Bioethics on TV: What is being portrayed?

(Image credit: ABC/Eric McCandless)

It is likely no surprise to regular viewers of the television medical dramas “Grey’s Anatomy” and “House, M.D.” that bioethical issues and the conflict they create are frequent components of the storylines. These programs aim to entertain, and the drama inherent in contentious bioethical issues seems a natural fit. Furthermore, these programs aim for realism, frequently employing physicians as consultants to check their medical facts. This combination of realism and frequency raises concern that these medical dramas have the potential to affect viewers’ beliefs and perceptions of bioethics. In fact, previous studies have demonstrated this phenomenon in other areas, including organ transplantation and obesity.

With that background, I, along with Dr. Ruth Faden and Dr. Jeremy Sugarman at the Johns Hopkins Berman Institute of Bioethics, aimed to systematically describe the bioethical and professionalism content of one season each of the widely watched medical dramas. While we would have liked to include “E.R.,” it wasn’t available on DVD for the same time frame. In addition, “Nip/Tuck” and “Scrubs” were excluded because of their dissimilarity to the shows analyzed. Our goal was simply to document the bioethical and professionalism content of these two programs as a starting point for a discussion about their possible impact on the perceptions and beliefs of the general public, as well as their utility as a tool in the education of medical and nursing students.

Perhaps unsurprisingly, we found that both “Grey’s Anatomy” and “House, M.D.” are rife with depictions of bioethical issues and egregious deviations from the norms of professionalism. We identified 179 depictions of bioethical issues, which we separated into 11 categories, of which the top three were consent, ethically questionable departures from standard practice, and death and dying. We also identified a total of 396 deviations from normal professional interactions, classifying those into categories of “respect,” “sexual misconduct,” “integrity and responsibility,” and “caring and compassion.” Most of the professionalism incidents were negative, which is less striking when one considers the fact that these programs are more akin to soap operas than documentaries. Importantly, we did not try to evaluate the possible impact, whether positive, negative, or neither, on viewers of these programs. Rather, we hope that our study will provide the groundwork for other studies assessing exactly that.

I’d personally like to encourage any interested readers to take a look at the full text of our article, “Bioethics and professionalism in popular television medical dramas,” which is available in the April issue of the Journal of Medical Ethics. In addition, more information about the wide variety of ethical issues investigated by the Johns Hopkins Berman Institute of Bioethics can be found at our website, http://www.bioethicsinstitute.org. Finally, more information about media and health can be found at the Kaiser Family Foundation website.

Thanks for letting us share our work with the thoughtful readers of the Women’s Bioethics Blog!

-Matt Czarny

Patent protection for breast-cancer genes may be ending

As reported in the New York Times and elsewhere earlier this week, a federal district court judge has invalidated the patents held by test manufacturer Myriad Genetics on the BRCA1 and BRCA2 genes.

Mutations in these genes play a role in a small proportion of breast cancer cases -- that is, most breast cancer does not appear to have a strong genetic contribution, and genetic testing really makes sense only for women with a strong family history, as explained here -- but women who have one or more mutations have a substantially higher risk of developing breast and/or ovarian cancer. Men with these mutations stand an increased chance of getting prostate cancer and (in rare cases) breast cancer.

Myriad's most comprehensive test, which looks for mutations in both the BRCA1 and BRCA2 genes, costs more than $3,000. Critics charge that Myriad's monopoly and refusal to license the test has had negative effects on patient care, in that some women who may benefit from testing cannot afford it, and confirmatory testing is not available from another source.

The suit was brought by a group of patients, advocacy groups, scientific organizations, and the ACLU; it is almost certain to be appealed. The ruling contradicts more than 20 years' worth of cases that have allowed gene patenting. It will be interesting to see where this goes. GenomeWeb has a nice summary of the blogosphere's reaction here, and Genetic Future (as usual) has some smart commentary too.

UNESCO Call for Papers - Latin Bioethics

The journal Revista Redbioética/UNESCO is a biannual publication that aspires to constitute a space for debate in the field of Latin American and Caribbean bioethics, by the spreading of regional perspectives and the treatment of their significant problems, included in the global bioethical frame. Original papers of theoretical or field research will be accepted for publication, and also reviews and updates, commentaries of books and papers, interviews and letters to the editor. Commentaries on news in the bioethics area will be welcome in the journal’s blog. The journal proposes a wide look on the field of bioethics including the areas of health (individual, public/global), biotechnological development dilemmas and their consequences in our region, genetics development and their derivations, environmental problems and economical and social development, and the cultural conflict between its usual economicist and reductionist focus and other holistic views historically present in our region such as those of the indigenous peoples.

Papers may be published in Spanish, Portuguese or English. Instructions for Authors here. Proposals should be sent to: revistaredbioetica@unesco.org.uy

A lesson learned the hard way (update)

Nadya Suleman (a/k/a ‘Octomom’) shares the lessons she’s learned the hard way—with PETA helping her out, too.

Nadya Suleman is the infamous single California woman at the center of an ethical firestorm because of her use of assisted reproductive technologies to implant IVF embryos and carry 8 babies, all at once, to term.  In addition to this, she had 6 children at home, all brought into being with the help of IVF.  Her actions and the actions of the physician who implanted 6 embryos (2 split to become twins) prompted an outcry in the medical ethics community, prompting questions such as “How far does reproductive autonomy go?” and “How many children is too many?”

As I had noted in a blog entry here previously, there are multiple ethical considerations at play when an IVF specialist is approached by any woman and a ‘burden vs benefit’ analysis is employed. IEET Fellow George Dvorsky blogged: “By implanting 8 embryos in a mother predisposed to multiple births, they put her health at risk and they significantly increased the likelihood of her introducing a multiplicity of babies into a family that was already over-extended.” Bioethicist Art Caplan noted that “Society is getting stuck with the bill when she made this choice to be an infertility patient; It is more than her interests. It affects her kids and it affects the rest of us.”  The media attention to this case prompted medical ethicists to question the adequacy of ART (Assisted Reproductive Technologies) oversight: the American Society for Reproductive Medicine convened a conference to start a dialogue on this issue and a summary of discussion can be seen here and here. Fortunately, more than a year out, this case has turned out to be a real outlier and does not represent a trend in the ART industry.

And since then, Nadya Suleman has expressed deep regret at her decision—the costs have been extreme; the home in which she is living is being threatened with foreclosure and the impact of her decision is now coming down to bear heavily.  And as ticked off as everyone was at her and her IVF physician, no one I know thinks that her children should suffer more for her bad decision.  And, fortunately, most Americans (I would like to believe, anyway) have the heart to forgive someone who admits they have screwed up—and we love to hear stories about redemption.

And the redemption here is that the Associated Press has reported that Nadya Suleman (a/k/a ‘Octomom’) doesn’t want your pet to suffer the same fate:  PETA has negotiated a deal with the Ms. Suleman that allows them to post a PETA sign in her front yard trumping the value of spaying or neutering pets. The deal was in exchange for a one-time payment and a month’s worth of veggie burgers and veggie hot dogs for her and her children. The full story can be seen here.
Sounds like a win-win situation to me.

[Cross posted over at the IEET blog]

Women and Posthumanity: The future looks large and sexy

The body has a lot of change to go through on the path to post-humanity. There is a lot of room for improvement and enhancement. Even with all of these cool improvements and enhancements though, my cynical side emerges. While these would be great, are we giving ourselves too much credit that the choices we will make on the route to post-humanity will be practical? Isn’t society a little more vain that that? Seriously? The desire for youth and beauty is by no means a new phenomenon. However, I was caught off guard, just a bit when I was forwarded a video of an interview with Tom Ford, the fashion designer and director of the filmA Single Man.  In the video  Tom talks about women being posthuman and makes some good points in the interview all of which tied in to a paper I wrote on cosmetic surgery awhile back.

He mentions that breasts today do not bear any resemblance to what actual breasts look like. He is right, they try to look natural, but the key word is “try”. Several points that his statement make me think of is, if they are unnatural looking why do we want them to look natural? As a woman who has a genetic predisposition on the higher end of the size curve, I do not understand. The unnatural version of natural looks nothing like my own natural ones, even if we are the same cup size. I have friends who fall in to the same category that I do and talked to them about it and they agree. There is a level of insecurity, but it is not insecurity about size, but about gravity. The posthuman breasts go against the body’s natural inclination to succumb to gravitational pull, if you will. My friends and I however cannot pay to fight gravity; we are left to lesser forms of posthuman enhancements such as the push-up bra. This leads to my second point about Tom’s statement: actual breasts. Is the desirable path one where breasts do not bear any resemblance to natural breasts? Form over function. Breasts work, but do we still need them to work in the same way?

We have formula now, that while it can in no way match breast milk, it does work and many women use it. It is an alternative. Before you send me any hate comments, I breastfed all three of my children, not for a year, but I did. I did eventually switch over to formula. Regardless, if we want surreally attractive breasts, does the functionality need to remain the same or will sex and sexual appeal transition to be the exclusive function.

As adults, we can talk and think about these types of questions and issues, but what about the young girls. Tom Ford makes another point in the video that girls are seeing the adults with their unnatural breasts and think that they need to get their breasts done. He goes on to mention that we have lost touch with what a real breast actually looks like. Again, as adults that is one thing, as a young girl it’s another. In the adoption of the posthuman form are we taking critical examination of what images and ideas we are passing on to the next generation. Further examination though should include the messages conveyed and the impact of these messages on young girls. When thinking about the posthuman woman, the girls of today, how will their lives change by the choices made today. They could very possibly choose to go against the grain of the constructions of beautiful breasts and choose the au natural route. Insecurity about breast size is a facet of growing up that girls deal with. Plastic surgery enables them to address these insecurities, but what do they gain and what does it solve? Large unnatural breasts are not something a mother can pass on to her daughters naturally, it will require, at this point in time, a monetary investment of perpetuation within culture.

Tom points out that we are becoming our own art by manipulating our bodies and creating them the way we want them to look. He also says that it desexualizes, comparing these beautiful bodies to cars. Since they are so glossy, polished and an idealized form of perfection, they are too scary and not human. I would love to hear the answers to the questions he poses about after these surgeries of breast enhancement does it help ones sex life? Or is it intimidating? A body in its artistic form is admirable at a distance without touching. Not like a ball of clay where you want to get your hands dirty and really play with it intensely

Last night, as I was thinking about what I was going to say in the piece I turned on VH1, yes, I think it is a valuable source for pop culture insight. It did not fail me. The show that I turned on was “VH1News Presents: Plastic Surgery Obsession”. It fit in perfectly with what I was thinking and wanted to say, without the reference to post-humanism. The show is about the rise in popularity of plastic surgery, in and now out of Hollywood. The show supports both the new ideals of women’s bodies and that the younger generation is picking up these ideals. The fact that VH1 aired the show, despite a voyeuristic appeal that shows like this have, says something about what we want to see on TV. Finally, at the end of the episode the show touched on males and cosmetic surgery. Tom Ford did not talk about the men being posthuman in his interview, or at least the clip I heard, but VH1 talked about how tricky it was for men to undergo plastic surgery and come out of it looking “natural”. Does this mean that with women getting around 98% of the plastic surgeries they are more willing to transition to a posthuman form or is it just easier for them? What does this mean and how does this reflect on men? Are men going to, can they follow the same path as women? These are interesting questions to think about in addition to the critical examinations of the decisions of women. I look forward to hearing and thoughts.

[Cross-posted at my blog, The Yellow Canary]

A Live Webcast of Why So Few? Women in Science, Technology, Engineering, and Mathematics

In an era in which women are increasingly represented in medicine, law, and business, why do they continue to lag behind men in science, technology, engineering, and mathematics? Why So Few? Women in Science, Technology, Engineering, and Mathematics is a comprehensive report on the controversial issue of the continued underrepresentation of women in these fields.  The report was funded by a grant from the National Science Foundation, the AAUW Letitia Corum Memorial Fund, the AAUW Mooneen Lecce Giving Circle, and the AAUW Eleanor Roosevelt Fund.

Drawing upon a large and diverse body of research, AAUW’s report provides compelling evidence of environmental and social barriers — including unconscious gender bias, stereotypes, and the climate within college and university science and engineering departments — that continue to limit women’s participation and progress.

To register for the live webcast presentation and dialogue on the report on Thursday, March 25, 10–11:30 a.m. (EDT), go to WhySoFewWebcast.eventbrite.com.

Bioethicists Weigh In On the Healthcare Reform Vote (updated)

As the readers of this blog know, both myself and several of our bloggers have posted about universal health care coverage many, many times as an ethical and moral imperative. In the last year, my hopes (along with many other bioethicists, I'm sure ) of attaining universal coverage have gone up, down and sideways, like a roller-coaster ride, exhilarating and frightening, with emotions ranging from inspiration to resignation.   Now that the US House of Representative has finally passed a health reform bill, I've requested several bioethicists (and friends of the WBP) to share their thoughts on the ethical implications of the passage of this bill:

Art Caplan of UPenn:  "The passage of this bill, flaws and all, represents the elimination of the single greatest failure in American health care -- a lack of universal insurance coverage.  With this legislation in place America can finally say after decades of failure that it has honored its responsibility to create equal opportunity for every citizen."

Tom Murray, President and CEO of the Hastings Center:

 "I liked Nancy Pelosi’s comment that being female will no longer be considered a preexisting condition.

As I tried to say in my essay in the Connecting American Values to Health Reform collection, and reiterated in my Perspective in the New England Journal of Medicine, any serious and responsible health reform had to include universal participation along with means for insuring that we could be good stewards of our finite health care resources.

The “universal participation” piece was not fully accomplished, but very significant progress was made. Already today, however, news reports say that it will be under attack in several states. We will have to see whether it survives.

Perhaps the least appreciated aspect of the legislation is the set of strategies to make stewardship a reality (most commentators lump it under “cost containment”). Ezra Klein offers a very useful, brief summary here." 



Ruth Faden, Executive Director of Johns Hopkins Berman Institute of Bioethics and Philip Franklin Wagley Professor in Biomedical Ethics  says:  "This historic legislation for the first time enshrines a national commitment to guarantee that all of us in this country have meaningful access to appropriate medical care.  As a consequence, our society is now more just.  Our people have a greater prospect of securing for themselves and their families not only more health, but also more of everything that is essential to human well-being, including personal security, respect and self determination."

Hilde Lindemann, Professor of Philosophy and Immediate Past President of the ASBH says: 

"Can one be happy and angry at the same time? The passage of the health care reform package is cause for rejoicing: it helps the poor and dispossessed—a disproportionate number of whom are women and children--gain access to health care. But it was achieved at the cost of both parties’ affirming in very loud tones that if a woman is pregnant unwillingly, she has recourse to abortion only if she can pay for it privately. That so much of the rhetoric surrounding reform was given over to underscoring what has been the case since the Hyde Amendment was passed many years ago, leaves me furiously frustrated."

I am waiting for several other bioethicists to respond to my inquiries, and will post them upon receipt.

As for my own feelings and thoughts, I think Nancy Giles of CBS Sunday Morning said it best:

"So I'm a progressive, and I don't consider this bill, or Dennis Kucinich (D-Ohio), or anyone who supports this legislation to be "selling out" because it doesn't go far enough. The bottom line is 30 million more people will get health care coverage, and that will save lives now. Voting "yes" gets a foot in the door.

Change takes serious effort, but progress happens. The fight for women's rights didn't end when we got the right to vote in 1920; the Lily Ledbetter Fair Pay Act signed just last year was another move toward true gender equality. Civil rights didn't end with the Emancipation Proclamation or the Voting Rights Act of 1964.

HR 4872 is a crucial first step, and can be amended and improved, but doing nothing is not an option. Health care should be a basic human right. And no one should be uninsured, or underinsured, or go broke paying their medical bills in the richest country in the world."  

Amen to that. 

[Cross-posted on IEET's blog]

Love’s Labour Lost: An act of desperation leads to a bad law

There is a saying in the law that “hard cases make bad law”.  This tragic story is one of those hard cases:  Last year in June, a 17 year old girl, seven months pregnant, was told by her boyfriend, the baby’s father, that he would leave her if she didn’t get rid of the unborn child.  So, the girl gives 21 year old Aaron Harrison $150 to beat her up and induce a miscarriage; it didn’t work – the baby survived, was born in August and, fortunately, adopted. The girl pled no contest to a second-degree felony count of criminal solicitation to commit murder, but the charges were later dropped as a judge ruled that under state law, she could not be held criminally liable.  Harrison is serving a sentence for up to 5 years for the “attempted killing of an unborn child.”

Utah’s legislative response:  Pass a bill that charges pregnant women and girls with murder for having miscarriages caused by "intentional or knowing" acts; so that if this happens again, the 17 year mother could face a prison sentence of 15 years to life. (The Text of the Bill can be accessed here.)

But no one is addressing the underlying problem  -- Sure, there is plenty of blame to go around – the pregnant minor, the baby’s father, the guy who agreed to beat her up – But there also lots of questions that need to be asked, such as “How could this have been prevented?”   Did the 17 year old or her boyfriend have sex education?  Did either of them have access to birth control?  Was the 17 year old aware that she had the right to a legal abortion?  Did her parents or the boy’s parents discuss alternatives with her?  Did ANYONE in the community discuss her options or offer her support? – Or did they figure that every seventeen year old was as mature as Ellen Page’s character in Juno and everything would be hunky dory? (They obviously haven’t watched Revolutionary Road)   As Lynn M. Paltrow, the executive director of National Advocates for Pregnant Women, commented, how this happened is being obscured because of the sole focus on the baby; she asks “Why would a young woman get to a point of such desperation that she would invite violence against herself?”

According to the Guttmacher Institute, which advocates for sexual and reproductive health in the United States, 93 percent of all Utah counties have no abortion provider. And I would venture to guess that sex education and access to birth control is fairly limited where this happened. (Somebody, please correct me if I’m wrong)

Planned Parenthood Melissa Bird is concerned that the language of “intentional or knowing” is still problematic, leaving suspicion open to any miscarriage: “What happens to women who are in abusive relationships?" she asks. "What happens if a woman threatens to leave the abuser, falls down the stairs and loses the baby? What if the abuser beats the woman and causes a miscarriage? Could he turn her in? Who would the prosecutor believe? What happens if a drug addict who’s trying to get clean loses her baby? Will she be brought up on murder charges?” (full text accessible here)

If there is anything that approaches a consensus in the US on this topic, it is that is prevention of unwanted pregnancy is much better than abortion.  This law doesn’t consider that OR address the underlying problem – it doesn’t help women have control over their reproductive systems or help the unborn; it penalizes the mother for being desperate.

[Cross-posted on IEET’s blog]

First report on WA Death with Dignity law

The Washington Department of Health last week released its report on the first year's experience with the state's new Death with Dignity law. Of the 63 people dispensed lethal medication between March and December 2009, 36 died after ingesting it. Another 7 died of other causes.

Some who opposed the law expressed concern that women may be disproportional users -- not necessarily out of their own deeply felt desire to die, but out of a sense of not wanting to burden their loved ones with their care. The stats reported by the DOH don't appear to bear this out: only 45% of the people who received medication under the law and died (either from the medication or otherwise) were women.

Local media have run a number of human-interest stories about folks' experience with the law, mainly in the vein of applauding its success or reporting the difficulties some people experienced in trying to use the law.

More information about Washington State's law is available here.

Weighing the ethics of Parental rights as modified by multiparent conception......and its further implications

After reading this Article: a few times I want to address the ideology behind "Intent to procreate".
This concept in and of itself if used with any regularity could put a whole spin on a number of legal and ethical issues. 

• If a man and a woman have sex and the mother wants a child and intends to procreate and the man does not, does that limit his rights? Does it alleviate his obligation in paternity and support? The questions go to either side of the gender divide.
• Does intent of creation really have more bearing than facilitation of the child going from embryo to fully developed human?

Lets take a different angle:

• If parent A planned a child out of the conception, and parent B did not does that give parent A an exclusive or dominant edge if parents disagree about the medical treatment for a child?
  
• What if neither person planned the child but a third party intervened in such a way as to try to make a child a possibility between those 2 people. Does that give the 3rd party a right?

This also opens the option of basically co-opting source genetic code due to an intent to conceive on the part of a genetic engineer.
If we base things on intent at the time of conception we may be looking at a far more slippery slope than we ever intended.

Bioethics and the Olympics

Our colleague Elizabeth Reis asks: Is intersex a disorder or a competitive advantage? The International Olympic Committee (IOC) is implicitly considering this question as they explicitly grapple with how to handle athletes who have an intersex condition, a discrepancy between genitals, internal sex anatomy (ovaries or testes), hormones, and chromosomes. Intersex bodies have always aroused suspicion on and off the playing field. Now they are under scrutiny again as doctors and sports officials debate whether some naturally occurring factors, like an unusually high level of testosterone, would give certain female athletes an unfair edge over other women in sporting events. You can read more about this issue here.

Elizabeth Reis is the author of Bodies in Doubt: An American History of Intersex (Johns Hopkins University Press, 2009). She is associate professor of women’s and gender studies and history at the University of Oregon in Eugene.

DIY Synthetic Biology - More Than Building a Better Tomato

A few years in his book, A Many-Colored Glass, Freeman Dyson envisioned that the domestication of biotechnology would result in a new art form, as creative as painting or sculpture and would give rise to an explosion of new diverse creatures, few of which will be masterpieces, but “all will bring joy to their creators and variety to our flora and fauna.”  Now, college biology students are competing to see who can create new, living tools to address the planet's problems (e.g., bacteria that   The comments and reactions to the article range from go-get-'em to we-are-destroying-ourselves-and-the planet to philosophical:

Sample comment 1: 

Genetic engineering by experienced professionals is dangerous enough.

Genetic engineering by students is a spectacularly bad idea.

Sample comment 2:

Mary Shelley's Frankenstein remains a compelling story these many years later  because of its description of what it means to be human, and what happens when we overreach. We can't bury our heads in the sand, we can't put the genie back in the bottle, but perhaps we can ask the question, "Should we do it just because we can do it?"

Sample comment 3:


lots of pluses and minuses here - 
Plus: poor countries can home brew their own genetically engineered crops and not have to rely on multinationals and their morally odious "patenting" of genetic  sequences (many of which started as novel genetic strains they freely took from poor countries).

Minus: Al Qaeda can brew its own deadly flu strain. Possibly killing many poor Muslims would not be a problem for Al Qaeda.


Welcome to the age of genetic hacking. Just like computer hacking, except we're the vector, not our computer.

Sample comment 4:  [I suspect a bioethicist wrote this one]


Any technology can be used to accomplish useful things, or abused to accomplish evil things. The fault lies with personal ethics, not the technology itself. Our students are carefully versed in the implications of biotechnology as well as the applications and limitations.  It is important to expose students to ethical considerations in the use of technology. Our students are far more informed on these issues than the general public.

Regardless of your position on whether or DIY genetic engineering kits are a good idea, this article does provide evidence that the field of bioethics is not dying or irrelevant; if anything, it is now needed more than ever.

HeLa Cells and The Immortal Life of Henrietta Lacks

I had the pleasure of being one of the fact-checkers and proof reviewers on Rebecca Skloot's book, The Immortal Life of Henrietta Lacks, and I'm pleased to see that it is now on the NY Times Bestseller list and that Rebecca is well into her book tour.   Rebecca retells the story of Henrietta Lacks and her family and masterfully weaves it into compelling story, that rivets your attention and illustrates just how far we've come in and how far yet we have to go in human subject experimentation.   Here is a short excerpt to whet your appetite:

[On January 29, 1951, David Lacks sat behind the wheel of his old Buick, watching the rain fall. He was parked under a towering oak tree outside Johns Hopkins Hospital with three of his children—two still in diapers—waiting for their mother, Henrietta. A few minutes earlier she'd jumped out of the car, pulled her jacket over her head, and scurried into the hospital, past the "colored" bathroom, the only one she was allowed to use. In the next building, under an elegant domed copper roof, a ten-and-a-half-foot marble statue of Jesus stood, arms spread wide, holding court over what was once the main entrance of Hopkins. No one in Henrietta's family ever saw a Hopkins doctor without visiting the Jesus statue, laying flowers at his feet, saying a prayer, and rubbing his big toe for good luck. But that day Henrietta didn't stop.

She went straight to the waiting room of the gynecology clinic, a wide-open space, empty but for rows of long, straight-backed benches that looked like church pews.

"I got a knot on my womb," she told the receptionist. "The doctor need to have a look."

For more than a year Henrietta had been telling her closest girlfriends that something didn't feel right. One night after dinner, she sat on her bed with her cousins Margaret and Sadie and told them, "I got a knot inside me."

"A what?" Sadie asked.

"A knot," she said. "It hurt somethin' awful—when that man want to get with me, Sweet Jesus aren't them but some pains."

When sex first started hurting, she thought it had something to do with baby Deborah, who she'd just given birth to a few weeks earlier, or the bad blood David sometimes brought home after nights with other women—the kind doctors treated with shots of penicillin and heavy metals.

About a week after telling her cousins she thought something was wrong, at the age of 29, Henrietta turned up pregnant with Joe, her fifth child. Sadie and Margaret told Henrietta that the pain probably had something to do with a baby after all. But Henrietta still said no.

"It was there before the baby," she told them. "It's somethin' else."

They all stopped talking about the knot, and no one told Henrietta's husband anything about it. Then, four and a half months after baby Joseph was born, Henrietta went to the bathroom and found blood spotting her underwear when it wasn't her time of the month.

She filled her bathtub, lowered herself into the warm water, and slowly spread her legs. With the door closed to her children, husband, and cousins, Henrietta slid a finger inside herself and rubbed it across her cervix until she found what she somehow knew she'd find: a hard lump, deep inside, as though someone had lodged a marble the size of her pinkie tip just to the left of the opening to her womb.

Henrietta climbed out of the bathtub, dried herself off, and dressed. Then she told her husband, "You better take me to the doctor. I'm bleeding and it ain't my time."

Her local doctor took one look inside her, saw the lump, and figured it was a sore from syphilis. But the lump tested negative for syphilis, so he told Henrietta she'd better go to the Johns Hopkins gynecology clinic.

The public wards at Hopkins were filled with patients, most of them black and unable to pay their medical bills. David drove Henrietta nearly 20 miles to get there, not because they preferred it, but because it was the only major hospital for miles that treated black patients. This was the era of Jim Crow—when black people showed up at white-only hospitals, the staff was likely to send them away, even if it meant they might die in the parking lot.

When the nurse called Henrietta from the waiting room, she led her through a single door to a colored-only exam room—one in a long row of rooms divided by clear glass walls that let nurses see from one to the next. Henrietta undressed, wrapped herself in a starched white hospital gown, and lay down on a wooden exam table, waiting for Howard Jones, the gynecologist on duty. When Jones walked into the room, Henrietta told him about the lump. Before examining her, he flipped through her chart:

Breathing difficult since childhood due to recurrent throat infections and deviated septum in patient's nose. Physician recommended surgical repair. Patient declined. Patient had one toothache for nearly five years. Only anxiety is oldest daughter who is epileptic and can't talk. Happy household. Well nourished, cooperative. Unexplained vaginal bleeding and blood in urine during last two pregnancies; physician recommended sickle cell test. Patient declined. Been with husband since age 14 and has no liking for sexual intercourse. Patient has asymptomatic neurosyphilis but canceled syphilis treatments, said she felt fine. Two months prior to current visit, after delivery of fifth child, patient had significant blood in urine. Tests showed areas of increased cellular activity in the cervix. Physician recommended diagnostics and referred to specialist for ruling out infection or cancer. Patient canceled appointment.]


To read more excerpt, click here.  You can also hear Terry Gross interview Rebecca about her book here on NPR.

 
From issues in medical paternalism to the dark history of experimentation on African Americans and legal and ethical battles over whether or not we control the stuff we are made of (as in the Moore vs California Bd of Regents case, which is a thorn in the side of most bioethicists I know), this book rocks! 
I'm recommending it for the WBP Summer Book Club!

Samantha Burton's Ordeal at Tallahassee Memorial Hospital

Well, Tallahassee Memorial Hospital is at it again – that is, forcing a pregnant woman to undergo medical treatment against her will.

You might remember the case of Pemberton v. Tallahassee Regional Medical Center (now Tallahassee Memorial Hospital), in which Laura Pemberton was forcibly taken from her home in active labor, put in an ambulance, taken to the hospital, and made to undergo a court-ordered cesarean.  Ms. Pemberton’s “crime”? She was trying to have a VBAC at home, attended by a midwife after no physician would attend her at the hospital.  While in labor, she went to the hospital for some IV fluids.  The doctor refused to give her the fluids, and insisted that she get a cesarean. She returned home. The hospital obtained the court order to return her back to the hospital and have a cesarean against her will. That court order was (erroneously) upheld by the federal district court in Pemberton v. Tallahassee Regional Medical Center, 66 F. Supp.2d 1247 (N.D. Fla. 1999).  

This time around, in March 2009, Tallahassee Memorial Hospital saw fit to obtain a court order to force Susan Burton to be indefinitely confined in the hospital and made submit to any and all treatments deemed necessary by her physician, Dr. Jana Bures-Forsthoefel, for the benefit of her fetus.  The doctor was concerned that Ms. Burton, a mother of two children who was suffering pregnancy complications at 25 weeks, was at risk for premature labor, and also smoked during pregnancy. 

Under the court order, Ms. Burton could conceivably have been confined to bed rest and made to undergo ordered medical treatments for 15 weeks, until her due date. Sadly, her baby was delivered stillborn by emergency cesarean 3 days later. 

Ms. Burton’s request to change hospitals and get a second opinion was denied by the Leon County Circuit Court.  She was not represented by a lawyer, and had to argue her own case to the judge by phone from her hospital bed. 

Fortunately, Ms. Burton is now being represented by a lawyer, and has appealed the Circuit court’s order that in essence treated her as a fetal incubator, made to stay in bed and submit to any treatments her doctor saw fit.  In January, oral arguments in the appeal were heard before the Florida First District Court of Appeals. 

 On appeal, Ms. Burton argues, along with the Florida ACLU as amicus curiae, that the lower court wrongly applied the state’s “parens patriae” interest (which allows the state to act in the “best interest” of an already born child) to the fetus. By applying that standard to a fetus instead of a born child, the court completely ignored Ms. Burton’s own state constitutional interests at stake in the case – her critical interests in protecting her bodily integrity and privacy.  

 The state attorney in this case, Willie Meggs, who was also involved in the Pemberton case, shows little concern for the bodily integrity and rights of pregnant women. The actions of the hospital and Dr. Bures-Forsthoefel fly in the face of ethical recommendations made by both ACOG and the AMA, that pregnant women should not be forced to submit to medical treatment to benefit the fetus.  And the court ruling is inconsistent with those of other courts. 

The Burton case is a cautionary story—a woman goes to her doctor with complications in her 25th week pregnancy, only to be told she cannot leave (even with two young children at home), cannot get a second opinion or go to another hospital, and must stay confined there indefinitely, as her doctor orders.  If the decision is allowed to stand, pregnant women risk being “medically kidnapped,” as one blogger put it, if their behavior is not deemed best for the fetus. All pregnant women, at least in the Tallahassee area, should be on notice that they are fair game for over-zealous hospital lawyers and physicians who fail to see pregnant women primarily as persons with constitutional rights, but instead as fetal gestators who can be forced to “behave” as they see fit.

[Our guest blogger this week is Kathy Taylor, JD, PhD, is an Associate and Lecturer at the Center for Bioethics at the University of Pennsylvania School of Medicine.  You can see more about her background here.]

Randi Epstein's "Get Me Out: Making Babies Throughout the Ages"

As I was driving past the Brazilian Embassy a few days back on Massachusetts Ave in DC, I turned on the radio and heard "So tell me about these do-it-yourself forceps". My interest was instantly piqued. It was Fresh Air on NPR, and Terry Gross was interviewing Randi Epstein about her new book called "Get Me Out: Making Babies Through the Ages". Though the interview was only about 15 minutes long, it gave a very exciting example of what the book would provide, a deep look at technology, politics and sociology behind the history of women conceiving and delivering babies, right up until today's discussion of designer babies. Randi's interview was fascinating and I'm looking forward to grabbing the book!

[Editor's note: And read together with our previous post about Why I Love Designer Babies, you get a really  interesting, fun, and thought-provoking read]

Is Evidence Based medicine morphing into Algorithm Based medicine?

We all want health care to be based, as much as possible, on a scientific basis. When we initiate a treatment or make a diagnosis, we need evidence that the diagnostic methods are accurate and that the treatment is efficacious. But when “evidence based” medicine goes through the political process it can turn into “algorithm based” medicine. Let me explain.

Algorithm based medicine uses data from large groups and applies that to the individual. The NICE commission of Great Britain does that with their decisions about how much money they are willing to spend to prolong a patient’s life by six months. The recent new mammogram recommendations put forth by the U.S. Preventive Services Task Force do that for American women. Recommendations of this sort portend thinking that may soon be put into law. This approach places economics and so-called efficiency at a higher rank than autonomy and beneficence.

Going even farther than the U.S. PSTF, both the Pelosi and Reid versions of the Health Care Reform act currently before Congress mandate such algorithm decisions. For example, if you are 75 years old, have type 2 diabetes, had prostate cancer surgery six years ago, and have mild hypertension, you may have enough “points” against you that the algorithm will deny you hip replacement surgery on grounds that it is a bad economic investment. Your neighbor, who does not have type 2 diabetes but in all other ways matches you, might qualify.

This form of algorithm-based medicine is presented to the public as a way of containing costs and increasing efficiency. However, a truly intellectually honest way to present the matter is the following: “The algorithm dictates that it is preferable for a certain percentage of women in their 40’s die of breast cancer in order to make the cost of mammograms for women in their 50’s more affordable.” If presented this way the public would have a clearer picture of choices.

Here is another real life example. My fiancé, Beau Briese, a first year Resident in Emergency Medicine at Stanford, is currently working on a series of research projects that involve the PESI score, or the Pulmonary Embolism Severity Index score – an algorithmic method for determining the risk of mortality for patients who have image proven pulmonary embolisms. The score categorizes patients into five classes of risk for in-patient and 30 day mortality based upon 11 characteristics including gender, age, heart rate, and whether or not the patient has altered mental status. The goal of this score is to help physicians determine who needs to be admitted to the hospital and who can be discharged from the emergency room on the day of diagnosis. While I am glad that Beau is working on an algorithm that will help physicians determine an otherwise potentially subjective decision for hospitalization, it is also a method that if implemented strictly as rule rather than guideline may be detrimental to healthcare in general. For example, the PESI score class II has a 0.5% risk of mortality. That means that 1 out of every 200 patients who are sent home with this score will unnecessarily die at home. On the other hand, 199 out of those 200 people will not risk being needlessly hospitalized, which will save the patient time and worry and the hospital money and resources.

Putting distributive justice above autonomy and individual responsibility seems superficially to improve health care efficiency. However its long-term dangers are grave. Should the emphasis on health care be efficiency and equality? Imagine the following scenario.

Identical twin brothers graduate from the same high school and college in the same field. They live in the same neighborhood. One spends his money on fancy cars, fine wines, expensive restaurants, and trips to Las Vegas. He decides he is healthy and does not buy health insurance, using his resources for fun. His brother, who makes the exact same amount of money, buys a “Cadillac” health insurance policy, puts money aside to tide himself over in the event of disability, and drives modest cars. When they turn 40 they both develop the identical cancer. Should their treatment be the same? Should the prudent brother’s foresight gain him nothing? Should the brother who elected not to buy insurance until after he was diagnosed be allowed to have the same new health insurance as the one who bought it before the diagnosis?

The following are links to a description of the tragedy of the commons and defense of the proposed mammography guidelines and feel free to email me if you would like a pdf of the JEM PESI Score article:

www.econlib.org/library/Enc/TragedyoftheCommons.html

www.usnews.com/health/family-health/cancer/articles/2009/11/19/task-force-member-defends-mammography-guidelines.html

Designer Obstetrics: Cesarean Section on Demand

Should women be able to request a cesarean section to deliver their baby just because they can?

Cesarean Section on demand is defined as a primary or first cesarean section at the request of the mother in the absence of any medical or obstetrical indication. A cesarean section is usually done for maternal or fetal reasons in accordance with accepted medical practice and guidelines set forth by the American College of OB/GYN (ACOG). An electively requested cesarean section in an uncomplicated pregnancy has traditionally been considered inappropriate and not done by most obstetricians. However, in recent years this belief has been challenged and more obstetricians are honoring their patients decisions. ACOG, in their committee opinion No. 394, December 2007, outlines the most recent guidelines when confronted with cesarean delivery on maternal request.

There are risks and benefits for both planned a vaginal birth and for cesarean section. Some mothers requesting cesarean section rather than proceeding with a planned vaginal birth do so because they believe that a vaginal birth will cause damage to the pelvic floor. Later in life this could contribute to urinary/fecal incontinence and pelvic organ prolapse. Others opt for cesarean section because they fear the pain of labor and delivery. While others prefer the convenience of a scheduled delivery. The strongest argument against a cesarean section are problems that can arise in future pregnancies. Subsequent pregnancies following a primary cesarean section have increased rates of placental abnormalities (placenta previa, accreta and increta), uterine rupture, hemorrhage and gravid hysterectomy. Nationwide because of the overall increasing rates of primary cesarean sections and the repeat cesarean sections the rates of these life threatening complications have been on the rise.

Ethically, the question we obstetricians face is "which ethical principle should triumph - patient autonomy or non-maleficence?" Should the patient's right to autonomy be respected, after being advised and explained all the risks, benefits and alternatives, that is after informed consent is obtained? On the other hand should the physician as healer respect the principle of non-maleficence, "first do no harm" and so, refuse to accede to a patient's demand?

[Aycan Turkmen, MD, is an obstetrician/gynecologist and a guest blogger for the Women's Bioethics Blog.]

Avatar: The Future of Bioethics is Now

Avatar, the recently released big budget movie by James Cameron, has taken the entertainment industry by storm. Normally “not to be pleased” film critics cannot find enough complimentary words to print. With a $300 million price tag to produce, Avatar has become an instant “cult hit”. Audiences leave theaters in awe of the computer generated special effects that reportedly have transformed the movie viewing experience to a state of virtual reality. In addition to achieving ultimate moviemaking technology, the story line is a compelling account of a science fiction that may be less fiction than it is real science.

The story of Avatar explores the ability of a human to inhabit the mind and control the body of a lesser being created by science to accomplish tasks considered too dangerous for the human to engage in. The manufactured humanoids are sent to an inhospitable planet where war is being waged for control of the universe. Sound like a better way to wage war? Sound far-fetched? Perhaps science is far more capable of creating this fantastic world than most moviegoers would expect.

The word “avatar” derives from a Hindu word representing the embodiment of the god Vishnu in typically lesser forms of being some of which are god-like and others much less so, including turtles, fish, boars or lions. Vishnu was embodied in countless life forms all created for specific purposes to achieve the intent of the god who engendered them. 

The word came into popular American culture through the language of Internet gaming in which players created virtual selves to live, play and potentially die to live again in the game “Habitat” first created in 1986.  As players created their “online persona” they lived vicariously through their surrogate in playing the game by engaging in virtual activities which hopefully they would never choose to participate in “the real world”. Their avatars could murder, maim, deceive and steal with impunity.

How could this fiction possibly be realized through science? It is much closer to reality than we might wish to admit. The science of transgenics has accomplished amazing feats in the laboratory which movie makers could only wish to recreate for the big screen. Truth in fact is stranger than fiction.

Would you like to manufacture a natural fiber much stronger than steel? How about combining the genetic code of a spider with that of a goat to create goat’s milk with the strength characteristics of a spider’s web? Outlandish, you say! Done. BioSteel® is the product of a Canadian company which comes from its “spidergoat” created by combining the genomes of spiders with those of goats.

Barnyard experimentation is one thing, but human experimentation is something entirely different. Right? Wrong. In Amherst, Massachusetts genetic engineering company Advanced Cell Technology created hybrid embryos resulting from the injection of human cells into cows eggs. South Korean research company Maria Bio-Tech created a “hu-mouse” by injecting human stem cells into mouse embryos The living altered embryos were implanted into to a mouse womb with a litter of healthy “hu-mice” delivered thereafter. And just for the fun of it, Cambridge University researchers created “she-male” hermaphrodite human embryos by implanting male genes into female embryos. These chimeras (part one life form and part another) are scientifically capable of creation in infinite varieties.

Make no mistake about it, as a human born with a bi-cuspid aortic heart valve, I am very interested in creating a pig which would carry my own genetic code so if the time arrives that a valve replacement is medically necessary, I can harvest a perfect body part for the task. But because I can, should I?

More critically, because we might be able to create human-like forms in the lab for the purpose of conducting warfare, scientific experimentation or medical therapy should we?

At present, no federal laws in the US prevent these outcomes. Only human restraint does so (if in fact such experimentation is being restrained rather than simply not reported).

All significant human scientific advances raise ethical concerns. The time has long passed for us to seriously consider and engineer the ethical limits, conditions and consequences of genetic experimentation. Only a multi-disciplinary dialogue will provide the breadth and depth of discourse necessary for this critical conversation. Scientists, ethicists, lawyers, physicians, policy makers and the public must be invited into this discourse lest one segment of society hijacks the possibility of a reasoned outcome.

In all the debate and diatribe surrounding health care reform, dialogue concerning bioethics has been noticeably absent. For the sake of humans, avatars, chimera and other life forms capable of being “born” in our laboratories, the time to convene this dialogue is now.

[Larry Bridgesmith is a guest blogger for the Womens Bioethics Blog; you can see more about his background here. ]

Abortions in the military: disempowering women in service

Prior to Roe v. Wade, women in the military were pressured to get abortions so as to preserve them and their physical availability for service, otherwise automatic discharge from service would result. Now, it's nearly impossible for military women to safely get an abortion, in both the physical and political means. Meet Amy: a Marine who had received excellent performance evaluations and was on track to promotion but now fears for her career's integrity because of her pregnancy resulting from rape while in service in Iraq. A ban set in place in 1979 prevented any federal monies, which includes military medical health plans, from funding abortions. The inability for military physicians to provide abortions forces women who become pregnant in the military to take drastic measures to find an abortion; including local off-base hospitals in the region of service where language/cultural/technical differences in medical practices can jeopardize safety and comfort to the patient, horrifyingly unsafe do-it-yourself methods with any variety of herbal abortifacients or coathanger devices, or taking a stigmatized military leave to travel thousands of miles back home to (hopefully) receive a safe abortion with the proper care in a timely fashion. To make matters worse, the punishment for violating Article 92 of the Uniform Code of Military Justice, ie. having sex in a war zone, can land you a hefty fine and suspended rank reduction. This offense is clearly unjust because a female can't exactly hide pregnancy, whereas the impregnating male can remain elusive under this law, pending genetic paternal tests. Regardless, Amy was afraid to tell her officers, peers and medical caretakers of her pregnancy because she feared being viewed as a "weak female" and most certainly did not want to interrupt her active service in Iraq. After a mess of revelations to her ranking officers, Amy was sent home, mostly on the deabilitating diagnoses of PSTD, depression and anxiety, and oh...to get an abortion after having unsuccessfully attempting to terminate it herself via a few horrifying methods.

Many leaders in government like Rep. Susan Davis (D-CA), Vicki Saporta, President of the National Abortion Federation, and Lieutenant General Claudia J. Kennedy, are pushing hard for abortion rights in the military, but even amongst their battles with abortion legislation, military abortion rights see a small piece of the pie. The barriers facing women in the military to receive abortion services loom at every turn when looking for help. The most straightforward way to put it, is that “servicewomen do not receive the protection of the Constitution they defend" and this is a form of exploitation that is morally unacceptable. 

"Health, Sex, and Women's Rights in Contemporary Asia" - upcoming lecture series in Seattle

Starting this Saturday, the Gardner Center for Asian Arts and Ideas will be hosting a lecture series titled "Health, Sex, and Women's Rights in Contemporary Asia." All events will be located in Volunteer Park.

January 30 – Women Feed the World: Women’s Land Rights in Asia
Speakers: Renee Giovarelli, Rural Development Institute, and Haven Ley, Bill & Melinda Gates Foundation

February 6 – Asia: The Frontier in the Battle for Health Equity in the World
Speakers: Tachi Yamada, President of Global Health, Bill & Melinda Gates Foundation, and Chris Elias, President and CEO of PATH

February 13 – In Silence: Maternal Mortality in India
Speakers: Susan Meiselas, Magnum photographer; Sylvia Wolf, Director, Henry Art Gallery, University of Washington; and France Donnay, Bill & Melinda Gates Foundation

February 20 – Feminization of Labor in Southeast Asia: How Girls Feed Families, Stay Healthy and Cope with Exploitation
Speakers: Therese Caouette, Seattle University expert on migration and trafficking issues in Southeast Asia, and Kate Teela, Bill & Melinda Gates Foundation

This looks like a great series of informative lectures; you can sign up for all or one at a time.

For more information, head to their website.