in every four women will experience domestic violence in her lifetime, and that most cases of domestic violence are not reported to the police because women don’t believe they will be believed, that the police can do anything to protect or help them, or that they have any other choice in life.¹ A third of female homicide victims were killed by intimate partners; in almost 80% of intimate partner homicides, regardless of who was killed, the man abused the woman before the murder.

I am in that one in four statistic. I was almost in that one-third statistic. The internet commenters would say that I deserved it – but no one deserves abuse. The internet commenters would say that I stayed because I liked it – but consensual BDSM is not the same as abuse. The internet commenters would say that I should have seen it coming, that it was my fault, that I made him do it, that if I wasn’t such a bad person,…

The internet repeats the words of abuse used by abusers, continuing to victimize those who have already been abused.

Most pervasively, there is this idea that you were abused because you did something to deserve it. Maggie deserved it for seeing someone while she was separated from her husband; I deserved it because he was older; Maggie deserved it because she had two children by the time she was 19; I deserved it because I left high school early; Maggie deserved it because she was poor; I deserved it because I didn’t live with my parents; Maggie deserved it because of all the reasons people try to use to justify abuse rather than confront the idea that people can and do abuse. People try to justify it to escape the idea that they could abuse someone, that someone they know could be abused. Not them, not me, not us.

Which is why, as much as I feel nauseated, as much as I want to run to the restroom and throw up, I think it’s important to stand up and be counted, to say “yes, her; yes, him; yes, me.”

When we judge those who are abused, who stay with their abusers, like Rihanna, we do more than just comment on figures who have made their lives public, by choice or celebrity. We comment to those one in four women around us, the ones whose bruises are hidden, whose abuse doesn’t leave a visible mark, and we devalue and degrade and ultimately dismiss their experience. We continue to create a society where escape is hard, and asking for help is harder. Where it is easier to face the idea of dying at the hands of the person who theoretically loves you than it is admit you didn’t just trip and fall because you’re just so damned clumsy.

There’s no quippy way to end this. I’ve sat here watching the blinking cursor hoping for inspiration, hoping for some way to sum up the idea of not being the kind of people who make those comments that continue to perpetuate a culture that accepts violence against women. Some creative turn of phrase to say stand up, don’t tolerate that kind of language amongst your friends, do your best to be the kind of person like Salon’s Jina Moore, or the unnamed police officer who convinced Maggie that her life was in danger and she needed to get out. But there’s no quippy way to write off the very real reality of abuse and death in America.

If you need help, please call the National Domestic Violence Hotline at 1-800-799-7233.

1. http://www.ncadv.org/files/DomesticViolenceFactSheet(National).pdf

For Nicholas.

I, as you most likely know, am a Buddhist. I am a very bad Buddhist: I drink, swear like a sailor, and until recently was a very happy ethical omnivore. I make my amends, though, and one way I do that is through routine meditation practice. As an offshoot of that, I have a lot of boddhisatva statues around my house. They’ve been on my mind lately – probably because, in the recent CLEAN ALL THE THINGS push, I’ve handled each of them to wash, dust, and reposition them.

From where I’m sitting on my bed, I can actually see four statues: a Green Tara, a Kuan Yin, a weeping Buddha and my yard gnome Buddha.¹ There are at least another two Buddhas in other areas of my home. And what struck me about them is that they all, with the exception of the weeping Buddha, are broken.

The Green Tara on my nightstand is missing a lotus and what looks like a naga. The Kuan Yin in my bathroom is missing a hand. Another is missing lotus petals. My yard gnome Buddha is probably the best example of this, though: during a move, many moves ago, he tipped out of the chair he was being carried in and the back of his head shattered across the ground. Concrete meeting concrete is never a pretty thing.

It was my ex-husband who dropped the yard gnome Buddha, and I very distinctly remember him bracing for what must have seemed like the inevitable explosion. That I stood there thinking for a moment, and then laughed, was certainly not the expected response.

Looking back on it, it was one of those moments. Everything slowed to a crawl as I watched the Buddha tip over and shatter, and then there was a bit of a sideways shift while practice clicked and tumbled in to place. The yard gnome Buddha became, in one swan dive, a very nice, very literal embodiment of non-attachment.

I’d like to say that since then I’ve reached some serene, zen-like state, closer to enlightenment, but the reality is I have my good days and the bad. I’d also like to claim that having a set of largely broken Buddhas decorating my house was an intentional choice, but instead it is more serendipitous. A reminder about how messy life is, and how broken we each are, and that life is often about finding the beauty in the broken, and the people whose shards match your own.

1. So named because I found him as garden statuary in a garden store.

Now, on the one hand, in a world where the People’s Sexiest list generates dialog for weeks, I can see why someone would think that the same should be done for scientists. And the other hand really appreciates the fact that the list was split 50/50, male and female. In the past, a list like this would have been invariably dominated by women; equal opportunity oogling FTW.

But the gripping hand. Oh, that gripping hand.

Business Insider is trying to cast this list of sexy scientists as some sort of outreach list – people who are sexy, who make science sexy. The problem is, it’s alienating as fuck. Suddenly, there’s one more area of life to be judged by looks rather than anything else, and for many people, especially many women, science has been a refuge where brains are what matter (or at least what matter first). Unlike many areas of life, in science, what you can do matters more than how you look.

Speaking from experience, starting at a young age, girls are pressured to conform to social norms about weight and appearance. I remember this vividly because I was always tall for my age, I am a natural blonde, and I hit menarche and puberty years before most of my classmates.¹ It was, in a word, hell. “You could be so pretty if” coupled with being different than my peers; kids are kids and they were vicious and cruel. My refuge, the place where what I looked like didn’t matter, was the science and computer lab, where my brain could run wild and free and I was judged based on how I thought and nothing else. I was judged based on what I could control, because I could learn the scientific method, I could research and I could form hypotheses; I could experiment and importantly, I could stretch my mind in a zone where my height just meant I could reach the top shelf of chemicals, where all that mattered about my hair was that it was pulled back, and what I wore and even what my body looked like was hidden by a white lab coat.

And I can imagine how I would have felt, at 12 years of age, had I come across a list like this, because I still feel twinges of it now, regardless of largely having shaken off cultural conditioning over the years. The women are so pretty, so successful, (so much younger!). Something I can never be. So why bother? Why bother at all, when brain is being judged in conjunction with body against an ideal I could only achieve through surgery (and how nice for people commenting on the Business Insider piece to note that’s an option).

We already know that low self-esteem negatively harms teen girls, and we’re starting to see more acknowledgement of how this damages teen boys, as well. Science, at least for the people I associated with (and still do associate with) was a refuge from the pressures and a place where our self-esteem could flourish, and we could be proud of ourselves for our achievements, not our ability to be the culturally-sanctioned right shape and size for our gender.

While I believe that Business Insider had at least some decent motive, in attempting to show that scientists can be “all kinds of people,” by only focusing on the exact opposite of the “dweeb scientist” image, the article only serves to spread the toxic notion that beauty is an important criteria for evaluating a person.

As Jacquelyn Gill ‏so succinctly noted on Twitter, “Highlighting “sexy” scientists doesn’t make science more accessible, interesting or relevant. It [merely] fetishizes some scientists as curiosity.”

1. “Amazon” was the politer name I was called. “Bazoonga Boobs” was much less polite, and sadly more common. I don’t recommend hitting bra size DD when you’re 12.

That concept, though, struck me.¹ Failure isn’t really something we celebrate, or even much encourage in society – and within both academia and writing, failure might as well be a four letter word. Maybe I feel this more acutely due to a variety of pressures, including frequently being labeled “one of the smart kids who’ll figure it out on her own” and the pervasive sense of impostor syndrome² stemming from the fact that I managed to fall into semi-professional writing without having to learn the ropes. But a lot of the process is opaque to me – while I seem decent at the first steps of networking, moving beyond that to the selling self point? No clue. (And there is some irony here, in that I’m really very good at connecting other people together. Perhaps I should ditch aspirations of writing and instead become an agent.) And more than the process being opaque, I’m not even sure who to ask to make it less – and the advice I have received has been quite similar to school: “oh you’re smart, you’ll figure it out.”

We could quibble all day over the first statement, so won’t – but there is pressure within the second half, the “you’ll figure it out.” Why? In some ways, it feels like it takes away the safety net of failure. The presumption – at least how I read it – is that this thing I’m wondering about, be it pitching or anything else, is so simple that I should have no problems figuring it out, and therefore I cannot fail. Since I’m not a surgeon or in some other lives-depend-on-me profession, the notion of not being able to fail is rather silly, but the idea that I cannot is, in itself, paralyzing.

And this isn’t the first time I’ve encountered it, and I’ve heard from friends in the humanities, social and “hard” sciences who’ve had the same experience. Their PI or advisor tells them to take care of X, it’s so simple – one friend was told that a chemistry lab was so simple a monkey could do it. And he sat in the lab for several days, unable to decipher what he needed to do, but terrified to ask for help because he should be smarter than a monkey.

I wonder what we’re losing, by not giving ourselves – especially those of us just starting out – the chance to fail, and learn from those failures? I remember that being a common mantra from my mother when I was growing up: try. If you don’t succeed, try again. Learn from your mistakes. At some point, though, the idea of learning from mistakes dropped away and was replaced with the idea that there simply cannot be mistakes.

One of the most important concepts in Buddhism is that of beginner’s mind, perhaps best summed up by the quote that “in the beginner’s mind there are many possibilities, but in the expert’s there are few.”³ This concept basically says that you should always remain open to the world, eager and without preconceptions, as a novice would be, rather than live within the world of expectations and boundaries that come when you are an expert. Children are the best examples of beginner’s mind, because they explore the world with an openness and creativity that isn’t bound up in fear of failure or acknowledgement of limitations.

My initial reply to Bora, that I just need to carve out some time to fail, was a joke, but the more I think about it the more I realize that it’s true. I need to carve out that time to try new things, and to fail and be rejected, to apply beginner’s mind beyond the meditation cushion and give myself permission to not be perfect on the first try, but instead learn from those experiences, dust myself off, and try (try) again.

1. Obviously, as I’m now nattering on about it here.
2. I know, I know, post-SciO13 post coming.
3. Shunryu Suzuki’s Zen Mind, Beginner’s Mind.

Instead, I got what reads as assault:

I’d certainly be interested in hearing how other people are reading this – I suppose it’s possible that in hanging around feminist communities, weird things have happened to my brain. But this commercial reads as a stranger – the solitary “geeky” young man – walking up to a woman he doesn’t know but longs for and sexually assaulting her. His punishment for this isn’t the prom queen shoving him off, but instead the prom king punching him – which certainly reads as “man defending property” rather than “hey asshole, don’t randomly kiss women without their permission.”

More than that, though, this Audi commercial – aside from the blatant assault – perpetuates this notion that the “nice” geek guy can “get the prom queen,” because her reaction is one of dreamy contentment at being grabbed and kissed without warning by someone she apparently doesn’t know, rather than horror, shock, or repulsion.¹ Instead, the “nice guy” gets what he wants – the girl, who, again, is treated as property through the entire commercial – by being “brave,” thus also reinforcing the Nice Guy trope that girls only dig “bad boys.” You know, like the bad boy who’d grab a girl and kiss her without permission (implicitly or explicitly given).

Shame on Audi for conflating bravery with sexual assault, and then attempting to use it to sell cars.

1. I’m tempted to go all lit crit on the symbolism behind the outfits being worn by the geek guy and prom king, as well.

Now, quite obviously, the idea that an institution is involved doesn’t mean there will be proper ethical oversight – all together now, Markingson! – but at least there are procedures in place, and if a scientist does want to initiate a citizen science project, there are review boards that will likely need to be involved. It’s when you get into DIY science that the question of regulated, ethical research following necessary minimum guidelines come into play. What happens when scientists – with degrees or otherwise – start doing research outside the scope of institutional review boards, medical ethical committees or institutional animal care and use committees? While there is a long history of researchers experimenting on themselves, there is an equally long history of vulnerable groups being taken advantaged of without proper ethical oversight. How does this history and experience dovetail with DIY scientists and researchers who are not a part of this narrative history, and may not have the experience – or ethical self-regulation – to know where to draw a line in the proverbial sand? While there are standards for traditional medical research – still too frequently violated – how are they, or should they, be applied to DIY science research?

And unfortunately, those doing DIY science, like the biohackers, as a general rule seem to fall under the “but we’re all doing good” naiveté that doesn’t see the dual threat of DIY science: that of a malicious agent, and that of a project with good intent but bad result. As was pointed out to me the other night, computer hackers didn’t initially start out with malicious intent, but these days, most folks equate hackers (rather than crackers) with malware and malice. I see no reason that an open-source biohacking movement wouldn’t also devolve into the same malware and malice we know is possible, if not actually plausible.³

While it’s easy to default to OMG HORROR MOVIE scenarios when talking about the life sciences, there are more practical concerns about the lack of connection to expected ethical oversights: when publishing on human or animal research, you do need to provide documentation on your appropriate ethical clearances, and many publications require a statement about ethical oversight as well as following the Declaration of Helsinki. Without having this, open source and DIY science projects are finding that, regardless of the strength of their data and research, they are unable to be published because they don’t have this sign-off on ethical approval.⁴

Of course, the most frustrating thing about discussing the lack of genealogy and narrative history with those who are interested in practicing and pursuing science outside of institutional oversight is that inevitably, the question of “what is the answer” comes up, and there is no answer, at least not yet. The cat is out of the bag, and anyone with a cat knows it’s just about impossible to shove back in – so, given that, what do we do? How do we address the issues of ethics outside institutional oversight? Whatever we do, ignoring it until we’re forced to because of government intrusion seems like a bad idea, but that’s about all I’ve got.

So how about you? What do you think? Hopefully some of you reading this will join me and Judy this afternoon, as well as continue the discussion beyond. Today, we’ll be using the hashtags #SciO13 and #ethics for the talk, and hopefully the conversation will continue on after – so please join us, and join in.

1. Note: I am willing to concede I am not familiar with them all, and would love to hear if you know of a genuine citizen science model that is not at all affiliated with any institution.
2. In particular, the question of who owns research and access to data is an interesting one, but even that can be somewhat easily dismissed by any forms of consent participants sign.
3. And bio-malware should terrify people much, much more than computer malware. There are a lot of horror novels around this idea. My favorite is probably from Richard Preston (yes, the non-fiction author), which talks about a guy making a new and horrible disease from moth pox, in his bathroom. Preston clearly worked from the DIY Science community, even back in the 90s when he wrote this, and the fears are just getting more realized, not less.
4. To make those of you who know your IRBs, there’s been discussion among some of the DIY science people to set up a DIY-IRB. I’m pretty sure my face looked like I sucked a lemon when I heard this,…

The emphasis – or at least consensus, by the end of the session – is that it’s okay for a scientist to use first-person narrative so long as they don’t let themselves take over the story. Which, and I suppose that this is coming from a humanities background, is a weird thing to hear. It’s like the writing version of the Observer’s Paradox – a notion that “you” can be separate from “story.” And maybe this is where medicine actually comes out ahead (for once), because there is already the idea that narrative matters and that the doctor isn’t separate from the story they are telling.²

Why does this matter? Well, some people will argue outreach and accessibility, but honestly? I think it’s because first person narrative humanizes the subject via the author. I’ve had some experience with this, both with the experience of my mother’s cancer and death, and with my own recent cancer scare, and the feedback I’ve received³ has almost always been along the line of making it real. Science and medical writing is often very dry and removed, not only from the author but the reader. When the author connects to the story and personalizes it via narrative, the reader has the chance to engage with the author on a personal and human level, which then allows for a different (and at least in my opinion, more genuine) connection to the science within the story.

And there are science writers who excel at this sort of thing. I think Deborah Blum is one of our contemporary success stories, in that she makes chemistry really interesting, and she does so through narrative both personal and otherwise. Her stories of musing about the best way to poison someone over a meal with her husband, and his reaction, makes an immediate connection and draws interest.⁴

If you’re not writing a memoir, you do have to be careful to not let “I” overshadow the story that you’re writing. But this doesn’t mean that the “I” should be removed completely, only that you-the-author needs to understand the point of utilizing first person narrative; what’s the goal as you write that story? Are you trying for connection? Are you hoping to personalize a difficult concept? Are you trying to illustrate why something is important? Are you connecting the audience to your story via your found enthusiasm for a topic?

Just like any other literary device, the choice to use first person narrative should actually be a choice designed to enhance your story – be it hard science story or otherwise. In fact, I’d argue that the authorial voice itself is a choice, whether you’re choosing third, first, or even second person narration to get that idea across. And as such, and due to the inherent strength and weakness of each, it should be a conscious choice, regardless of which voice is chosen.

1. Who, by the way, tells an awesome mucus plug story.
2. Which, should note, doesn’t mean all doctors believe this. However, doctors who write,…
3. And I should note that these series typically generated more comments than anything else I’ve ever written, save perhaps when I pissed off the University of Washington pharmacy school, and department,…and most of the pharmacists in Washington state.
4. Or at least it does for me, since I’ve been known to have similar conversations (with just about anyone who will listen, not just my partner).

I really don’t know what to expect this week, because not only have I never been to Science Online, I’ve never been to an unconference-style conference. Which in itself is interesting, since I’m leading one of the sessions. (Look for musings on that later on tonight.) For now, I’m approaching that more like I would a classroom-based discussion, and hoping my teaching and improv skills aren’t so rusty that I’ll fall completely on my face. (Falling on my ass is acceptable.)

I suppose I should be nervous. My propensity for jumping into conversations can be useful on Twitter – it is, after all, how I got sucked into this whole thing to begin with – but it also leads me into talking with people who, if I stopped and thought about it for a minute, I would probably be at least slightly intimidated to talk to. (Typically by the time that part of my brain catches up to the rest of me, I just sort of ruefully shrug and go “oh,…yeah? Oh well.”)

I’m finding I’m not, though. I’m looking forward to meeting the folks I chitchat with through the day, join in eye-rolling at bad science, talk to about journalism and biology and science and writing and all those things. I’m hoping to take the chance to do some decent networking (something I actually tend suck at), and dip my toes further into the freelance waters, or at least get a better idea of how to. (Ideally I’d just eat Ed Yong‘s brain and gather the information that way – well, maybe; I’d have to confirm his age and eating habits to consider nvCJD risk – but culturally that’s frowned upon. Plus I think Ed’s still using it.)

It helps, too, that there’s something of a party atmosphere to this that I’ve not associated with most conferences I end up at; the liquid nitrogen OMG SCIENCE IS AWESOME beer floats on tap (er..canister?) for Thursday night caught my eye, and of course, lemurs. I get to go see lemurs. I’m seriously going to Kristen-Bell-meets-sloth a lemur.

I guess, then, my expectations are pretty simple: meet some people I know in another sense; squeak at some lemurs; have beer; and take my brain out for a walk, spending a couple of days having conversations about things I love to talk about. Anything beyond that will be serendipity–or at the very least, a pleasant surprise.

For more than one of us, I’m sure, that’s the kind of headline that makes eyebrows climb and perhaps a slight whispered “oh, god, no.” And certainly, statements that the authors are making about this study seem to indicate that there’s reason to worry:

“While this study doesn’t prove that a better first time makes for a better sex life in general, a person’s experience of losing their virginity may set the pattern for years to come,” said author Matthew Shaffer, who suggested that thought and behavior patterns may be formed the first time we have sex and then guide future experiences.¹

Shudder. But, in her coverage, Lindsay Abrams’ notes that there is one massive flaw in this study: none of the participants had been having sex all that long, and all of them were between the ages of 18-22. And, in fact, that’s enough of a flaw that I went and dug up the rest of the study, to see just how accurate the notion that first sexual experiences do actually influence our future sex life, happiness, pleasure, and so forth.

The good news is, the study is so fundamentally flawed no one should do more than roll eyes at it, and sigh as you watch Jezebel and other pop culture sites cover the study results while sending up some sort of Lena Dunham-esque² panic flare.

Let’s take a look at the numerous issues in this study. First (and more than one person would argue foremost), the sampling size is horrible: all participants were undergraduates recruited from psychology courses at the school, who were offered both extra course credit for participation and entered into a raffle to win gift cards. For better or worse, students do self-select themselves into courses based on interests, personality types, etc – a lack of hard scientists, for example, may have significantly skewed the data presented, as I’m sure did the promise of extra credit and financial reward. Likewise, the final numbers (206 women and 113 men) may have been more balanced had there been more effort at reaching a more balanced study population.

But balance is off here in more than one way: all study participants were required to have had their first sexual experience (“losing their virginity”) be a heterosexual experience. Was your first time with a same-sex partner? Are you bisexual? Any non-heterosexual students need not apply – apparently how your sex lives are shaped is too complicated.

And oh, hey, were you raped?

Hate to break it to you, but that’s an automatic disqualification from the study – even though all of the headlines you’re going to see about this are going to imply that the fact you were raped is going to irrevocably and forever shape your sex life.

So once the researchers had their voluntary, heterosexual, 18-22-year-old students for this study, where the median length of sexual activity was 2.27 years, the researchers then asked the students to self-report their sexual habits and experiences… for the following two weeks.

Oh. OH. So, you’re going to extrapolate from heterosexual college students who have been sexually active for, on average, slightly more than two years, and then make assumptions about the sexual lives of everyone? For the rest of their entire lives? Based on two weeks?

Well, apparently the researchers behind this study think that’s a perfectly reasonable study goal. Me? I’d like to talk to the editors for the Journal of Sex & Marital Therapy. We need to talk about study design and worthwhile results to publish. I’m pretty sure we need to start with the fact that when a paper discussion says

this study focused on the role this milestone event may [emphasis mine] play in future sexuality

or asserts that the two-year experience of ethnically homogenous, heterosexual college kids is representative of the entire span of human sexuality, forever, the appropriate response is not “accept,” but something between “revise and resubmit” and “reject.”

1. Taken from Lindsay Abrams’ coverage inThe Atlantic.
2. Hat tip to Lindsay for the cultural reference. My age appears to be catching up to me.

I think of the museum fondly, and somewhat frequently. It was always fun to run around the Palace (before or after playing in the museum), it’s part of one of my favourite urban fantasy novels, and it is very much one of the places that fueled my love of science, hands-on exploration, and discovery. I learned about optics and illusions and concepts of surface strength via bubbles, there. They made math fun, they made science an adventure, and they let everyone play, regardless of age. It was a fantastic, phenomenal place.

I’m talking about it in past-tense, which isn’t fair or accurate – the Exploratorium still exists. But when I was looking up information to share with Nick this morning,² I had a rather surprising shock: the Exploratorium has moved.

They’re on Pier 15/17 now, or will be come mid-April. I’m so thrilled that they’ve grown enough in size and staff and exhibits to need a larger space. In an age where it seems like science isn’t valued and museums are always under threat of budget cuts and closures, that the Exploratorium can move and expand is beyond fabulous. But it’s also a little sad, at least for me – another small but seminal piece of my childhood gone. I guess it’s a sands-through-hourglass thing; changes continuing apace. And there have been a lot of changes lately.³

1. Those of you with very long memories will also note that this is where I got married, once upon a time. That was more needing a pretty outside place in January in San Francisco, though, than any particular link between that marriage and the location.
2. A conversation based on the idea of doing things you’re told not to do and the Mythbusters, of course.
3. Not, mind, that I’m complaining. Especially the cleaning the house related bits, just because it’s nice to get rid of things after having done so and then had Unexpected Life Events create a somewhat untenable situation of too many items, some with memories that made dealing with difficult. But I think it’s also easier to notice change when you’re in the middle of change, especially change that runs hard with nostalgia and memory.