Wednesday, April 30, 2008
Over at the Panda's Thumb, blogger Timothy Sandefur explains that the case was thrown out on a pair of technicalities: Abraham failed to file his complaint within the required time period of a notice from the EEOC, and he couldn't personally sue Hahn under applicable law. It could well be that this will be appealed--and that Abraham will be the new poster child for Ben Stein's creationist campaign. Stay tuned.
Tuesday, April 29, 2008
In yesterday's Federal Register, the FDA published its amended rule for accepting for regulatory review data collected from in foreign clinical trials not performed under an IND.
I'm thrilled that the FDA wants all trials submitted to it for review to be conducted in accordance with Good Clinical Practice (GCP) guidelines, including review and approval by an independent ethics committee such as an IRB or a REC. In doing so, however, the FDA removed from its regulations all reference to the Declaration of Helsinki.
Many of us in the advocacy arena have been arguing against this proposed change for years, suggesting instead that the FDA should work towards harmonizing the substantive requirements of GCP with the ethical aspirations of the Declaration of Helsinki. But the Agency chose to ignore us, leaving many of us to wonder if this is just another example of the FDA kowtowing to corporate business interests ... particularly their oft-stated opposition to Paragraph 30 of the Declaration:
"At the conclusion of the study, every patient entered into the study should be assured of access to thebest proven prophylactic, diagnostic and therapeutic methods identified by the study."
Monday, April 28, 2008
Here's one of her clips from Youtube:
What a nice reminder that one person can make a difference! You go, girl!
According to a study published last week in PLoS Medicine, available here, life expectancy for some people--and particularly women in the Deep South and Appalachia--has actually decreased since the 1980s. According to the lead author, Dr. Majid Ezzati, "The finding that 4 percent of the male population and 19 percent of the female population experienced either decline or stagnation is a major public health concern." Yeah, you could say that. The main culprits are identified as chronic diseases related to smoking, overweight and obesity, and high blood pressure.
Life expectancy has long been regarded as an indicator of the effectiveness of a country's health and social systems. The fact that we seem to be moving backward, particularly in poor parts of the country, is bad news. You can read more at the NYT.
And because I can't help it on a Monday, here's a big fat helping of irony for you: Linda's link to Art Caplan's commentary on the ethics of extending life (ie, there's nothing wrong with us "haves" choosing to extend our lives) and this MSNBC feature, on the crazy things some women are doing to their faces in hopes of looking younger (having outlived their dewy complexions, presumably).
Social justice, anyone?
Photo credit: Shelby Lee Adams for the NYT
This year's theme was "Out of the Silence, Finding Our Voices", and guest speakers included visiting professor of sociology Linda Relyea speaking on relationship red flags and the difficulties and dangers in leaving abusers, Luz Marquez from the National Organization of Sisters of Color Ending Sexual Assault, who spoke about their work modifying the Violence Against Women Act to be inclusive of cultural differences in approaching healing to violence, and UPenn's Dr. Salamishah Tillet, who shared bits of A Long Walk Home: A Story of a Rape Survivor, her own narrative of moving from rape victim to rape survivor.
The event itself was structured well, moving from personal accounts of rape and violence to a larger overview - a hook that then led to education, and a major emphasis of the last speaker (Professor Relyea) was in making sure the target girls in the audience, girls in the 18-25 age group, understood the warning signs (red flags) of violence and shied away/extracted themselves from those situations. Being not in that target age group, my attention started to drift and I found myself refocusing on earlier speakers comments, especially those in the narrative provided by Dr. Tillet.
Years ago, I did the occasional domestic violence awareness talk, and almost always looped it into the sex education courses I taught. One of the things I struggled with was how to refer to those who had experienced assault. Rape/DV victim seemed, in itself, a victimizing word - reminding someone over and over of their loss of agency, their status of a harmed, violated being; it seemed to emphasize submissiveness. At the same time, survivor seemed to be a flip side of that coin, seeming to emphasize success and healing that might not have actually taken place. There are interesting parallels that can be drawn here between victim/survivor and Erving Goffman's ideas of the discredited and discreditable in his seminal work Stigma: Notes on the Management of Spoiled Identity; that those who have experienced a trauma have two processing routes. There is the immediate and self-conscious, what Goffman calls the discredited, where the person assumes that the trauma they have received is evident and available to everyone, and a more delayed and suppressed response that assumes no one knows what has happened (Goffman's discreditable). In both cases, how a person interacts with the world after their trauma changes based on what they assume the world sees, but for the discredited it is because they assume everyone knows, while the discreditable is wrestling with an internal actual change that does not match the personae shown to the public.
I never did find that healthy balance between the two tensions, of victim or survivor, and learned to simply follow the lead of those I was speaking to, or to use the as neutral as I could conceive of term "someone who had been raped/experienced DV" - a phrase I felt acknowledged a change in how someone might view their own self-identity without casting their entirety into a role defined by trauma.
But as interesting and academic as those thoughts might be, they don't actually deal directly with one of the biggest problems behind rape and DV - silence born of shame. And we can again go back to Goffman's stigma for this: we have become something other than we, and those we know, see as us, and because of the general prohibition about sex in our society, combined with Puritanical attitudes that shame women for being sexual creatures (the good ol' Madonna/Whore dichotomy), that change is viewed as bad, negative. Tarnishing and tainting. (A problem that exists for men, too, only instead of dealing with the Madonna/Whore dichotomy, they have a questioning of masculinity issue.) The traumatized person has to mediate between a new self and their old self, and the fact that what has happened to them is often, by social conditioning, seen as something that either faults or contaminates them. And so you stay silent, you suffer, you repress. You attempt to hold on to that damaged identity, reconstruct it, ignore the fraying edges, deny. You find excuses - it's my fault, if only I was a better person, if I hadn't... if I wasn't...
And to be very honest, I'm not sure how we erase the shame and stigma that so often comes along with rape and domestic violence. Certainly the standard response is to talk about it, share stories, force people to listen and learn and understand. But I'm not convinced that works as well as we would hope; in fact, sometimes I think that those who are able to do so almost work to increase the shame and stigma felt by those who, for whatever reason, feel unable to speak out, speak up, share themselves. But an interesting suggestion raised itself over at, of all places, a website devoted to snarking romance books. A reader wrote in for recommendations for a friend's mother, trapped in a domestic violence situation. The abused woman reads romance novels, and the concerned friend was hoping to start passing her books with themes that have an abused woman successfully leaving the abuser, pulling her life together, and falling happily in love, and into a healthy relationship. The idea is almost beautiful in its simplicity: indoctrinate someone via their recreational reading that the situation they are in is not only unhealthy/bad/abusive, but not permanent, not something that she has to settle for, and that it is possible to both leave and happily move on.
It got me thinking about a story I used to tell, when doing that DV/rape education, about a woman whose music was the impetuous for her own leaving an almost decade long abusive situation. Instead of finding strength in romance novels, she found strength in the lyrics from one of her favourite bands. That song went through my head a lot on Saturday evening, as speakers talked about how you reach the point of knowing, how one day you do just wake up and say "screw it, there can't be anything worse than this, I'm going." And so I wonder, how much power and effect does media have, or could/can have in situations like this (and others)? Can we habituate people to realize that their situation is untenable? Would a multi-pronged push at both genders, targeting abuser and abused, work to train people to change behaviour? I don't know - I'm not sure it could work, effectively, as counter-programming to all the things in society that have been linked to increases in abuse and violence, from war to declining economic realities.
That said, it's interesting, and perhaps works as an accompaniment to people refusing to be silenced and shamed for trauma that is most definitely, firmly, cannot argue the point, not their fault.
The numbers of people who experience sexual assault vary, but you can't argue that it's a grim statistic no matter how you look at it. Every two minutes, someone in the United States is assaulted. Now expand that to North America. The world.
We have to find a way to break the silence.
Sunday, April 27, 2008
What time of the month to have sex, what positions were better for X or Y sperm, whether or not the acidity of the vagina changed the longevity of the sperm - we read it all, clipping articles and saving them, writing down the names of books, making photocopies.
I don't remember, really, how much credit we ever gave these ideas. I do, however, remember that we scoffed openly at the idea of what you eat affecting the sex of your child. How naive did the amorphous "they" think we were, anyhow?
Needless to say, it doesn't surprise me that of all the possible wives tales about how to fix the sex of your child, the one that looks to be at least provisionally plausible? What you eat.
A study of 740 first time mothers in Britain shows that whether moms eat breakfast cereal or not might determine whether their bundle of joy is a boy or a girl. ..."Prior to pregnancy, breakfast cereal, but no other item, was strongly associated with infant sex," the researchers write in the journal Proceedings of the Royal Society B. "Women producing male infants consumed more breakfast cereal than those with female infants."Lead researcher Fiona Mathews thinks that this might be another way the body gauges whether or not food is plentiful or scarce; in a famine, the less energy intense female fetus makes more sense to biologically invest in, a finding echoed in a lot of animals, which produce more male offspring when food is bountiful. (I would guess it has something to do with future offspring potential - men can create quite a few more children than women, so populations would be checked, to a degree, by having more wombs than sperm.)
The reason is a mystery, but Mathews speculates that glucose may be key. This type of sugar, converted by the human body into energy, is a by-product of the breakdown of carbohydrates such as those in breakfast cereal. Women who do not eat breakfast tend to have low levels of glucose, and other studies have shown that glucose enhances the growth of male fetuses in vitro.
But maybe the most interesting thing about the research?
The finding may explain a persistent and puzzling drop in the ratio of male to female births in well-fed industrialized nations, a fact that Mathews ascribes to the decline in the proportion of women eating breakfast.There's still quite a bit of research that needs to be done, including reproducing it in other countries and cultures, but it's certainly intriguing, as is. And I suppose for those who do want to conceive and are hoping for a specific sex, it's at least a little bit more reliable than much of the stuff I was reading those many years ago.
Kelly--have to jump in to add this item from The Onion.
Saturday, April 26, 2008
Both findings were presented Friday by separate research teams attending the European Lung Cancer Conference in Geneva.So,... can we mandate HPV vaccinations for all, now?
"In terms of HPV, our finding is pretty controversial," said study author Dr. Arash Rezazadeh, a fellow of medical oncology and hematology at the University of Louisville in Kentucky. "And this is just the beginning of the road. There is much more work to be done. But it's important to know that being infected with this virus does appear to increase lung cancer risk."
As for the role of measles, the second study's lead author, Dr. Samuel Ariad, from the department of oncology at Soroka Medical Center in Beer Sheva, Israel, said that infection -- perhaps even asymptomatic infection -- seems to be associated with half of the lung cancer cases he tracked.
(Yes, I admit it would be good to see more studies done on this, in larger numbers, and with smokers as well as ill non-smokers. But I watched someone die from non-small cell lung cancer last year, and it's not something I'd wish on anyone - if we can stop even a small handful of those cases, along with all the other types of cancer HPV has been indicated in causing, isn't it worth the unlikely chance that the vaccine itself would encourage promiscuity?)
"As the science of regenerative medicine using stem cells inches forward, as more is understood about how lifestyle influences longevity, as organ and tissue transplants become routine and as geneticists begin to unravel the secrets of why we age, the prospect of living forever — or at least until the Cubs win a pennant — makes the question something more than an exercise in science fiction.
What is particularly interesting is that many of those raising the question of the ethics of immortality do so with an answer already in mind — “No, it’s not right!” Both conservative and liberal writers alike are expressing a lot of moral angst in recent books, articles and opinion pieces about the prospect of people hanging around long, long after the last broadcast of "The Price Is Right" has aired, which could be an eternity.
Why is the prospect of immortality viewed in such a negative light? A bunch of different reasons can be found in the writings of the growing ranks of anti-agers..."
The rest of the article can be accessed here and as far as I am concerned, I would like to stick around long enough to go one of the rejuvenation clinics envisioned by Robert A. Heinlein -- and to make sure the opportunity is available for friends and family, and anyone else who would like to take advantage of a longer, healthier life.
Friday, April 25, 2008
Of course, the Bush Administration doesn't want to cut funding to these abstinence only programs (and especially not in favour of comprehensive sex education programs). The choice quote of the day award goes to Tennessee Republican representative John Duncan, who apparently said with a completely straight face, "that it seems 'rather elitist' that people with academic degrees in health think they know better than parents what type of sex education is appropriate."
(* With my own apologies to anyone now wandering around singing Broadway, or Buffy, showtunes.)
Was she denied care because she's poor? Or even because she's a woman? Maybe, given locale, her religion?
No. Devi was denied medical care, which ultimately cost her and her son their lives, because the Dalit are considered untouchables in India's social/caste system, and despite claims by many that this system is no longer an active part of Indian life - well, evidence shows the contrary.
It's easy to forget, sometimes, when writing about meat (or brains) in vats, abortion as performance art, and other "first world" issues that there are grievous harms against women still occurring as a matter of routine.
That such an attitude, of refusal to treat someone because of her caste, would permeate the hallowed halls of learning (as I idolize academia), to the point that the chief medical superintendent would let the woman lie there and tell her she wouldn't be helped because of her caste is just an utterly shocking, really horrifying, idea for my admittedly progressive, feminist Western mind. How do you rise to such a position in medicine, and then lack the basic compassion necessary to help someone in pain?
The only small glimmer of positives from this story? Doctor Kiran Pandey, head of the hospital gynecology unit, when hearing of the Devi's case, immediately returned from her out of town trip in an effort to treat Devi (although she and the intensive care staff ultimately failed), and the doctors who so callously refused Devi help have been suspended pending a full investigation.
Neuroethics 101: Bioethics Meets Mind Reading
What’s Human Dignity Got to Do With Bioethics?
[*Apologies to anyone else who now has Tina Turner's song "What's Love Got to Do with It?" stuck playing in their head.]
Stephen Holden reviews the film (which is based the novel by Elinor Lipman) in the NYT.
Insecticide-treated bed nets keep the skeeters off sleepers and reduce the rate of infection. You can donate one--heck, they cost a paltry 10 bucks apiece! Donate a few!--at Malaria No More, here.
[Editor's note: And if you are on Facebook, please join in Project Blackout: One Million Faces Against Malaria today.]
Thursday, April 24, 2008
"In this case, we will not permit her to install the project unless she submits a clear and unambiguous written statement that her installation is a work of fiction: that she did not try to inseminate herself and induce miscarriages, and that no human blood will be physically displayed in her installation," Peter Salovey, dean of Yale College, said in the statement.Additionally, Yale officials have said that Shvartz' advisers made serious errors in judgment in approving the project once they were aware of the controversial nature of the piece; the faculty involved have apparently been spoken to with "appropriate action" taken.
Now, this raises even further questions for me. First - if Shvarts presented the project to her faculty advisers as a performance piece/hoax project designed to get the rise that is has been out of us chatty media commentators, why would the faculty raise questions, or seek additional approval? On the face of it, if you want to believe that this is a performance piece and not actually what Shvartz says it is - the result of repeated attempts to inseminate and then herbaly abort resulting pregnancies - then what's the problem? Gelatin, food colouring, plastic, a controversial artist statement, and the precise results any performance artist is hoping to achieve. And if she lied to the advisers, why does this then become something that they should be punished for?
Secondly, the automatic ban on art that contains human body fluids/cast-offs strikes me as stepping very close to censoring art because it is controversial. Many modern, performance, and even "traditional" artists work in human fluids - is this really the appropriate response for officials to have to controversial art?
At this point, unless someone goes in with Luminol or DNA swabs and then runs PCRs, etc, we're never going to know if she actually did what she said - in a way, it's a wonderful example of just how flexible truth and knowledge actually is.
"For thousands of years, magicians, alchemists, even a few fringe medical practitioners have fueled an unbounded optimism that we can blunt the ravages of time, stay younger for longer, maybe even defeat death itself. Their pitches have usually hinged on some drug, food or device - everything from electricity to yogurt to surgically installing the gonads of animals into our own bodies - that will slow or reverse the aging process. Every decade or so, "anti-aging" promoters grasp onto news coming out of research labs and trumpet those developments as the answer we have all been awaiting.Lately, the buzzwords are 'nano,' which refers to the science of the ultra small (a nanometer is one millionth of a millimeter), and stem cells. One 'nano' face cream, for example, promises to stave off wrinkles with 'nano-encapsulated technology' into which the makers have 'packed microscopic bundles of Prodew, a nourishing skin humectant.' "
Further on in the article, WBP supporter and Northwestern University bioethics professor Laurie Zoloth gives her thoughts on these developments. To access the rest of the article, click here.
Wednesday, April 23, 2008
GINA would protect Americans from discrimination in employment and insurance based on genetic test results. As Linda blogged earlier, the act was passed by the House in March (264 - 148) as part of the Paul Wellstone Mental Health and Addiction Equity Act of 2007. You can learn more about the act and its halting progress through the hallowed halls of Washington here.
According to Stebbins, Coburn has now placed a hold on the Breast Cancer and Environmental Research Act.
Tuesday, April 22, 2008
In a follow up to our earlier post, PETA (People for the Ethical Treatment of Animals) is now stepping in and offering a $1 million reward to the first scientist to produce and bring to market in vitro meat. Full story accessible here.
Monday, April 21, 2008
Over at MSNBC, Art writes that Ben Stein's intelligent design documentary is not just bad -- it's immoral:
Rarely has a movie subtitle so capably assessed a movie’s content as does "Expelled: No Intelligence Allowed." There is not a shred of intelligence on display in this just released "documentary" purporting to be a careful examination of the fight over teaching creationism and evolution in America.
The movie seeks to explain why, as a matter of freedom of speech, intelligent design should be taught in America’s science classrooms and presented in America’s publicly funded science museums. But what is really on display in this film is a toxic mishmash of persecution fantasies, disconnected and inappropriate references to fallen communist regimes and their leaders and a very repugnant form of Holocaust denial from the monotone big mouth Ben Stein.
Sunday, April 20, 2008
At its heart, this story is one of medical debate: is hearing the norm? Is a lack of hearing a handicap that needs to be fixed? Or is it just a part of life, a condition to be accepted and dealt with and moved on from?
I know this is a subject that gets a lot of commentary around here, which is why I'm mentioning the movie being on this evening. Given I'm in the finals crunch, I probably won't have time to watch and/or comment on the movie for a few days, but did assume others here would likely be interested - both in the subject matter, and how ethical dilemmas are played out on television.
Saturday, April 19, 2008
Oh, Wikipedia user Reaverdrop, I appreciate your sense of humour, whomever you are.
-Kelly (who should really be working on her essay on black swans and induction...)
Shvarts reiterated Thursday that she repeatedly use a needleless syringe to insert semen into herself. At the end of her menstrual cycle, she took abortifacient herbs to induce bleeding, she said. She said she does not know whether or not she was ever pregnant. No one can say with 100-percent certainty that anything in the piece did or did not happen, Shvarts said, because the nature of the piece is that it did not consist of certainties.Well, at least we are now starting to see bits and pieces of an artist's statement - something I'm still trying to track down.
But Yale isn't happy with this latest development, with the dean of the art school, as well as Yale proper, speaking out against this, and discussing how future senior projects will be reviewed, supervised, and approved.
Shvarts is right - we'll never know what "the truth" of this situation is. But that's not necessarily the point; truth isn't always needed to have discussion, to consider possibilities and what if's. And my problem with this entire situation is both narrow and broad in scope. Narrowly speaking, as a student myself, I'm irritated with the very idea of someone so blatantly causing trouble that will then turn around and impact other students - future art students are going to have a lot more grief and oversight and hoops to jump through because of Shvarts, and that seems almost intuitively unfair, and selfish. There's an element of "about-me at the expense of others" to the piece that I simply find distasteful.
But the broader concern is over art in general, and who supervises it - especially bioart.
It's no secret that I'm a fan of DIY biotech and the art that comes out of the movemet. The Critical Art Ensemble is one of my favourite performance art groups, and I love how thought provoking their biotech projects are. And as it becomes easier and easier to grow your own biotech, we're going to see more artists using biological materials in their work. The difficulty of Kac's Alba the GFP Bunny is going to give way to homebrewed experiments and art - sort of literally. As is, the walls of my office are decorated with art from students using osteoblasts to make things as diverse as religious symbols and art highlighting the life cycle of Pacific Northwest trees; freshmen and sophomores with no biology background spending 5 weeks in a basically equipped lab, making fascinating and interesting art. (I still wish I had a picture of the spiral nebula one student made out of her DNA. Figuring out how to photograph that one was a challenge!)
As DIY biotech becomes easier, as more artists begin to question what it means to use our bodies as art, interactive with the world, or any number of other justified reasons, we're going to hit these boundaries. These points that might generate a yuck or a wince or a deep-seated intuitive response; and what do we do then? Where do we draw the line? Art has often pushed boundaries, and in general we allow for the freedom of the artist to engage in whatever work they want, so long as it breaks no laws. That's part of art, to push and make us think, re-evaluate.
Are we going to need to change this idea in the face of DIY biotech and bioart? Are some sort of reviews of bioart proposals necessary? Does it need to be vetted by an ethicist, some sort of specialist? Or at least supported? Is it even a valid area for an ethicist to get into, or does it become antithesis to the entire idea of art, having someone approve or deny the process itself?
Shvarts is certainly getting debate and dialogue over her art project - I'm just not certain it's the dialogue she was hoping to create.
"If you’re heading out to the movie theater this weekend, I wouldn’t recommend spending your money on 'Expelled: No Intelligence Allowed,' the latest attempt by the intelligent design movement to infiltrate science classrooms and labs with a decidedly unscientific idea.
The movie bills itself as a documentary, though as the New York Times review quite aptly put it, the film is more like 'a conspiracy-theory rant masquerading as investigative inquiry.' "
Thompson's commentary includes reference to Sciam's excellent Six Things in Expelled That Ben Stein Doesn't Want You to Know... and the review by Richard Dawkins’ and the one by biologist and blogger PZ Myers. She also does a great job in pointing the reader to explanations of evolution (and some of the varying ideas about it), at this article or this one. And for a discussion of intelligent design, check out this piece.All in all, the piece echoes Sciam's review, accessible here. And if you want a little chuckle, check out Youtube parody, Sexpelled:
Friday, April 18, 2008
As I drive to or from work at the
The ban stems from 1983, when the FDA decided to protect the blood supply –and thus protect transplant patients- from the HIV virus. At the time, HIV/AIDS was a new epidemic, and the majority of cases in this country were gay men. We also didn’t have accurate HIV tests in place. The epidemic has changed dramatically since then. Worldwide, heterosexual (man to woman or vice versa) transmission of HIV/AIDS is the main way in which people contract HIV. In the
The way that the blood donation services screen out gay men is by asking each man if they have ever had sex, even once, with another man since 1977. Those who say they have are permanently banned from donating. So even men who do not identify as gay but who have had sex with men get banned. What seems horribly troubling to me is that, nowadays, this is a ban based completely on sexual orientation, rather than risky behavior. Yes, unprotected anal sex is the “riskiest” of all sexual activities because of the nature of the cells in the anal region and how sensitive they are to small cuts & bleeding that normally happen during sex (and especially during “rough” sex). But plenty of heterosexual people engage in this activity as well. And we shouldn’t assume that all gay men engage in that activity anyway. Also, just because you are a gay man or a man who has sex with men, it doesn’t mean anything about the safety of your sexual practices (unprotected vs. protected sex) or about the number of partners you have, or about your risky behaviors in general. A heterosexual man or woman could easily have multiple partners and engage in risky sexual activities like unprotected anal or vaginal sex, therefore being more “at risk” for HIV than a gay man who practices safer sex and is monogamous. But the heterosexual man or woman would be able to donate blood and the gay man wouldn’t.
I hope that the FDA changes this policy soon because from an ethical and a medical standpoint it seems discriminatory. And I’m sure there are plenty of healthy, HIV-free gay men or men who have sex with men who would be more than happy to donate blood if they could, and plenty of people like me who would stop boycotting the blood banks if they changed the policy, thus easing this “urgent need” for blood donations.
Thursday, April 17, 2008
New Haven, Conn. — April 17, 2008
Ms. Shvarts is engaged in performance art. Her art project includes visual representations, a press release and other narrative materials. She stated to three senior Yale University officials today, including two deans, that she did not impregnate herself and that she did not induce any miscarriages. The entire project is an art piece, a creative fiction designed to draw attention to the ambiguity surrounding form and function of a woman’s body.
She is an artist and has the right to express herself through performance art.
Had these acts been real, they would have violated basic ethical standards and raised serious mental and physical health concerns.
Even with the explanation, I'm still not sure I get it. Anyone?
Art major Aliza Shvarts '08 wants to make a statement. Beginning next Tuesday, Shvarts will be displaying her senior art project, a documentation of a nine-month process during which she artificially inseminated herself "as often as possible" while periodically taking abortifacient drugs to induce miscarriages. Her exhibition will feature video recordings of these forced miscarriages as well as preserved collections of the blood from the process.So yes, internet, I have seen this, and the reason I didn't place it up here sooner is... I really, honestly don't know what to say.
The goal in creating the art exhibition, Shvarts said, was to spark conversation and debate on the relationship between art and the human body. But her project has already provoked more than just debate, inciting, for instance, outcry at a forum for fellow senior art majors held last week. And when told about Shvarts' project, students on both ends of the abortion debate have expressed shock . saying the project does everything from violate moral code to trivialize abortion.
The display of Schvarts' project will feature a large cube suspended from the ceiling of a room in the gallery of Green Hall. Schvarts will wrap hundreds of feet of plastic sheeting around this cube; lined between layers of the sheeting will be the blood from Schvarts' self-induced miscarriages mixed with Vaseline in order to prevent the blood from drying and to extend the blood throughout the plastic sheeting.In my office, I have artwork made by students - and some of that artwork contains human osteoblasts. Although I don't own any of it, some students used their own blood or sperm in their projects; I have an art project done for a research course that is bound with my hair. And then, of course, there is Critical Art Ensemble's BioTech projects, including Cult of the New Eve, GenTerra and Marching Plague.
Schvarts will then project recorded videos onto the four sides of the cube. These videos, captured on a VHS camcorder, will show her experiencing miscarriages in her bathrooom tub, she said. Similar videos will be projected onto the walls of the room.
The idea of using the body and its cast-offs in art is nothing new. There are even well known artists, male and female, who use menstrual blood in their work, and of course, Turner Prize winners have used just about every secretion and bodily cast-off possile in their art. So I can approach it from that view and theory and it's interesting, potentially provocative. I'd like to see her artist statement and what the point she was driving at with is.
And then I pause and go "waitaminute, she intentionally got pregnant and aborted multiple times for art?!" and it's hard not to have an intuitive moral outrage - perhaps regardless of your position on abortion. Abortion is not something to be done lightly, it's not a lark. It's often a difficult and wrenching position for women to be in, especially those in areas where the local community is not so supportive of a woman's right to choice. And even if a woman feels nothing but lightness and joy at no longer being pregnant, it's still hard to ignore the fact that the choice made was a serious decision. I think Yale student Sara Rahman ('09) had it right when she said that the art project "turns what is a serious decision for women into an absurdism, [and it] discounts the gravity of the situation that is abortion."
Personhood, moral agency - these are things that are difficult to define, and defend. It's a core discussion in bioethics, and probably always will be; I have a hard time seeing us suddenly wake up one morning and all agree. But this seems to go beyond, and I fear that why it's going beyond might get lost in the shuffle, or accusations that I've already seen (if you support abortion this should be fine it's the same thing etc).
I'm still thinking about it, but I think the line it crosses it not that it's an abortion, but that it's an abortion for entertainment. While it is certainly her body and her own right to do with it as she will, it's coming dangerously close to the almost apocryphal stories of women who use abortion as birth control, only instead of finding herself unintentionally pregnant and aborting, she is intentionally impregnating herself, aborting while filming, rinse and repeat. There seems to be an intentional callousness to this that separates it out from the often legitimate moral questioning that revolves around the abortion debate, and knocks it into an entirely separate sphere best defined by three letters: W T F.
I admit, I find myself really hoping that the actual art project is analyzing social reaction to a "fake" project (of abortion as art).
So tell me, internet, as I mull this over and see if I can come up with a more coherent argument: what do you think?
Wednesday, April 16, 2008
What's the big deal? Well, for starters, there's the potential for conflict of interest when a drug manufacturer (or anyone else) writes up positive research results about a product in which they have a financial interest. Disclosing such interests is the usual "solution." In this case, there wasn't just non-disclosure; rather, there seem to have been purposeful steps to make it appear as though Merck wasn't involved. Moreover, from the standpoint of research ethics, it's not kosher for people to attach their names to papers they had no role in writing, or research they weren't involved in.
The news also raises the question of whether the research results reported are, in fact, valid and trustworthy. Journal articles are the primary way the medical community learns about advances in clinical care. If people or corporations are willfully putting bad information into the system, patients could suffer or be harmed as a result. The sketchy track record of Vioxx, combined with the news that at least some of the studies that encouraged its adoption in clinical practice might have been written by its manufacturer .... well, it doesn't look good for Merck.
I saw these two stories on the same day and they just struck me as so discordant:
The Hope: Making the World A Billion Times Better.
and then the Reality of today: Supreme Court Upholds Use of Lethal Injection
How ironic -- the search for extending life vs. the determination to end life. It occurs to me that the latter, especially with this Supreme Court decision, supports what has been termed 'a culture of death.' Yet, my impression is that the same folks who accuse progressives of supporting a 'culture of death’ would not support the search for longevity and life-extension.
Monday, April 14, 2008
Several nonprofits that promote research on in vitro meat have sprung up, including New Harvest and InVitro.org; there was even a in-vitro meat symposium last week. Researchers hope to have this to our dinner tables within 5 or 6 years.
[Photo Credit: Australian artists in the Tissue Culture and Art Project grew this test tube steak for their exhibition Disembodied Cuisine. Tissue Culture and Art (TCA) Australia]
For the complete article, click here.
At the moment, there's no legal barrier against the Feds' deciding to build a national database of our genetic information to be used for law enforcement purposes. The FBI already has a database of genetic information from convicted criminals, and it has lobbied to make the database more inclusive (eg, to retain samples/data from people who have been arrested but not convicted).
In the UK, a national DNA database has been built that contains genetic information on more than 5% of the population (compared with the FBI's collection on 0.5% of Americans). There's been substantial debate in the UK about the legality and propriety of the resource: you can read more here, here, and here, for example.
Lots of people--including health researchers, pharma companies, insurers, employers, and law-enforcement agencies--would like access to huge datasets of individuals' genetic information. Once such repositories are built (and they are already being built), arguments in favor of a centralized resource are sure to follow, citing efficiency and cost-savings benefits. There are (imo) important privacy and civil liberties reasons to resist such developments.
Sunday, April 13, 2008
I can appreciate (although not necessarily agree with) the stance that tampering with any embryo is 'playing God.' Similarly, I can appreciate the arguments that genetic enhancements pose concerns in terms of creating inequities and in terms of eugenics. But I have difficulty understanding, much less appreciating, the argument that a couple should be allowed to genetically 'disenhance' their child. I understand that some deaf couples argue that deafness is not a disability, but rather "being part of a linguistic minority." But maybe it is because I spent too much time in the Rhode Island State House as legislative counsel in the 80's and 90's listening to the testimony of Deaf Advocacy groups lobbying to make sure that public services complied with the Americans with Disabilities Act. I have difficulty reconciling that deafness, under the law, is a recognized disability, but for the purposes of reproductive autonomy, it is not?
My concern about removing the clause banning the creation of disabled children entirely, is why stop at deafness? Aren't the primary purposes of medicine to heal, to cure diseases, restore, and alleviate suffering? One commenter suggests, by way of a 'wrongful birth suit', the imposition of legal liability on the part of the parent to any offspring deliberately brought into the world with less than the normal range of faculties.
So the question is how far does reproductive autonomy go? Nobody wants to see a fellow human being struggle or suffer, especially in the name of 'reproductive autonomy.'
Friday, April 11, 2008
"When people who cannot have children and want their own from their own blood, meaning having their genes, what will stop them from putting some cells into a cow to get their child?"Here's the original article from Genetics, for more information about the ASHG contest.
"Genetics create a perfect being. Change the genes. Make that child perfect. There's no better solution to an impending health care crisis. A perfect child means that health care can be focused on an aging generation of people. What we can have is a sea of people who all look brilliant, who are all smart and who all have perfect eyes, nose and lips. It's a perfect society, what more could we want?"
Consider this, too: these are the responses of students who were willing to participate in an essay contest about genetics. What must be the level of understanding among those who wouldn't bother? Clearly, CLEARLY, we need to do a better job of K-12 science education.
If there's a silver lining here, it might be that ethical questions could serve as a "way in" to discussion of the science, especially for students who may have little interest in science per se. In both the examples above, students' grasp of the science is lacking, but there are clues that suggest they have some sense that there's a moral element involved.
"Not long ago, a young Ohio woman named Trina Bachtel, who was having health problems while pregnant, tried to get help at a local clinic.
Unfortunately, she had previously sought care at the same clinic while uninsured and had a large unpaid balance. The clinic wouldn’t see her again unless she paid $100 per visit — which she didn’t have.
Eventually, she sought care at a hospital 30 miles away. By then, however, it was too late. Both she and the baby died.
You may think that this was an extreme case, but stories like this are common in America." The whole column can be accessed here.
Thursday, April 10, 2008
Martha Farah director of UPenn's Center for Cognitive Neuroscience, calls this "America's uncontrolled experiment in pharmacology." The drugs are risky, being taken in an unsupervised manner, and no one really knows what they will do or the long term side effects of taking them on a neurocognitively normal brain. And even more to the point, no one knows where people are receiving their supplies - the internet? Are they even getting what they ordered?
Brendan Maher thinks this is just our competitive nature coming out, wanting something that no one else can have and doing our best to achieve it - or at least take it away from them. I'm not necessarily convinced this is it, or at least all of it - it seems that it is our keeping up with the neighbour instincts coming out, and the desire to make sure we're doing everything we can to be in a competitively even situation with those around us.
Still, given how easy it is for off-share pharmaceuticals to become contaminated, or not made of of the basic ingredient in the first place, the lack of medical supervision and lack of long term followup is worrying. We simply don't know what these drugs will do long term, and what the consequences will be not only for the user but, at least in the case of medical professionls, the people that they treat.
Wednesday, April 09, 2008
Stories like this, however, are why I think it's important that women's views are heard, loud and strong. There are so many things wrong with the following statement, starting with someone feeling like it was an acceptable comparison to make, moving into the problems rape victims face, gender imbalance and expectations in marriage, the undermining of the concept of consent - it goes on, and on. Is it strictly related to bioethics? Not necessarily, although I think it's possible to create very solid, bioethical related arguments around and against rape. Is it an attitude we should all be aware is still out there? Most certainly. From the Londonist:
The BNP’s Nick Eriksen learnt this the hard way last week, after he was sacked as the party's London Assembly candidate for publishing jaw-droppingly obtuse views on rape on his blog. The post has since been removed, but luckily journalists were quick to spot the following:When our elected officials (and I use our on a global scale) harbour these views towards women, then it's likely that they're not going to be the advocates for women's rights, health, and etc."Rape is simply sex (I am talking about 'husband-rape' here)... Women enjoy sex, so rape cannot be such a terrible physical ordeal…To suggest that rape, when conducted without violence, is a serious crime is like suggesting force-feeding a woman chocolate cake is a heinous offence.”
Tuesday, April 08, 2008
The EMR company isn't identified--a smart PR decision, I'm sure--but they will receive subscription and program fees, as well as "milestone payments" for new products that are developed as a result of the collaboration.
I hardly know where to start with this. First, patients' records are being provided, without consent, to a third party. Not for the common good, but for corporate profit. The EMR company will supposedly not share patients' identities with Perlegen--just their records--but it's unclear what happens down the road with genetic information (which is, as I have mentioned here before, not capable of being wholly de-identified). The fact that physicians are being recruited into this process as well--and that they will presumably get their cut--is problematic. The more old-fashioned among us still think that doctors have a fiduciary responsibility to patients that would preclude this kind of behavior.
All this money will likely come from pharmaceutical companies that are vying to produce tailored drugs. When the drugs hit the market, you can bet that the patients whose records were used will not be receiving a price break.
The final straw? The EMR company is not named, and won't be--so patients have absolutely no recourse or ability to opt out of this project.
Edited to add this link to a story on Pharmacogenomics Reporter and another from Healthcare IT News. Apparently I'm not the only person who has a problem with this development: Patient Privacy Rights doesn't like it either.