It's 10:00...do you know where your medical record is?

I've been meaning to blog this once since I saw it a couple of weeks ago: Perlegen Sciences, a spinoff of Affymetrix and a "recognized leader in genomics" (by their own lights) recently signed a deal with an electronic medical records (EMR) company for rights to the medical data of 4 million patients. According to the Perlegen press release, the data will be mined for "genetic markers that could help predict patient response to certain treatments." Patients who meet defined criteria will be sought--through their personal physicians, no less--to obtain samples of their DNA.

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.

Like to Live on Mars? Apply to be Virgle Pioneer

Are you adventurous? Interested in the ethical implications of contacting alien life? Or ethics of terraform? And do you have an advanced degree in science? And don't mind being in close quarters with others for an extended period of time? You might be interested to see the plans by Richard Branson (of Virgin) and the founders of Google and want to apply to be a Virgle Pioneer -- one of the first space colonists on Mars.

Take the quiz here, see if you qualify, and if you get past the first part, you can submit a YouTube video explaining why you'd qualify to be a Virgle Pioneer. (I wonder if they need any bioethicists?)

[Editor's note, added April 9, 2008 -- Apparently, this was an April Fool's Joke (Doh!) -- Anyway, they got me good! - No one ever said that bioethicists weren't gullible.]

Dad's influence on fetal health

As a relatively new aunt, I've been watching my sister go through the bewildering maze of do's and don'ts that faces pregnant women and new moms. While she was pregnant, it seemed mostly to be don'ts, actually: Don't eat soft cheeses. No caffeine. Don't eat fish--no, wait, do eat fish. Absolutely no alcohol, ever. Avoid pollution, chemicals, allergens--in fact, if you could just stop breathing for the next 9 months, that would be ideal.

But guess what? New research shows that it's not only mothers to be whose behavior and environmental exposures affect the baby's health. (And here is the million-dollar question: why should this be at all surprising?!)

This article in Science News (free access online 'til 4/15) describes new research that suggests that a father's age and exposure to chemicals can affect the health of his child in lasting ways. Older dads are more likely to father children with autism, Down syndrome, and schizophrenia; and their daughters face an increased risk of breast cancer. Younger dads are more likely to have low-birthweight babies. And men's exposure to chemicals (including from cigarette smoking) increases the risk of brain tumors in their offspring.

Due April 25th - Surrogacy goes Hollywood

[Hat tip to R. Alta Charo for alerting us to this this!]





Can't wait to hear the reviews...

The End is Near (or Not)

Here go the scientists, 'playing God' again, at least according to physicists Walter L. Wagner and Luis Sancho ~ From the Atlantic, a suit filed in District Court in Hawaii demands that the U.S. halt construction of the Large Hadron Collider (L.H.C.), the $8-billion particle accelerator on the Franco-Swiss border, on the grounds that it could cause the destruction of the earth, the solar system, or the universe.

James Gillies, head of communications at CERN, didn't seem to be overly concerned about the suit, stating that the laboratory, as of yet, had no comment on the suit.

(Photo by flickr User cyclequark under a Creative Commons license.)

Clinical Trials Miss Many Populations

A new report by the Chronic Disease Prevention & Control Research Center at Baylor College of Medicine, in conjunction with the Intercultural Cancer Council, brings the grim but not unexpected news that clinical trials for testing new drugs has routinely excluded or under-represented a broad category of people, including women, minorities, the disabled, elderly, and those who don't live near major research hospitals/urban areas. (And in fact, this very subject is one of the first conversations I remember having with Kathryn Hinsch - the fact that even animal research is done on male models.)

According to the report, there are about 80,000 clinical trials run in this country every year, and only about 1% of the population participates in them (working out to around 2.3 million people). The report didn't limit its critique to the statistical information of those participating in the trial, but also criticised wasted resources and duplicate efforts between government and private funding and the lack of training of IRB members. But the major focus of the report was on the constituencies of trial populations:

The research looked at cancer clinical trials and found that only 25 percent of patients in such trials were over the age of 65. In addition, older people were often excluded from studies focused on Alzheimer's, arthritis and incontinence... As evidence of the problem, [the researchers] honed in on a study of clinical trial composition that found that, between 1995 and 1999, blacks, Asian-Pacific Islanders, Hispanics and Native Americans together made up for less than 10 percent of patients included in new cancer drug trials. Under-representation of this sort, they say, leads to results that do not account for a host of factors -- genetic, cultural, racial, religious, linguistic, as well as variables related to age and gender -- that could have a huge impact on how well new drugs do in the real world.

The researchers also acknowledge that while there has been a lot of discussion about clinical trial populations and their make-up in recent years, very little has been done to redress the issue. To that end, the report actually also offers nine concrete policy suggestions to fix/improve clinical trials in the United States:

• government regulatory changes


• increased collaboration between government and private industry on clinical trial design


• increased community involvement in patient participation


• scientific journal oversight of patient breakdowns


• new, specialized training for review boards


• reallocation of research funding to avoid duplication and address disparities


• increased public education


• increased focus on easing the patient participation process


• guaranteeing insurance coverage for all related costs.

And on a personal note, we'd like to extend congratulations to friend of the blog (and fellow blogger) Daniel Goldberg, one of the researchers on this project and the leading quote in the Washington Post coverage of the story. Daniel's off enjoying the cherry blossoms in DC right now, but perhaps when he's back from his conference, he'll step over here and talk to us a little bit more about his research.
-Kelly Hills

dying from a broken heart

It's always the end of a beautiful story, a powerful love affair. The old and grey couple, together for decades, yearly celebrations of their affirmations and vows, marching through traditional gifts: coral, ruby, sapphires, gold. Surrounded by a field of family, generations stemming out from their love, she passes on, peacefully in the night, and he follows a few days later, his will to live gone without her. The perfect end to the perfect story.

Like most perfect stories, we dismiss it as fantasy. Fewer people these days stay married so long, have so many kids, have so much happiness. And of course, the myth of dying from a broken heart is just that: a myth.

Except, in "news I didn't really want to hear", a study by the Case Business School in London have found people really do die from broken hearts. Men are six times more likely to die in the year after their partner's death, while women are twice as likely to die in that same time. This study is different than those which have come before; a n older study in the American Journal of Public Health shows men more likely to die after their wife, but more from life issues (malnutrition, etc) than grief, while a different Johns Hopkins study published just before Valentine's Day 2005 shows that a rapid increase of stress hormones in highly emotional situations can essentially stun the heart and mimic a heart attack. Instead, this new study, sponsored by the Actuarial Profession, statistically proves people can die of a broken heart in the early stages of bereavement.

Thankfully, there is a bit of positive in this cloud of gloomy news: if the widow or widower survives the first year of mourning, the chances of dying (at least from the broken heart - ie, no clear medical reasons) decrease.

Now the question is: why are men more susceptible to dying from a broken heart, while women are more likely to suffer from immediate emotional shock, and how do we minimize both?
-Kelly

Popline's selective search engine (or, One more reason to hug your librarian)

Heard of Popline? Me neither, until one of our eagle-eyed readers directed us to a recent story in Wired. Turns out that Popline--as in, presumably, "population online"--is part of the INFO (Information & Knowledge for Optimal Health--don't ask me about how this acronym works; I don't get it either) Project. The INFO Project is funded by USAID, the US Agency for International Development.

Popline calls itself "your connection to the world's reproductive health literature." As the Wired story explains, though, it's your connection to only some of the world's reproductive health literature. What's missing? Access to the database info that concerns abortion. A librarian at UCSF noted that using "abortion" as a keyword yielded no results--odd, to say the least, for a reproductive health database.

When she wrote to the site administrators at Johns Hopkins, she was told that abortion-related terms had been made "stop words." This was consistent with current federal policy, which bans funding or promotion of abortion as a method of family planning in nations that receive US aid.

Hooray for the librarians of the world, I say: pointing out that it's wrong to restrict access to research data for political reasons (and doing lots of other good stuff too).

***
A subsequent update to the original story notes that the keyword has since been put back in play. Interesting to read, given how hard the Bloomberg School of Public Health at Johns Hopkins (which administers the site) tries to distance itself from the harebrained censorship strategy.

Thanks to tipster David Kugler.

***
Another edit, 4/9/08, to include this audio update from NPR.

Neurodiversity blogger subpoenaed in "vaccine-autism link" lawsuit

Kathleen Seidel, of Neurodiversity Blog, has been subpoenaed by the plaintiffs' lawyer in a lawsuit claiming that vaccines caused autism. It appears that this subpoena may be retributive action from the lawyer for the plaintiffs, whom Seidel criticized a few weeks ago.

She has since filed a motion to quash the subpoena because she is uninvolved in the Sykes v. Bayer case other than as an independent blogger who has discussed issues related to neurobiology and autism.

This action has many potential impacts for the medical and legal arenas, and opens up the possibility of harassment and undue barriers for bloggers if they can be required to produce the amount of paperwork required in a subpoena at the drop of a hat by a bitter lawyer who perpetuates fraud.

More from:

* Pure Pedantry

* Pharyngula

Testing positive for BRCA: then what?

Studies (here's one) have shown that women tend to overestimate the risk of breast cancer and underestimate the risk of other things that are more likely to kill them--such as heart disease.

But some women really are at substantially increased risk of breast cancer. Specifically, women who have certain identified mutations in the BRCA1 or BRCA2 genes are much more likely to develop breast and/or ovarian cancer. These mutations are rare in the general population, but one expert group recommends genetic testing for women with 2 0r more relatives with breast cancer before age 50, or 3 or more relatives with breast cancer at any age. (deBock et al, 1999).

If a woman has one of the mutations, she has a few options. One is to have more frequent, and more intensive, screening. Another is to have prophylactic surgery: removal of the breast tissue (mastectomy) and/or oophorectomy (removal of the ovaries). In a new book, Pretty Is What Changes, author Jessica Queller tells her story, which began with her mother's death from ovarian cancer and her own decision to have a radical mastectomy in her mid-30s. You can listen to an NPR interview with the author, and read an excerpt from the book, here.

Sex selection among Asian Americans

An article in the April 1 Proceedings of the National Academies of Sciences (abstract) suggests--based on analysis of data from the 2000 Census--that prenatal testing and abortion (as well as, potentially, preimplantation screening) are being used to deliver more male babies to Asian families in the United States. Listen to the story on NPR here, or read the AP story here.

Prior posts on the subject of sex selection (or "family balancing," if you think it's ok to do, or you happen to sell a related service) abound here on the blog: you can search at the top of the page to find them, and to learn about reasons the practice is declining in Korea; its legal status in India; and other aspects.

Newsweek asks, "What's it like to be a gestational carrier?"

On newsstands now; or read it here. This kind of story is a fine example of why we need empirical research to inform ethics: so we know what we're talking about.


hat tip: AJOB editors' blog

The American Heart Association Endorses "Hands-Only" CPR

In a shift away from the decades old recommendation that CPR include mouth-to-mouth resuscitation as well as chest compressions, the American Heart Association endorsed "hands-only" CPR in the latest issue of the journal Circulation.

According to the SFGate,

The new guidelines recognize that recent research has shown no real advantage to conventional mouth-to-mouth CPR in outside-the-hospital cardiac arrest cases. In addition, studies show that bystanders are often reluctant to perform mouth-to-mouth resuscitation on strangers, but are more likely to try rapid chest compression.

"We think that if we can double the number of bystanders who attempt CPR, we can save tens of thousands of lives every year," said Mary Fran Hazinski, a nurse at Vanderbilt University Medical Center and spokeswoman for the American Heart Association.

Some 900 people die every day from cardiac arrest and three quarters of those happen outside the hospital; the chances of survival outside a hospital setting hover around 5%. Unfortunately, while survival rate does increase if one is in the hospital, it's not by a staggering amount (and certainly not close to as effective as people believe CPR to be).

Apparently the new recommendation reflects three major studies that show little improval in survival rates with or without mouth-to-mouth resuscitation, and the hope is that more people will be inclined to perform CPR, even if "wrong", if they're not worrying about giving mouth-to-mouth as well as chest compressions.

These new guidelines are aimed at untrained bystanders, or to those who have been trained in CPR but are unsure they can perform it adequately. The message is, if there is any doubt, provide "hands only" CPR.

Although survival rates for cardiac arrest hover around 10 percent with CPR, Hazinski noted that rates have been pushed as high as 30 percent in cities, such as Seattle, that combine high bystander participation with a strong system of professional emergency medical response.

On a personal note, I feel like listing the Seattle rates are misleading, not in the least because Seattle has several major medical universities and teaching hospitals, as well as multiple medical assistant, nursing, and other programs. It's very hard to go more than a few feet without hitting someone with at least some medical familiarity in the city.

On top of that, however, I'm concerned at the general guideline shift. If it were just above, then perhaps it would be fine - I doubt we'll really see a huge increase in survival rates (especially when you consider long term, rather than short term, survival), but it will probably help a few people. The thing is, the guidelines are much more complex:

Heart Association guidelines

Q: Why is the Heart Association changing its guidelines?

A: Studies show that bystanders are reluctant to attempt conventional CPR, which involves chest compression and mouth-to-mouth resuscitation. New research shows that chest compression alone works just as well as traditional CPR. The thinking is, more people will try CPR if they don't need to include mouth-to-mouth breathing.

Q: Does this apply to all cases?

A: No. The new guidelines apply only to adult victims shortly after they collapse and have no pulse. They do not apply to children or drowning victims.

Q: Why not drowning victims?

A: Chest compression alone works only if there is oxygenated blood left in the body, but drowning victims have already consumed most of the oxygen in their bloodstreams. They need the air provided by mouth-to-mouth resuscitation.

Q: Why not children?

A: Cardiac arrest in children is rare. Most children whose hearts have stopped are suffering from respiratory arrest, from choking or conditions such as asthma. Like a drowning victim, they don't have oxygen in their bloodstreams.

So instead of "provide chest compressions", there becomes a list of people it's "safe" to give manual chest compression only to, and others that need the "fuller" form of CPR. I think instead of providing encouragement for people to get involved, the added complexity - did the person drown? Did they collapse from an asthma attack? Other breathing difficulty? How old is the person? - is going to discourage the general public from getting involved, especially those that were not inclined to jump in and help in the first place.

To encourage participation like this, rules/guidelines need to be clear and simple to remember - see the FAST acronym for remembering the signs of a stroke, and what to do. Simple, and successful.

I certainly hope that the new guidelines will help people, but I'm afraid that, in the end, the complexity is such that it will have no overall effect.
-Kelly

Pew: State of the Media released

Pew's 2008 State of the Media has been released, and while I haven't had time to read much of the report yet, Framing Science has a fascinating and sad breakdown of cable news topic coverage that adds a new element to the discussion Sue and I have been having about illustrating and popularizing science.

Collectively, the broad range of domestic issues including the environment, education, transportation, development, religion, domestic terrorism, health care, race -- everything but immigration -- made up 13% of the time on cable (compared with 26% on network evening news). The three topics of celebrity, crime and disasters, in contrast, accounted for 24% of cable's time.

To put that into perspective, if one were to have watched five hours of cable news, one would have seen about:

* 35 minutes about campaigns and elections
* 36 minutes about the debate over U.S. foreign policy
* 26 minutes or more of crime
* 12 minutes of accidents and disasters
* 10 minutes of celebrity and entertainment

On the other hand, one would have seen:

* 1 minute and 25 seconds about the environment
* 1 minute and 22 seconds about education
* 1 minute about science and technology
* 3 minutes and 34 seconds about the economy
* 3 minutes and 46 seconds about health and health care

While my initial reaction is "well, who cares about illustrating the story when the signal is getting lost in the noise", my second reaction is to wonder if again, we're seeing a lack of content because the media types don't know how to report it. Is it a matter of lack of education, lack of visuals, lack of knowledge, or (what I fear) lack of interest?
-Kelly

the democratization of DNA?

Some people say it's the democratization of DNA. Others are seeing dollar signs in the double helix. And some states, like New York, the option isn't even there. But in most states, you can now pick up a DNA test for a few bucks that will answer the question: are you my daddy? The paternity test by Identigene cost around $30 in store - with another $120 in lab processing fees. But it guarantees to answer, with a 99% accuracy, whether or not someone is the father of the child in question.

It's not a legal kit, it won't hold up in court - those are also available over the counter (or at least, over the internet), and cost quite a bit more money. But people are suggesting that the use here is not necessarily to prove paternity in a court case, but to try to prevent a case from going that far to begin with. A sort of pre-court negotiation tactic, I suppose. But I wonder how effective that's really going to be? I know more than one couple with an acrimonious split where, if this kit were used to prove paternity, the retort would just be that the woman was using the DNA of the "real" father, and not the man in question; it would just feed fires rather than calm them. Perhaps calmer heads to prevail...

I just don't see this offering the peace of mind it's being advertised to offer. If there's that level of suspicion and mistrust already, is a test going to help? I suppose it might, so long as it answers the affirmative - that the child is his son. But what does it do to trust in a relationship? What are the social implications? And what does it say that Identigene is offering the kits so inexpensively because of the anticipated volume of sales?

Maybe most importantly, what happens when a test result comes in, and it's not the result you want (either way)? There's no one around to talk to, or help you work through possible conflicting emotions (or anger). There's not necessarily a cooler head to prevail, and to get one, you're probably going to have to spend the money over again, to have an actual legal and verifiably untampered sample taken and tested. Which just means spending more money in the long run.

The more I think about it, the more this seems like it's taking advantage of people's fears without any sort of positive payoff for the person involved - but it's also early Monday morning, I haven't had coffee, and I am admittedly cranky. Does anyone else have another/different take on this? Can you see a positive here that I am missing?
-Kelly

Ben Stein's latest entry in the culture wars: creationism

Maybe I'm out of touch, but it was news to me that Ben Stein (former Nixon speechwriter, monotone teacher in Ferris Bueller's Day Off, etc. etc.--if you watch the video below, you'll get to hear him list his many accomplishments) is a strong proponent of intelligent design.



His new film, Expelled: No Intelligence Allowed, due out next month, is positioned as an expose of the controlling, elitist, (etc.) academic establishment, its enslavement to Darwinism, and the terrible punishment that scientists who promote ID have received at its hands. I just watched the trailer, which -- no kidding -- implies that the Holocaust was the result of the theory of evolution. I find it offensive, and also slightly ominous, that Stein is comfortable using imagery of the ovens for his political purposes here. It also appears that he had no compunctions about getting scientists to talk to him under false pretenses, as PZ Myers of Pharyngula reports here--with a funny followup here.

Nipple Rings, Respect and the Undertreatment of Women's Pain

Nipple Rings, Respect and the Undertreatment of Women's Pain

My adopted home town of Lubbock, Texas was in the news this week—no we haven’t arrested the Chippendale Dancers again http://www.lubbockonline.com/stories/051507/loc_051507037.shtml—this time the TSA Agents at “Lubbock International Airport” reacted like a bunch of junior high school boys when confronted with the shocking situation of a woman, Ms. Mandi Hamlin age 39, whose personal jewelry set off the metal detector. (helpful visual from Wikipedia!) http://en.wikipedia.org/wiki/Nipple_piercing Apparently this is not all that uncommon--a similar thing happened in Las Vegas to Nicole Richie. http://www.contactmusic.com/new/xmlfeed.nsf/mndwebpages/nicole%20richie.s%20nipple%20piercing%20causes%20alarm. But I digress.

I can’t tell the Texas story better than Ms. Hamlin’s lawyer Gloria Allred (more about her later) http://www.cnn.com/2008/US/03/27/nipple.ring.ap/index.html#cnnSTCVideo
But for anyone with a slow connection, here’s how the AP recounts it:
“[Mandi] Hamlin said she was trying to board a flight from Lubbock to Dallas on Feb. 24 when she was scanned by a TSA agent after passing through a larger metal detector without problems. The female TSA agent used a handheld detector that beeped when it passed in front of Hamlin's chest, the Dallas-area resident said.
Hamlin said she told the woman she was wearing nipple piercings. The agent then called over her male colleagues, one of whom said she would have to remove the jewelry, Hamlin said.
Hamlin said she could not remove them and asked whether she could instead display her pierced breasts in private to the female agent. But several other male officers told her she could not board her flight until the jewelry was out, she said.
Hamlin was taken behind a curtain and managed to remove one bar-shaped piercing but had trouble with the second, a ring. She said the officer gave her pliers to remove the ring, a process which caused a physical pain.” http://www.chron.com/disp/story.mpl/ap/nation/5658668.html .

The "For Grace" Foundation

I’ll admit my first thought on hearing about this event wasn’t about the Women’s Bioethics Blog. But as the week and the story have progressed and, the theme of lack of respect for women led me to see a connection to a conference this May called “Women in Pain: Gender Matters” http://sccpi.coh.org/WIP/WIP8.htmsponsored by a non-profit-organization, “For Grace” whose mission is “to ensure the ethical and equal treatment of all women in pain.” http://www.forgrace.org/women/in/pain_home.

I do not know anything about the “For Grace” foundation beyond their web site, but I do know that the documented failure of the medical profession to listen to their female patients and to treat their pain adquately is, or at least should be, a core issue in bioethics and needed to be discussed in this blog.

Professor Diane Hoffman

The "For Grace" Foundations' conference caught my eye because the key note speaker, Professor Diane Hoffman of the University of Maryland Law School is someone for whom I have the highest possible respect. Professor Hoffman has done extensive research and written important articles about legal and ethical issues in pain management.

Thanks to the generosity of the University of Maryland in making their faculty's work available on-line, you can read a terrific article by Professor Hoffman and Dr. Anita Tarzian, also of the University of Maryland, entitled “ The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain” Journal of Law, Medicine and Ethics 29 (2001) 13-27. http://digitalcommons.law.umaryland.edu/cgi/viewcontent.cgi?article=1144&context=fac_pubs

It all Comes Back to Respect

So here’s the link with the Lubbock Nipple Ring Incident: the issue here is respect. Women’s accounts of pain are not believed, and therefore not treated, because we are not respected. The TSA Agents in Lubbock did not respect Ms. Hamlin's pain or her dignity and neither do many of the people making snide comments about her at various internet sites. It always strikes me as a cheap shot to comment on a situation where a woman is embarrassed or endangered by saying “If it had been a man in a similar situation” but here is one that warrants it. Can you imagine a man being handed a pliers and told to “get it out” under similar circumstances?

The lack of respect for women evidenced by the TSA agent’s actions didn’t stop when Ms. Hamlin left Lubbock. When I first heard the story--through a posting on the Feminist Law Professors Blog!--I got right on the internet and the first account I found was on TMZ. http://www.tmz.com/2008/03/27/allred-goes-tit-for-tat-with-the-tsa/3

The Blogosphere Chimes In to Criticize the Victim

As bizarre as the story itself was, what became most fascinating to me were the comments made by readers.

I appreciate that anonymous web comments are often brushed off as harmless. I've never thought that and have always been struck at the horrible, crude things people say about women at relatively mainstream sites. Rosie O'Donnell often points out that of all the things people could not like about her, the most common ephitat in anonymous spewing of venom is "Fat." This Nipple Ring story triggered a similar reaction. People wrote, again and again, that Ms. Allred, who, as a private attorney, has defended the civil rights of women for over 30 years, is “an old bag” and a “media whore” Many questioned what an “Old Bag” like Ms. Handlin was doing with nipple rings. Excuse me? Is John McCain an “old bag?” Is it aesthetically offensive for a woman over 25 to appear in public? Apparently so. “Old Bag” and “whore” are the crudest printable words that can be said about a woman in the English language. After the insults came the disbelief. Many asserted, despite the TSA’s admission that the facts of the event were true, that the woman was ever asked to remove her nipple ring? And even more interesting, many readers expressed disbelief that removing the rings caused Ms. Hamlin pain.

If I am expected to discount these comments as having nothing to do with what people think about women, I would like to know the neuroscience supporting a conclusion that things people say are not things they think.

Here's a little thought experiment I tried. I am following the NCAA Final Four very closely and will be upset if my team, UCONN, does not win. But, if that happens I won't think the Chinese Government has fixed the games. And since I won't think that, it is hard to imagine a circumstance under which I will say or write it. But the things people wrote both about the victim and her prominent attorney, Gloria Allred, reflected thoughts in their heads. And they are ugly thoughts.

A Long History of Treating Women Differently

And here we are back to women, pain, respect and belief. The medical profession's track record on disbelieving women's pain is extensive. There are entire diseases, such as fibromyalgia and chronic fatigue syndrome, whose existence is questioned because they appear to disproportionately affect women.

Treating men and women differently when it comes to health care is so common that it is seldom questioned. There are many examples in the field of Assisted Reproductive Technology where doctors often express views on who should and should not be a mother. For example, the California Supreme Court is currently considering whether a fertility clinic has the right to refuse its services to a lesbian woman seeking to have a baby without benefit of a husband if this violates the doctor’s religious beliefs. http://www.lambdalegal.org/our-work/in-court/cases/benitez.html Is it disrespectful to ask whether there are there any doctors refusing, for religious reasons, to prescribe Viagra to unmarried men because they have religious objections to sex outside of marriage? How is this O.K.?

Twenty Years of Women Going to Medical Schools Hasn't Really Helped

Many people believed that women's health care would change dramatically when women started going to medical school in numbers equal to men. Well, yes and no. There are thousands of terrfic, empathetic female physicians We are all lucky for their existence, skill and dedication. However, if the opening of the medical profession to women was going to change attitudes and practices it would have happened already. Why hasn't it? Well, first because it is beyond unfair into fanciful to expect that the existence of women doctors is enough to change the fundamental power structure of a profession or indeed a society. Second, people learn what they are taught. Unfortunately it is not uncommon for women doctors to absorb the same prejudices as men about their women patients’ accounts of pain.

Moreover, even if every woman doctor was committed to believing women, despite everything they learn through from their mentors, few are in any positions of power. 17 of the 129 Deans of Medical Schools in the United States are women. http://blog.case.edu/case-news/2008/03/17/davisaward and I suspect the numbers of women who are Chiefs of Staff in large medical centers is even lower.
(gain insight into this phenomena by reading this story about Dr. Elizabeth Nadel's withdrawal from consideration for the Deanship of Harvard Medical School because she did not want to leave her husband in Washington, DC.)http://www.boston.com/news/local/articles/2007/07/12/harvard_medical_dean_is_named/)

And here is more bad news. Specializing in woman’s health is not the path to status and power. As in every other field imaginable, including legal academe, women seeking advancement are highly discouraged from spending their time on fringe topics—like the health and well-being of 50% of the world's population.

In Conclusion

Please save your time and don’t remind me that women today shouldn’t “have” to be interested in women’s health (or women’s rights). Why shouldn’t a woman be just as interested in prostate cancer as breast cancer? Isn’t every patient important? You’re right, they shouldn’t have to. And who knows, maybe the past is not prologue to the future and the women graduating from school today (you know them, the ones who don’t have to worry about the right to contraception because “it’s always been there” and who don’t have to support women candidates because they are “beyond” Feminism) will make things all better. Maybe it is only a matter of time before all of these inequities are resolved through their hard work and determination. But while we’re waiting, the need is here and the time to address it is now.

Whether it is TSA agents in Lubbock or Reproductive Technology Docs in Los Angeles, women are still treated differently and there is a lot more work to do. Please do not dismiss the incident which sparked this post as irrelevant since it happened in Lubbock, Texas. Believe me, save the dust storms and the tumble weeds it is more like everywhere else here than it is different. Rather, it should remind you that the struggle to respect women as they seek health care, and live their lives, is still very much in progress and while all are welcome to join in, it is up to women to step up and advocate for change.

Jennifer Bard

Bonus: Enjoy Lubbock native Natalie Maines and the Dixie Chicks performing “Lubbock or Leave it.” Lubbock International Airport plays a prominent role in the song!
http://video.msn.com/?mkt=en-us&vid=c9fbdec2-4634-4ede-a25e-d51a95eaf8b9&from=rss05

The many faces of Wal-Mart

Tucked into yesterday's local paper was a junk-mail circular advertising Wal-Mart's new "$4 Prescriptions for Everybody" program, and my husband just spotted it on the kitchen counter. "Hey, cool," he said, "It's great they're doing that. Maybe they're not so bad."

But actually, yes. Yes, they are.

There's a decent chance you have already heard or read about Deborah Shank's being sued for reimbursement of medical expenses by her former employer, as the tale seems to have taken on a life of its own in blogworld ... but in case you haven't, here's the story from The Wall Street Journal.

Anybody out there still think the existing "system" for health care finance is working? Anyone? Maybe it depends on who you are. For example, it seems to be working pretty well for Wal-Mart ...

Laugh for the Day: Creationists vs. Angry Atheists

[Via Orac's Respectful Insolence blog] Orac comments that he can't make up his mind about this YouTube clip, whether is it's a slam on Richard Dawkins or a slam of the creationists' perceptions about Richard Dawkins. ProScience? -- I'm not so sure -- personally, I think it's slam of all credos or dogmatism and shows that neither side has a monopoly on arrogance:





But, hey, I'll take my laughs where I can get them and this is funny~ my favorite part: "If I were dyslexic, I'd even hate dog, too." :>)

Postgenderism: Transcending the Dualistic Notions

A few months, some of our colleagues over at IEET had drafted a paper about overcoming gender, about which we had blogged and which provoked some criticism. Many of our readers, in response to our poll, felt that gender should be either embraced or transcended, but very few felt that gender should be overcome. Authors Dvorsky and Hughes took said criticism to heart and revamped their paper, and came up with something more balanced -- I really think this article is so much better than the previous draft and I like the philosophically monistic, wholistic approach (dare I say, Buddhist?). The essay is forthcoming in an edited book on gender and reproductive technologies and here is the abstract:

Postgenderism is an extrapolation of ways that technology is eroding the biological, psychological and social role of gender, and an argument for why the erosion of binary gender will be liberatory. Postgenderists argue that gender is an arbitrary and unnecessary limitation on human potential, and foresee the elimination of involuntary biological and psychological gendering in the human species through the application of neurotechnology, biotechnology and reproductive technologies. Postgenderists contend that dyadic gender roles and sexual dimorphisms are generally to the detriment of individuals and society. Assisted reproduction will make it possible for individuals of any sex to reproduce in any combinations they choose, with or without “mothers” and “fathers,” and artificial wombs will make biological wombs unnecessary for reproduction. Greater biological fluidity and psychological androgyny will allow future persons to explore both masculine and feminine aspects of personality. Postgenderists do not call for the end of all gender traits, or universal androgyny, but rather that those traits become a matter of choice. [Emphasis added] Bodies and personalities in our postgender future will no longer be constrained and circumscribed by gendered traits, but enriched by their use in the palette of diverse self-expression.


Download the whole essay here in PDF form and let George and Jay know what you think!