This is not your typical blog. We have recruited scholars and public policy analysts from around the world to provide daily news and commentary on the implications of bioethical issues for women. We hope you’ll bookmark this page and let us know what you think: just click on the comment link at the bottom of each post to join the discussion. To sign up for the WBP newsletter, visit our homepage at www.womensbioethics.org or follow us on Twitter at http://twitter.com/khinsch
Disclaimer: The opinions expressed on this blog are solely those of the individual contributors and do not necessarily reflect the official policy positions of the Women's Bioethics Project.
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.
You might think of it as the ultimate eco-meal and a solution to Michael Pollan's concerns in his NY Times essay and in his book, the Omnivore's Dilemma. (Not to mention that it would also be a pretty cool solution to problem of astronauts getting enough protein while on long space journeys). Alexis Madrigal of Wired writes: "In five to 10 years, supermarkets might have some new products in the meat counter: packs of vat-grown meat that are cheaper to produce than livestock and have less impact on the environment." The full article accessible here.
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.
[Hat tip to Jay Hughes] An article in the Washington Post points out that despite Congress creating a panel (known as the Interagency Coordinating Committee on the Validation of Alternative Methods, or ICCVAM) over a decade ago to explore alternatives to animal testing, little has changed. "Instead of acting as an advocate for companies and nonprofits proposing non-animal tests, the panel has become an obstacle, animal welfare groups say. They point to Europe, where a similar panel has approved 34 alternatives to animal tests and has another 170 in its pipeline. Critics say the U.S. panel is slow and favors older animal tests that have never gone through the same rigorous scientific review."
A recent NYT piece by Amy Harmon highlights a law-enforcement practice called "surreptitious sampling," which refers to the collection of an individual's DNA without their permission or knowledge. All of us are leaving traces of our DNA all over the place, all the time: on drinking glasses, kleenex, soup spoons, cigarette butts, etc. If the police wanted a blood sample, they'd have to get a court order; but these discarded or overlooked materials may be gathered by US law enforcement agencies--without probable cause or any oversight from the courts--and used to match samples collected in criminal investigations. If the DNA from the murder scene matches the DNA on your soda straw, you're in big trouble.
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.
From the UK Telegraph today, deaf couples could be allowed to screen their embryos in order to select a deaf child after protesters persuaded the Government to remove references to deafness from the proposed Human Fertilisation and Embryology Bill.
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.'
Ran across this story from The Scientist (free registration required) about the results of a an essay contest sponsored by the American Society for Human Genetics (ASHG). The contest elicited high-school students' understanding of human genetics. The results are dispiriting, to say the least. Here's an outtake:
"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?"
"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?"
Here's the original article from Genetics, for more information about the ASHG contest.
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.
Paul Krugman of the NY Times pens this morning an editorial "Health Care Horror Stories", something of a theme on this blog and something we've blogged aboutbeforenumeroustimes. His column starts out:
"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.
And Krugman points out that while many of us are excited about the upcoming elections and the nominees, let's not lose track of what's important here -- that these tragedies can and should be prevented and it doesn't matter whose idea it is. Being a progressive also means being compassionate; and that means believing that we need universal health care.
Leah Ceccarelli has just penned a fascinating analysis of how so-called scientific controversies are created to serve political purposes:
"With all the sophisticated sophistry besieging mass audiences today, there is a need for the study of rhetoric now more than ever before. This is especially the case when it comes to the contemporary assault on science known as manufactured controversy: when significant disagreement doesn't exist inside the scientific community, but is successfully invented for a public audience to achieve specific political ends. Three recent examples of manufactured controversy are global warming skepticism, AIDS dissent in South Africa, and the intelligent design movement's 'teach the controversy' campaign."
The entire essay was published in the science policy journal of the Center for American Progress. Dr. Ceccarelli is an associate professor in the Communications Department at the University of Washington. She reaches rhetoric and is the author of the award winning book Shaping Science with Rhetoric.
According to a new report in Nature, one in five people surveyed have used drugs to boost their mental cognition - and while we know that most people using brain boosting drugs recreationally/academically are students in the 18-25 bracket, there is a (perhaps not) surprising number of academics reporting casual/non-medical use of drugs like Ritalin and Adderall. The study was informal, nonspecific, and international, and most of the 1400 people who responded said that they worked in some medical or education related field, and took the drugs to improve their concentration.
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. -Kelly Hills
When people hear that I write for this blog, they almost immediately ask why it's necessary to have a women's bioethics blog - what's the point to having something written primarily for women, by women, about issues that affect women? Haven't we moved beyond and to a point where gender shouldn't matter, we're enlightened enough, and so forth? I try to take it as a good thing, that people want to think this, while simultaneously think that some things are so set into society that people don't even see why it would be necessary.
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:
"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.”
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. -Kelly Hills
An angry blogger in the UK, angry at drugmaker GSK over controversial cases of life & death side-effects (suicide) for depression sufferers resulting from the use of its drug Seroxat--the trade name in Britain for Paxil--posted this protest video in February. From Pharmalot.com.
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.
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.]
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.
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.)
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
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
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.
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.
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.
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.
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.
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.
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'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
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
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.
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.
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 ...
[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." :>)
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.
Do you envision the future as a time when your physical body will no longer be the limit to your abilities? Does the idea of living forever (or at least, living a few more years in good health) tantalize your mind? On the flip side, would you like to revert back to a simple, down to earth agrarian lifestyle? Should the invention of the wheel - or at most the horse and buggy- have been the final frontier in technological advancement? Take this quiz to find out where you stand!
These questions should unearth your inner feelings about technological advancement and its role in our future. While answering the questions, assume that cost is not a barrier and that the technology is widely available. Also, if a question asks you about living a great long time, assume that your years will be spent happily on the shore of your favorite beach rather than in a hospital.
Following on the heels of Kelly's post about science communications and the general public: The Amygdaloids! This is a group of scientists who also happen to be musicians. They write and perform funny, educational tunes about various aspects of brain function, including emotional regulation and memory. And that's a good thing! Check 'em out.
And so now I have to climb up on my soapbox for a minute--not that I think Kelly said the things I'm about to take issue with, but her post got me all revved up.
I wholeheartedly reject the idea that presenting scientific information in a manner that can be understood by non-scientists is (necessarily) "dumbing down." On the contrary, it takes a special set of skills to do it effectively and responsibly. And if you can make it interesting and fun, on top of that? Better yet.
I also reject the idea that the average person is just too dumb to understand complex scientific concepts (while freely admitting that there are certainly more advanced/esoteric levels of understanding that the average person can't grok without lots more training ... but, then, I would also suggest that most people don't actually need that level of understanding anyway).
Both of these positions -- "explaining = dumbing down" and "people are too dumb to get it anyway" -- tick me off, frankly. I believe that scientists have an obligation to educate the rest of us, and that shirking that duty speaks of laziness, elitism, or both. So there.
Yes, it's a problem that the American public doesn't understand science well enough to play their part in a participatory democracy where billions and billions* of dollars are spent on science. So let's do something about it! Let's stop penalizing scientists --"they can't possibly be doing cutting-edge science, or they wouldn't be mucking around with the public "-- who try to bring regular folk into the magic circle by sharing their knowledge and excitement about science. Who is science for, anyway?! Let's train scientists to articulate what they do and why it's important, so that they can make cogent arguments in favor of funding priorities and public policy, and maybe also entice youngsters into science careers.
This is what I *heart* about education: everybody wins! So why the resistance, I wonder?
edited to add this link to an xkcd cartoon that makes the point more directly. I'm with Zombie Feynman! __________ *with a nod to Carl Sagan, who did his best to bring way-cool science to the masses and was downgraded in the scientific community as a result.
Finally got around to reading The Last Town on Earth, by Thomas Mullen. The novel is set in the fictional timber town of Commonwealth, Washington, during the flu outbreak of 1918*. It's the story of how a community founded on a socialist/organized labor vision decides to shut itself off from the rest of the country, in hopes of self-preservation. (Some towns actually tried this, it turns out.) I was expecting a story about quarantine, and hoping for some grist about public health ethics in the case of a pandemic, but the book actually offers more than that. It's chock-full of moral dilemmas and questions of duty, in fact. It's a quiet, beautifully written book, not a thing overdone about it. Set against the background of the First World War, Last Town raises questions about how individuals and communities make decisions when we fear for our safety and the welfare of our loved ones. I don't want to give too much away, but the flu isn't the only threat the people of Commonwealth face. The book made me wonder where, exactly, lies the line between self-preservation and harming others, either directly or by refusing to aid them.
Want more? You can listen to NPR's Liane Hansen talk with Mullan about the book on Weekend Edition. ______________________ *That was the epidemic that killed about 100 million people worldwide, and (unusually so) it was more deadly in the healthy young and middle aged, rather than babies and elderly people. If you wanna know more about that, I recommend The Great Influenza, by John Barry, and -- for those with a shorter attention span -- Flu, by Gina Kolata.
io9 explains how the top scientific discovery of 2007 was nearly overlooked by the mass media (and thus general public) because no one could figure out how to simplify it:
A researcher named Steven Reiner at University of Pennsylvania proved that the human body fights disease with two kinds of immune cells (called T-cells): some that fight the invading microbes, and some that exist just to keep a record of how to fight those microbes in the future. Those "memory" cells are what this researcher revealed, and their mysteries are still being unlocked.
Very interesting. But I have to wonder - what do we miss because people can't figure out a snazzy graphic to go with the report or story? I know when I write blog posts, I scrounge for appropriate art, sometimes creating my own and always grateful when a site like io9 takes care of it for me. Why? We're visual creatures, and I think that the art makes a story more interesting, and in the case of science, can make a complicated concept easier to understand. (I would have never passed geometry without the coloured 3D shapes we had to play with.)
Combined with wondering what we miss, I wonder at how much things have to be dumbed down in general for American mass market media consumption, and if anyone has compared science reporting in different countries to see how they vary. Do countries which have a higher level of general scientific literacy in their population have the same media reporting habits, or is their media more rigorous? Or more importantly, should we be worried that the mainstream media feels it can't even try to cover science without cutesy art?
Art in bioethics is, itself, a somewhat tricky subject. How, precisely, do you illustrate neuroethics? Informed consent? Agency? If you're talking about fMRIs, I can certainly point you to some interesting graphics - likewise for IVF, fertility, abortion. It's the abstracts where we run into potential problems, the concepts that cannot be so easily summed up in a photograph of a pregnant belly.
Are important, but less visually easy (or stunning, a la the photo of the mouse with an ear on its back) stories in bioethics being passed over because of their lack of easy illustration? And is there anything that can really be done about it? -Kelly
This story in the Washington Post gives a decent overview of the growing number of firms out there who promise to improve our lives by giving us insight into our individual genetic profiles. Current players who offer screening include 23andme, Knome (which its founder, Harvard geneticist George Church, wishes we would pronounce "know-me"). Then there are those who claim to provide genetically-based information or advice, ranging from ScientificMatch.com (your DNA is used to find you a suitable date) to Genelex (which offers a mishmash of testing options, ranging from diet advice to predictive testing for periodontal disease) to Navigenics (which claims, "your genes offer a road map to optimal health"). I'm not even going to get into the outfits that offer to trace individuals' ancestry.
Here's a fact about all these businesses: not a one of them is subject to FDA oversight. So all these claims about health benefits, etc., resulting from their services can be completely false (or at least, not based on evidence), and nothing can be done about it. If you read even a *tiny* bit of the scientific literature on genetics and "personalized medicine," you will be struck by how few experts make such claims, at least for the near term. Instead, they talk about the promise of genetics ... while acknowledging that there's an awful lot we don't know. (Along these lines, see this commentary from last week's issue of the Journal of the American Medical Association, featuring none other than the head of the National Human Genome Research Institute.) Bottom line? Given that most health conditions and risks seem to be multifactorial, involving multiple genetic factors as well as environmental influences that we don't yet understand, this stuff is a long way off.
In the meantime, though, consumers should be protected from grossly overstated or unproven claims. Whether that falls to FDA or to someone else (though the Consumer Protection Agency probably has enough work to do at the moment -- lead paint in toys, anyone?), it seems to me the Feds ought to step up on this one.
Threatened with a revolt from within his cabinet--particularly from his Roman Catholic ministers--UK Prime Minister Gordon Brown has announced that he will permit his Labour ministers and MPs a "free vote" on three ethical aspects of a proposed new law governing fertility and embryo research. The three controversial provisions would permit the creation of human/animal hybrid embryos for research; permit embryos to be tested for compatibility with a child suffering a serious medical condition, in order to facilitate the creation of "saviour siblings" who might donate organs or blood to the ailing child; and instruct physicians, when determining whether a patient is a proper candidate for IVF, to consider the need of the child for "supportive parenting," rather than for "a father," as the law currently requires. The votes of conscience will be permitted only as the various provisions are read out of committee, for inclusion in the final draft legislation. When it comes time for a vote on the entire law, Labour MPs and ministers will be "whipped" into voting with their government, even if they opposed the inclusion of some or all of the controversial provisions. A Guardian article on Brown's decision appears here. Brown's letter to his MPs, announcing the "free vote," is here.
A little late night posting before I try to re-regulate my sleep schedule (again). I was checking my Google alerts, which are truly fabulous things I recommend to anyone, and the good Dr. McGee popped up in a blog written by a former student of his, Kipum Michael Lee. Now, before I mentioned the content of Lee's post, let me say, having no clue who this person is, I just spent an interesting half an hour browsing his professional website. He does something called interaction design, which I've never heard of, and appears to be a cool blend of design, architecture, and technology. If you have a few minutes, it's worth checking out - not just for the 12:30am and I'm tired so it's really cool, but because I think we're going to see, more and more, people moving towards these interdisciplinary fields that merge interests. Why choose something boring like philosophy, when instead you can study, say, the philosophical implications of architecture and the psychological and ethical impact that has on residents? (And while I wish I could claim credit for pulling that out of my hat, in reality a former student is studying just that, via the graduate department of architecture at his university.)
Right - I was going to focus. So Kip has a blog. Kip mentioned his former Penn professor (McGee), as well as praise for their ethics curriculum, and that brought it to my mailbox. What was Kip blogging about? It seems the nightclub Baja Beach (two European locations) has decided to forgo VIP cards and instead has gone with VIP RFID chips. They have the RFID tag implanted and it serves as their access to the club, as well as payment for their drinks. Because they are a VIP, it's free club entrance for life, free access to the VIP lounge, and can order their drinks all night long, to have the cost of drinks subtracted from their bank account (linked to the RFID tag) at the end of the night. In addition to bank account information, the tag apparently includes a picture for identification, as well as full name. You can see a full interview with Conrad Chase here, including a rough count of numbers:
Chase considers this something unique, like a tattoo or body piercing - just the next step.
So Kip asks a very typical question, which is not "can we do this" (obviously, we can), but "should we do this"? He raises the point that people with the technology to make things happen do need to be the ones who lead the discussion in the ethical applications of the technology, and then wanders off into a consideration of what it means to be human. Now as something of a devotee of both DIY Biotech and Donna Haraway's A Cyborg Manifesto (warning: postmodern feminist content at that link!), I don't fear the cyborg - I embrace it, and think in many ways we are already there. I do, however, think there are questions to be asked about this RFID implantation technology.
First, and foremost, I don't believe Chase's claims that the information is not accessible outside of the club. There is something on the RFID tag that is being read every time they walk in - something that identifies them. Now it might be that the credit card information of the patrons is left on an in-house server and the RFID tag only provides a number to correspond with the identifying number in that server database, but there is something linking the RFID tag and the credit card to that person. Likewise, there's something on the chip allowing a computer to pull up the person's name and face as they walk in the door.
Privacy advocates are understandably concerned about this - for maybe a couple of hundred dollars, I can easily build a scanner that would allow me to pick up the RFID signals being broadcast from any of these implanted chips. Even if I had to sit in the club itself, to have access to the chips and the servers housing the desired data (names, credit card numbers - assuming none are stored locally), it would be possible to do - and walk out with enough information to have an online shopping spree or three. Identity theft becoming one step easier.
But admittedly, I don't think the nightclub crowd will ever grow large enough that it'd be a worthwhile (and illegal) practice to pursue. Instead, I worry more about the broader social implications. As anyone who is familiar with social networking theory knows (or has read Malcolm Gladwell's book The Tipping Point, trends often move into social acceptance by first beginning on the edges, in a club or other "scene". Once adopted by someone who has social capital in the larger group, whatever was edgy and new suddenly explodes into mass acceptance and popularity. Tattoos, piercings, clothing, all sorts of trends - and what happens when the trend moves to RFID tags that broadcast information to anyone who's listening? Your MySpace, Facebook, homepage, LiveJournal, blog, email, full name, school, gender, sexual preference - any of the information that people willingly put on these social network sites, suddenly on a chip and broadcast not to the internet at large, but the small world in their immediate surroundings.
Then what?
It's an interesting question, reaching beyond the idea of RFID tags to track children, pets, or your medical data (other currently used applications of the technology). What do you think - the future, or simply overblown fears? -Kelly
[Hat Tip to Jay Hughes] "My decision to bear a child as a transgender male has been met with discrimination and outright derision by health care professionals." From Alternet, a story from an individual who is making maximum use of his bodily potential:
"To our neighbors, my wife, Nancy, and I don't appear in the least unusual. To those in the quiet Oregon community where we live, we are viewed just as we are -- a happy couple deeply in love. Our desire to work hard, buy our first home, and start a family was nothing out of the ordinary. That is, until we decided that I would carry our child.
I am transgender, legally male, and legally married to Nancy. Unlike those in same-sex marriages, domestic partnerships, or civil unions, Nancy and I are afforded the more than 1,100 federal rights of marriage. Sterilization is not a requirement for sex reassignment, so I decided to have chest reconstruction and testosterone therapy but kept my reproductive rights. Wanting to have a biological child is neither a male nor female desire, but a human desire.
Ten years ago, when Nancy and I became a couple, the idea of us having a child was more dream than plan. I always wanted to have children. However, due to severe endometriosis 20 years ago, Nancy had to undergo a hysterectomy and is unable to carry a child..."
Perhaps not the best centerpiece for the next family gathering (unless your family is like mine, in which case it'll be a competition to see who can get the display open first to see how the heart actually works...), but a cool piece nonetheless, created by artist Billy Chasen for the American Heart Association's 2008 Heart of New York Gala.
Billy has some other cool work worth browsing, too, including an exploded iPod set in resin that still works, and a marvelous and rather mindboggling piece called Weight of Words. He also has an interesting blog that covers ground from social commentary to art (which you might argue are one and the same). -Kelly
Interesting story in Sunday's NYT Magazine. It's about a new website, PatientsLikeMe.com, that goes beyond the usual online disease support groups to actual data collection. Currently offering communities for amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease), multiple sclerosis (MS), HIV, "mood," and Parkinson's, the site gathers data on treatments and side effects and turns it into aggregate data that users can use to see how their health status, symptoms, and treatment plans compare with those of others. The company was named a Top Health IT Innovator last year; CNNmoney.com has named them one of "the next disruptors," the 15 companies that will change the world.
More than being just a "support-plus" site, though, PatientsLikeMe could have some important implications for the way health care works. First, and most obviously, it puts patients in a much more active role--and not just in terms of adhering to their doctor's instructions, but in investigating whether their prescribed regimen could be improved. Second, it could be a parallel track to current ways of doing research: outside academia, outside clinical trials, bodies of data being built up. There's already a DIY trial on lithium for ALS going on among members. One key difference here is that the subjective data patients consider salient could be different from, and not included in, existing study designs. Third, PatientsLikeMe is a for-profit company ... it's seeing pharmaceutical companies as its financial lifeblood, which raises the usual privacy (etc.) concerns.
Overall, the model could challenge our current ideas of who does what in health care; the validity of data from outside the research establishment; how IT and the internet can better serve health needs -- beyond just transferring existing processes from paper to electronic media; and the need to protect personal health information and whether the general public is, or should be, afraid of this kind of radical openness ... lots to think about.
According to a 
When people hear that I write for this blog, they almost immediately ask why it's necessary to have a women's bioethics blog - what's the point to having something written primarily for women, by women, about issues that affect women? Haven't we moved beyond and to a point where gender shouldn't matter, we're enlightened enough, and so forth? I try to take it as a good thing, that people want to think this, while simultaneously think that some things are so set into society that people don't even see why it would be necessary.
A 
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.
In a shift away from the decades old recommendation that CPR include mouth-to-mouth resuscitation as well as chest compressions, the 
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, 
