Monday, September 20, 2010

Back By Popular Demand -- The Content of the WBP Project

We've been getting so many requests for the papers, interviews, and programs we developed that we put the content back online -- you can access it here.



© Women’s Bioethics Project


Friday, June 11, 2010

Women's Bioethics Project Closes

Dear Friends,
We launched the Women’s Bioethics Project six years ago. With your support, we developed innovative programs, policy recommendations and research on ethical issues pertaining to women’s health, reproductive technologies, and neuroethics. We made a difference: our work brought these important issues to new audiences and encouraged women to participate in policy development around bioethics questions. Please take a look at the “Report to the Board” highlighting some of the key activities we accomplished together. I sincerely appreciate the time, talent, and financial resources you have contributed to make our effort a success. Thank you.

We now have an extraordinary opportunity to take our work to the next level. As Craig Venter and his colleagues create "the first self-replicating species we’ve had on the planet whose parent is a computer," and Lee Hood's team completes the first family genome study, we are entering a new and very exciting era in biology and medicine. Simultaneously, bioethical issues are showing up with increasing frequency in film, television and literature.

Million Dollar Baby dealt with euthanasia and the right to die; The Constant Gardener with informed consent and drug trials in developing countries; The Island with human clones for replacement parts; Gattaca with genetic engineering; The Sixth Day with cloning; Minority Report with neuroengineering; and Bicentennial Man with artificial intelligence. Popular television programs such as Law and Order, House, Grey’s Anatomy and CSI Miami have tackled issues from informed consent to genetic testing. In literature, Margaret Atwood showed us the perils of bio-engineering in Oryx & Crake, Kazuo Ishiguro focused on cloning in Never Let Me Go, Michael Crichton dealt with genetics in Next, and Jodi Picoult took on savior siblings in My Sister’s Keeper (now a movie too.) Not since the early days of space exploration have we seen the general public’s interest in science and ethics-related issues so piqued.

Most of the recent works in this vein focus on the perils rather than the promise of biotechnology, and it is these perils that conservatives use to promote their agenda. These aren’t just talking points: conservative bioethics centers have made popular movies and books major vehicles for their message. Yet filmmakers, television producers and authors are not intentionally driving a conservative bioethics agenda; rather, they are merely creating compelling story lines with strong narrative tension. What would happen if more of these story lines incorporated a progressive viewpoint? There’s an enormous opportunity to expose the progressive side of bioethics through popular media if we can help find and cultivate the material.

We need ways to reach people outside of the academic and policy realms. Leveraging the power of popular culture is a compelling strategy that engages the public in a visceral and dramatic way. Many emerging technologies and ideas were unimaginable until recently. Genetic testing, designer babies, radical life extension, and neural imaging, to name just a few, are still in their infancy. And there is a great opportunity for determining how these issues are framed in the public mind. Policy will follow public opinion, so we must ensure progressive values are part of the national conversation.

It is time to take our work to the next level: influencing popular culture. This new focus is an evolution and extension of our original vision. We are in the initial planning stages of this next great adventure. If you are interested in being involved, follow me on Twitter @khinsch or contact me directly.

The Women’s Bioethics Project has been a wonderful experience. We are grateful for the many accomplished people who gave generously of their time and talent; the influential organizations that partnered with us; and the visionary, generous donors who took a chance on a big concept that few have tried. However, addressing the new cultural challenge requires a new organization with a less specific focus than a public policy think-tank. As a result, the Women’s Bioethics Project will close its doors on June 11, 2010.

I look forward to keeping in touch with each of you. Thanks for all you have done to move this critical agenda forward.

Kathryn Hinsch
Founder/Board President
206-200-1101
khinsch (at) mazama.net

[Note from the Editor:  Likewise, the Women's Bioethics Blog willing be shutting down shortly.   I will continue to post periodically over the IEET blog, and plan to continue working on my book. 

I'd like to thank all the bloggers for their efforts over the years, and I thank all of our loyal readers for their support.  I wish you all a fond farewell, but not goodbye -- until we meet again in cyberspace or some other realm.  With great appreciation, Linda MacDonald Glenn]

Sunday, June 06, 2010

Forced Sterilisation in Namibia

The BBC reported this week that three women in Namibia are suing the state for performing a sterilisation without consent. There appears to be some uncertainty about the degree of force because of difficulties during consultation. A legal representative remarked that procedures are not always discussed clearly and the eleven indigenous languages create, at times, a language barrier. The women have been protesting and carrying placards which state “My body, my womb, my right”. 

Now, for the next crucial point: these women were sterilised following a positive diagnosis of HIV. Coming from a society (UK) that promotes individual autonomy and truth-telling to patients to its greatest extent, it is easy to jump on the bandwagon and start pointing the finger at the accused doctors for their wrong-doing. Forced sterilisation has been reported in other countries, particularly post-Communist countries such as Albania and the Czech Republic. It has been difficult to carve out the image of autonomy from a history that denied individuality. But Namibia has a different twist. I can only surmise that the goal for preventing future pregnancies of these women is to halt this method of potential transmission of the HIV virus.

In a country where HIV/ AIDs is the leading cause of death, and the National Demographic Health Survey (2006) estimated close to 17% of children under the age of 18 have been orphaned by at least one parent, the medical community – as well as society – must be close to despair. Does this make a doctor’s action to perform a sterilization on a HIV+ woman who may have not consented with capacity and competence, or not consented at all, any easier to understand?

Is it a utilitarian ethic to prevent the potential future suffering – medical and social – of a family – and is a doctor the right person to instigate such practices? First of all, HIV is a manageable chronic condition in Western countries, but with the lack of accessibility and availability of medication along with other factors specific to a country, HIV is a death-sentence.

Is managing birth a way of managing disease? Truth and trust often go hand-in-hand. What are the implications for Namibian women and the countries medical system? It appears that the sterilization of these three women, forced or not forced, is raising questions about how must medicine respond to dire threats to human life, and moreover, cutting the cord of trust between a doctor and a patient terminates a part of the system of society.

The pain of the fetus

In France, the new studies demonstrate that the fetus can suffer. The question is to find the treatment to fight this pain.
On June 5th in Paris, Palais du Luxembourg, the PremUp foundation organizes a colloquium to discuss it. This Fondation works on prematurity, average prematurity and extreme prematurity.
The premature births increased by 15 % these last ten years in France. The fetus perceives the pain from the second quarter of the pregnancy, it is important to treat her.

What is the best means to avoid the suffering of the foetus?
Besides the contact with the mother, the environment of the fetus is essential. Some medical staffs can give painkillers for 20 % of case. But all hospitals cannot afford it. Unfortunately, the French hospitals miss means.

This colloquium will be the opportunity to speak about solutions the most adapted to treat the pain of fetus.

The PremUp Foundation Website, english pages: http://www.premup.org/en/

Saturday, June 05, 2010

New Fatwa Calls on Men to Drink Women's Breast-Milk

Ramond Ibrahim is associate of the Middle Eat Forum and the author of the article "New Fatwa Calls on Men to Drink Women's Breast-Milk". (Ibrhaim, June 2010).
The article he wrote address the issues in regards to Islam's prophet Muhammad recommends rida' al'kabir which is an arabic word that means adult-breastfeeding is making headlines again, three years to the date this article was written. Three years ago May 22, 2007, an Egyptian scholar, Dr. Izzat Attiyah issued a fatwa calling upon women to breastfeed their male colleagues. The reason the Egyptian scholar recommended adult breastfeeding was to get around the strict religious ban on mixing between unrelated men and women.
Sheikh-al-Abaican backs up Dr. Izzat's position that the man must be breastfed by modernising by not drinking directly from the source. The reason the man should take the men will become a relative of the family and will permit him to contact with women without breaking Islam's rules about mixing with the opposite sex.
The questions is is where do all these "adult breastfeeding" ideas originate? (Ibrahim, 2010). According do to the Muhammad canoncial hadith explains to a woman what do about a non-relative boy that was living with her and her spouse when he enters to manhood. The recommendation from the hadith to the woman in regards to the non-relative boy is stilling living with them into manhood should be adult breast fed to prevent the huband not to be upset for him viewing his unveiled wife. According to the hadith the husband was not upset to the act of breastfeeding for this non-relative man became a kinsman. Muhammad's favorite wife Aisha frequently relied on this practice in meeting with non-related males.
The importance of the breastfeeding business has to do with quality and the intrusive nature of Sharia law. Muslim cannot escape adult breastfeeding simply because it contained in Islam's most canoncal hadith. To reject this hadith is to reject the methodology of Sharia law.
The real problem is in the year of 2010 if Muslims still feel compelled to be true to "adult breastfeeding," simply because 7th centruy Muhammad said so will wholeheartedly embark their prophet's thoroughly documented and unequivocal words that concern the infidel...(Ibrahim, 2010). The issue about adult breastfeeding is embarrassing for Muslims and places their women in a difficult position and this topic is on the top ten bizarre fatwas. The question is why is adult breastfeeding a relevant issue among Muslims? Muslims have to come to grips with adult breastfeeding because Muhammad said so.
Muhammad warned Muslims stating, "Because you have forsaken jihad, taking hold of cows' tails and dealing in merchandise, Allah has adorned you with shame and you will never be able to shake it off yourselves until you repent to Allah and return to your original positions [as jihadists on the offensive]," The Al Qaeda Reader, p.162 (Ibrahim, 2010).
In closing, the mentality of Muslims in regards to adult breastfeeding due to the advice of Muhamad is sold on the prophet's constant incitements for war and conquest... (Ibrahim, 2010). "Living n an era where the Muslim world is significantly weaker vis'a'vis the infidel world, and so currently incapable of living up to such bellicose commandment, one may overlook this fact" (Ibrahim, 2010). However the intentions are clearly there and interesting that in the 21st century, Muslims are debating over the absurdity of "adult breastfeeding" (Ibrahim, 2010).

Saturday, May 29, 2010

Legal Voice Receives Bioethics Grant Award

Over the last two years, the Women’s Bioethics Project has closely collaborated with Legal Voice on a number of bioethics-related projects including hosting a bioethics panel on commercial surrogacy, developing a board presentation on reproductive technologies, and drafting provisions of the 2010 Washington State commercial surrogacy legislation to ensure reproductive justice for all. Today, the Women's Bioethics Project and the Tides Center are awarding Legal Voice an unrestricted grant in the amount of $3,000 to support their legal and policy work around the bioethical issues of commercial surrogacy, reproductive technologies and reproductive justice. Congratulations to Legal Voice Executive Director Lisa M. Stone and lead attorney Sara L. Ainsworth for your leadership on these critical issues.

Saturday, May 22, 2010

GeneticsWatch

Creating Life and Curing Blindness

May 21, 2010

Tags: Venter, DNA, creating life, genome, American Society of Gene and Cell Therapy, gene therapy, blindness

I’ve been at the American Society of Gene and Cell Therapy annual meeting this week, garnering tales for my book, tentatively entitled “The Forever Fix.” It is largely the story of 9-year-old Corey Haas, who was on his way to certain blindness when gene therapy performed at the University of Pennsylvania in September 2008

WBP Awards Grant to IJFAB

The Women’s Bioethics Project (WBP) today announced it has awarded a $4,000 grant to the International Journal of Feminist Approaches to Bioethics. The grant award recognizes the outstanding quality of the content in IJFAB, as well as the importance of its mission to bioethics, social justice and health policy in a global context. The funding will be used to underwrite activities that promote IJFAB and serve the aim of increasing and extending its readership beyond academia and bioethics. Part of the grant will underwrite a reception promoting IJFAB at the meetings of the 10th World Congress of Bioethics in Singapore, July, 2010. Congratulations to IJFAB editor Mary C. Rawlinson and her entire team.

Monday, May 17, 2010

DTC genetic testing: Caveat Emptor


I met Cynthia in a van from the airport, headed to the annual meeting of Family Tree DNA (familytreedna.com), where I was to speak about genetic testing. A beautiful blonde who looked decades younger than her 60 years, she’d led a painful life, with type 1 diabetes since childhood, just like her father, brother, and grandfather. The family, so they thought, was 100% European, mostly Polish.

My talk did not go over well. Genetic testing companies and their customers do not like to hear that a geneticist thinks their tests should be regulated, for reasons of both privacy and accuracy.

Cynthia, intrigued despite my warnings, sent off a spit sample to 23andme (23andme.com), to learn about her ancestry. She got that, and more – health information, including a “lower than average” risk of developing diabetes. deCODE Genetics (http://www.decodeme.com/) gave her the same answer. Ditto her brother.

But her brother’s Y chromosome held an explanation. About 1200 years ago, a Korean man and at least two Chinese men dropped a bit of DNA into the family. So when Cynthia went back to 23andme and recalculated, entering “Asian” instead of “European,” her diabetes risk shot up to 90%.

So it looks like ancestry testing helped get this family on the right track. But another way to look at it is that the health-related tests are simply not precise enough.

This past week “direct-to-consumer” genetic testing took a hit, and it’s about time. First the Walgreen’s near-fiasco of off-the-shelf direct-to-consumer genetic tests, then a white paper from the American Society of Human Genetics calling for oversight of ancestry testing.    To top that off, I got a call from a writer for a popular psychology magazine asking me for a “sound bite.” A sound bite? Genetic testing isn’t quite that simple.

Genetic tests for well-studied mutations, delivered by a genetic counselor or physician, in person, are fine. But the genetic “associations” gleaned from population data, although useful in research, often cannot reveal much of anything about an individual – such as Cynthia.

Caveat emptor. 

[cross-posted from Ricki Lewis' blog, GeneticsWatch.]

Thursday, May 06, 2010

A Bioethical Perspective on Oklahoma’s New Abortion Law


The percentage of college educated Americans who support legal abortion seems to have reached a new low among women under thirty and among the population as a whole,  so it should be no surprise that states are passing laws to restrict safe abortions. Before performing any abortion Oklahoma’s new 2010 law requires that the doctor do an ultrasound and describe to the woman the dimensions and gestational age of the embryo, cardiac activity if any, and appearance of external and internal structures.  A vaginal transducer must be used when doing so will display the embryo more clearly than an abdominal transducer.  Oklahoma’s law thus requires doctors to perform an ultrasound that is not medically indicated and likely to be invasive. In this era of skyrocketing medical costs and overutilization of services the new law mandates more of the same while leaving the burden of payment to the women themselves.

U.S. law requires that informed consent be obtained for treatments and diagnostic tests. This means that accurate and relevant information must be disclosed to patients. If current standards of disclosure and informed consent apply then the description of the fetus must include evidence about embryology including clinical and scientific uncertainty about when consciousness, thoughts, sensations, and life begin. This is more than some of the other commentators who are in favor of the law are advocating. Providing abortion without truthful disclosure and informed consent violates existing laws, threatens the doctor-patient relationship, and jeopardizes medical professionalism.  Mandating ultrasound, especially with out disclosing all the information -- especially where the law protects the doctor against deliberate failure to disclose --  means ignoring the need to obtain informed consent. One wonders how such a poorly crafted law ever reached the legislature. Indeed, as a result of legal challenges to the new law an Oklahoma judge has just granted a slight reprieve by delaying implementation for 45 days. 

[Guest blogging this week is Cheryl Cox Macpherson, Ph.D., Professor and the Chair of Bioethics Center at St George's University School of Medicine (SGU) in Grenada where she enjoys teaching medical and graduate students from many nations and background.]



Tuesday, April 06, 2010

Myriads of Indecency: Ruling Against Patenting Cancer Genes Makes Scientific, Legal and Ethical Sense

The decision of a US federal judge to rule against the patenting of the BRCA-1 and BRCA-2 genes this Monday came as a pleasant surprise after a period of several years when the ability to patent human genome segments within the US legal context has been taken for granted. The ruling - a result of the efforts of the American Civil Liberties Union in conjunction with the Association for Molecular Pathology, individual women and others - was, of course, not welcomed by the commercial company Myriad Genetics, which during the period when it thought it had its patent rights secured has been pestering genetic health service providers in the US and around the world with their absurd claims (by implied threats of massive compensation suits) to world monopoly on predictive genetic testing for breast and ovarian cancer, alternatively the cashing in of handsome licensing fees.

Just a quick browsing of the Myriad Genetics website tells you that this company embodies just about everything bioethics researchers have been warning for in connection to the commercialisation of genetic testing since the late 1980's. The University of Utah Research Foundation that held the claimed patent together with Myriad - and that may be assumed to have been cashing in handsomely as a passive partner - should be held equally, if not more, accountable for this attempt to undercut sound business law, decent health care ethical standards, scientific progress and, not least, the health of those people belonging to families burdened by hereditary cancer, whose access to the preventive opportunities offered through genetic testing, and forthcoming advances of medical research, has been undercut. But back to the poverty of Myriad Genetics.

To take just one example of this moral morass, Myriad offers predictive genetic testing for hereditary melanoma - a disease for which the actual risk figure is never given at the Myriad website. Clicking this product, you are immediately told that "Changes in the p16 gene increase cancer risk, making a melanoma diagnosis up to 50 times more likely by age 50", which of course tells you absolutely nothing about what risk of melanoma you actually run before the age of 50 if you have the indicated genetic mutation, but for most people convey the impression that a mutation makes your risk of contracting melanoma before 50 an even game. Clicking further on to the page supposed to give you an in-depth background to hereditary melanoma, you're exposed to the following explanation. Take a minute or so to read it!

Having that horrible mutation must make for a helluva risk, doesn't it? Actually: no! Even considering that the people involved in Myriad are presumably not proper clinical doctors (if they were, AMA would have revoked their licenses by now, right? - I'm being charitable to the US medical profession here), but a bunch of lab rats and business executives, this is as close to actual fraud you can get without actually committing it in the strict legal sense. Remember that nice graph you just saw? Its Y-axis measures not the actual risk of contracting melanoma, but - again! - the change in risk compared to what risk of contracting melanoma you would run were you a random member of the general population. But the impression of the picture is not that - the impression is - once again - that if you carry the mutation you run a 50/50 risk. This message is cleverly conveyed by the sinister manner in which the general population risk figure is illustrated in the graph. That green staple to the right of the tall blue one seems to reach up to the 1 of the Y-axis, right? It's 1% - right? Or something close to 1%? Actually, no! Have a closer look at the graph:



It is <1% - i.e. "less than 1%", i.e. the risk is not given. It could be 0.99%, it could be 0.0000000000000000000001% For all we know based on the information provided, the 50% increased risk may thus equal a 0.0000000000000000000002% risk. Who knows? Obviously not Myriad Genetics - or can they really be consciously hiding highly relevant facts from potential customers??

Just to get some perspective, hereditary melanoma is what geneticists refer to as a multi-factorial disease, i.e. it occurs as a result of the interaction between several genetic mutations and the environment. The p16 test offered by Myriad targets just one among many different genes where a mutation may increase the risk for melanoma. This is actually conveyed by this admirably pedagogic (right!) explanation of what a test result mean. Scroll down and read the message about the "uncertain variant", there you have it! But just above, Myriad boosts about the "comprehensive" (and presumably ridiculously expensive) variant of the test, described thus: "Think of a comprehensive analysis as reading an entire encyclopedia, line by line, to look for a single misspelled word" (italics added by me). Again, as close to fraud as you might dare to wander. The "entire encyclopedia" must be read the entire human genome, including all the other genes that may increase the risk of melanoma - right?? Actually, no! It's the same p16 gene, i.e. it's more or less the same test, just properly done so that all known melanoma predisposing mutations of this particular gene are included. So, suppose you test negative in a "comprehensive" test - this is compatible with you carrying any of the other known genetic mutations of other genes that increase the risk of melanoma - what Myriad so handsomely describe as "no increased cancer risk" when explaining what a test result means. Did anyone mention fraud or deceitful behaviour? - I certainly did not, but it would be interesting indeed to have melanoma or cancer patient organisations trying out that concept in US civil courts (in which case, the University of Utah Research Foundation must, of course, be included in the lawsuit)!

Hopefully, the ruling against patenting actual genes or naturally occurring genetic mutations will undercut the sour-tasting business of Myriad Genetics and other similar companies. For one thing, as a legal precedent, it has the potential of putting a stop to attempts of making ethically well-motivated and responsibly handled predictive genetic testing offered by national health services - for instance for colon-, breast- and ovarian cancer - unnecessary expensive and thus accessible for more people at risk. From a moral point of view, it is thus most welcome. From a legal point of view as well, since what judge Robert Sweet argues in the ruling, "...the claimed isolated DNA is not markedly different from native DNA as it exists in nature, it constitutes unpatentable subject matter" has been obvious to anyone from the outset interested in applying actual patent law, rather than laying the foundation for a new branch of business. If Myriad has a unique procedure to detect DNA, they may patent that, of course, but do they? It remains to be seen, but my guess is that they use the same state of the art science and technology as does any molecular genetic research lab, and that they knew very well that their only chance to make a buck was attempting the patenting of DNA trick.

The only defense offered by Myriad's and the UURF's lawyer was that patenting genes promotes "innovation" and therefore promotes health. False. In fact, the patent claims on BRCA-1 and BRCA-2 has made medical research based on these genes that may lead to deeper understanding of the mechanisms of these forms of cancer, and thus to newer and better treatments, slower and/or more expensive. Patents have the potential of furthering innovation only when all of the basic scientific work has been done (until then, the scientific principle of openness, free sharing, access and use of information is far superior), and in the case of human genetics, identifying genes connected to disease-groups is just the first letter of the first name of that long process. When Myriad says "innovation" they mean business and so does - shame on them - the UURF.

[Cross-posted from Christian Munthe's Philosophical Comment blog.  Christian and research fellow Daniela Cutas have agreed to guest blog in the coming months]

Thursday, April 01, 2010

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

Wednesday, March 31, 2010

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 Redbio├ętica/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

Thursday, March 25, 2010

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]

Wednesday, March 24, 2010

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.

Monday, March 22, 2010

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."

 "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."


"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]

Wednesday, March 10, 2010

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.

Saturday, February 20, 2010

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.

Friday, February 19, 2010

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.

Wednesday, February 17, 2010

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.

Monday, February 15, 2010

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!

Sunday, February 14, 2010

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.]