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.

Donate $50 - Get Progress in Bioethics

Please consider making a tax-deductible donation to the Women’s Bioethics Project so we may distribute as many copies as possible of the soon to be released book "Progress in Bioethics: Science, Policy, and Politics" (MIT Press 2010) to policy makers, science writers and bloggers around the world. This important book will help ensure progressive values of social justice, critical optimism, practical problem solving inform bioethical debate on issues such as stem cell research, genetic modification, therapeutic cloning and end-of-life issues. I wrote chapter 4 on "Bioethics: The New Conservative Crusade." Don’t let the debate be defined by narrowly driven ideological interests.

Help us reach our goal of one hundred books distributed by January 2010. A $50 donation will get a copy of the book into the hands of a key policy maker and we’ll send you a copy too. Find our online donation page here.

Thanks for helping build the kind of world we all want to live in.

Kristof on Cancer in the Kitchen

NY Times Nicholas Kristof makes a point worthy of notice to those in the public health:

"As long as we’re examining our medical system, the public health system should stop ignoring common chemicals linked to fatal diseases."

His Sunday column looks at links between chemicals, such as those in plastic water bottles and food storage containers, and other things in 0ur kitchen --- and breast cancer and other ailments. Read it and leave your thoughts.

WBP mentioned on CNN Health

Kathryn Hinsch, founder of the Women's Bioethics Project, was quoted on CNN Health, regarding ethical issues in cosmetic surgery and patient-doctor relationships:

"Part of the fundamental trust between a patient and doctor is the idea that the doctor has the patient's best interest at heart, and that there is no financial incentive for the doctor to perform any procedure," Hinsch says. "When doctors start adding cosmetic procedures, which they're adding because they're big moneymakers, there's a corruption of that basic trust."

The article goes on to explore how physicians sidestep this ethical quagmire by never directly hawking their fat-blasting, wrinkle-smoothing, and hair-removal services, but that even a stack of brochures in the waiting room, Hinsch insists, sends the message to patients that looking younger is a matter of good health. To read the complete article, click here.

Kudos to Kathryn for the recognition and speaking up on the ethical issues!

An Imperfect Organic Woman’s Perspective on the "Perfect Robot Woman"

When it comes to the perfect, what is it that we want? Is it one woman, or is it several? Recently a link popped up of the Perfect Woman. It turned out that this video was just a viral ad campaign that sent you to the AI Robotics site, which was actually the Phillips site. A very creative campaign that was quite intriguing. However, even though this vision of the perfect woman was a hoax it doesn’t mean that there is not work being done on creating the actual perfect woman. After doing some searching online I found out that Japan’s Kokoru Company is working on creating a perfect robotic woman of the future, ActroidDER. It turns out the perfect woman is merely a work in progress.

The fact that work is being done explore and developing a robotic woman raises a host of ethical and exploratory questions. Questions from why to how to what for? If the perfect robotic can do the housework, converse and satisfy her partner sexually, then what is the basis, in the minds of the creators as to why this is better than a real woman. As women, are we looking to be replaced, and if so why? When I envision the male who is purchasing the robotic woman I wonder if he is a single man who doesn’t have time to locate a spouse or doesn’t want one in general. I also wonder if this male might be married and if he is, what is the reasoning behind his decision to introduce a female robot in to the home.

Aside from these questions it raises issues of beauty and what it is that defines perfection in a robotic woman. It seems threatening to have a purchasable perfect robot woman from the perspective of an imperfect organic woman. I wonder what it would be like to be face-to-face with a robotic woman, since we are so very similar to each other, except my insides are organic and hers are mechanical. As an organic female it is already hard to compete aesthetically with those who have undergone cosmetic procedures to enhance their appearance. The robotic woman can change with the times in her aesthetics and have immediate intelligence upgrades to match the male or female that has purchased her. The robotic female can clean the house all day, not mind ironing and cook an expert French meal, depending on her programming. How, as an organic woman am I going to be able to compete?

I suppose another way to examine the robotic woman in a similar thread would be to say that this woman would be a supplement to me as a wife, not a competitor. She can do all of these things I’ve mentioned to free me up to create, think and innovate in ways that she cannot. In addition, I will be free to have children that I can rely on her to assist the housework for. These areas of life, as far as I am aware for now, are areas where I am not threatened, and I can succeed with the addition of a robotic woman in my home. However, I wonder, if this is the intended purpose of the creation of the robotic woman. If this is the intended purpose, are the perfect aesthetics a necessity in her creation?

It seems that further deep consideration of the ethics, for certain, of the commodification of these robotic women is necessary. However, it seems equally important to explore further the questions on the decision making process of purchasing a woman when they become available, the design, the usage, and a host of other questions that are out there.

Deus Sex Machina

(cross-posted on Sentient Developments)

(Roughly translated from Latin as Sex God in the machine) We all know that technology can improve our lives (sometimes....well, at least when it's working properly), but who'd have thunk that nanotechnology could improve your sex life?

In yet one more 'tool' in the arsenal against dreaded erectile dysfunction, nanotechnology to the rescue! Scientists at Albert Einstein College of Medicine of Yeshiva University have developed a foam with nanoparticles encapsulating nitric oxide for the topical treatment of erectile dysfunction (ED). Why is topical better? Because ED medications such as sildenafil , vardenafil, and tadalafil have limitations -- they can cause systemic side effects such as headache, facial flushing, nasal congestion, upset stomach, and abnormal vision. Might this have implications for Female Arousal Disorder for which there remains little, if any, treatment? One can only hope....perhaps the announcement of the new 'female viagra' for pre-menopausal women can benefit from this new delivery system.

On balance, though, Blue Cross Biomedical has developed a new foam condom for use by women, that looks like a vaginal inhaler. The Blue Cross Foam Condom uses a “formulated condom concentrate” comprised of nano silver particles as well as 'surfactant octyl phenoxy -RH4,tween-20, sapn-60,polyethylene glycol 400, deionized water'. Perhaps a male contraceptive can be advanced utilizing a nano-delivery system?

My humble request to scientists and researchers: Equal time for both sexes, please!

An Open Letter to Future Bioethicists

I couldn't attend the ASBH meeting in DC this year, but apparently, Ezekiel "Zeke" Emanuel gave quite a controversial speech. While I don't have the text of the original speech, my guess is that it will be posted on the ASBH website at some point. But what I do have is Art Caplan's response, from which you can glean certain aspects of Zeke's speech -- I'll be interested to see/hear what kind of reaction this gets:

Facts alone won’t suffice for the field of bioethics

When you get old enough as a practitioner in any field young people seek your advice about what they should do if they want to do what you do. Given that my age seems to be increasing exponentially this has been happening to me with increasing frequency. Undergraduates, high school students, medical students, those pursuing degrees in law and nursing and even those interested in a mid-career change have been asking me what they need to do if they want to pursue a career in bioethics.

I have thought about their question quite a bit. I have come to realize that the answer is not the same for everyone who presents the questions. But, the core of the answer is pretty much the same; pursue masters level training in bioethics, acquire familiarity with key social science methods and tools, learn something about a particular sub-area of the health sciences or life sciences and, seek out every opportunity to fine tune your analytical and rhetorical skills by working with others on projects, research, consulting, or teaching activities. At its heart bioethics is an interdisciplinary activity and knowing how to work with others who do empirical, historical, legal and normative work is a must.

I had thought that advice to be sound until I heard Zeke Emanuel’s plenary address to open the most recent annual meeting of the American Society of Bioethics and the Humanities. Zeke espoused a vision for future bioethicists that I think is narrow, misguided and wrong. Now I say that in the spirit that Zeke himself enjoys—vigorous debate about a matter that both of us consider of the gravest importance.

Zeke Emanuel, a physician with a degree in political science as well, is one of the best and brightest scholars in the field of bioethics. His writings are solid and exemplify how best to integrate empirical inquiry with normative analysis. And the ‘shop’ he has run at the NIH Clinical Center for many years prior to moving into the Office of Budget and Management to work on health reform has done an outstanding job training younger scholars in the ins and outs of bioethical inquiry. These facts are precisely why Zeke’s recent plenary address to the American Society of Bioethics and the Humanities was so disappointing.

Zeke began his speech by joking that he knew much of what he had to say would annoy his audience. He then proceeded to argue that the future of bioethics and of bioethicists depended upon the field moving away from its high public profile in political, media and policy debate. What bioethics needs, he argued, is a beefing up of the shabby empirical foundation it now relies upon for its normative and policy claims.

The only way for bioethics to flourish, to paraphrase Zeke’s key contention, is if bioethicists spend less time in public places, more time mastering quantitative methods and publishing empirically grounded research on topics such as informed consent and surrogate decision-making at the end-of-life in peer-reviewed journals. He also went on to add that he did not find any merit in masters programs or PhDs in bioethics since without a more robust empirical foundation there could be little value in such training.

A young, wanna-be bioethicist, Zeke contended, would be best served seeking training in behavioral economics, psychology, decision theory or perhaps, he grudgingly conceded, sociology. Those armed with these tools could be expected to create the rigorous empirical foundation that bioethics now sorely lacks. Moreover, Zeke predicted, those willing to enter bioethics by heading down his prescribed path can expect generous financial support in the form of a pot of gold provided by a National Institutes of Health poised and eager to provide funding for rigorous research.

Before any prospective bioethicists answer Zeke’s clarion call for rigor by dusting off their applications to departments of economics and the behavioral sciences let me try to point out why Zeke’s vision about what bioethics should be is severely myopic as well as inadequate.

Zeke’s call for bioethics to take a sharp empirical turn has power because it is embedded in his talk of the importance of data and rigor. Both are indeed important for bioethics for a variety of reasons. But, neither will get bioethics where it needs to be if it is to serve health care providers, patients, policy makers or the public.

Bioethics, in my view, has a duty to engage the public with bioethical questions. The topics that bioethics grapples with—how to manage dying, the use of reproductive technologies, what to do to maximize the supply of transplantable organs and tissues, how best to promote clinical and animal research, what information you should expect to receive as a patient about your diagnosis and treatment—are of keen importance and legitimate interest to everyone, rich and poor; young and old around the globe. Part, albeit part, but nonetheless a crucial part of the bioethicists role is to alert, engage and help to illuminate ethical problems and challenges both old and new in the health and life sciences. Note I do not say to solve them nor to be seen as an authoritative source to whom bioethical issues ought be assigned. Rather bioethics’ role is both Socratic and prophetic—challenge, probe, question, warn, chastise, alert, and, as Zeke appreciates, irritate the powers that be when necessary.

In this role of moral diagnostician bioethicists must be responsible and strive for clarity in provoking public attention and debate. However, in this role data is often absent, in dispute or woefully poor. In addition questions loom large and pressing, passions run deep and fear and ignorance are omnipresent companions to doing bioethics with an eye toward helping the public understand issues and options. To engage in the public role that bioethics has and should enthusiastically continue to play in the media, policy, education, legislation and the law more tools are needed then empirical data no matter how rigorous or precise that data and the means used to generate it may be.

One must be able to present a cogent argument, know the areas of consensus that have been established about ethical issues over the history of medical ethics and bioethics, have a familiarity with health law, the infrastructure of policy and a grasp of political, cultural, literary, historical and social dimensions of what makes morality tick in various cultures. In the absence of these skills and knowledge data is completely and utterly blind, even useless. That is why it is precisely this skill set that the aspiring bioethicist should expect a masters program or a PhD program in bioethics to provide in order to gain the analytical and argumentative skills to competently and responsibly carry out the crucial public role bioethics has.

At the end of the day bioethics is a public activity which uses empirical inquiry and information as a tool. Admittedly empirical data are the most important of the tools in the bioethicists toolbox but still they are only one of the types of tools that are used.

Zeke’s vision of bioethics completely confuses the instrument—compiling reliable empirical information relating to normative issues—with the job—informing the public about problems, options and suggesting possible avenues for their resolution.

Zeke’s vision makes a bit more sense if one focuses on the role that bioethics plays within health care for professionals and institutions. There bioethicists often act as consultants or help formulate policy in ethically contentious areas working with providers and administrators and sometimes even payers. But even in this setting, while data is often essential it is never sufficient. Much of what occurs in doing an ethics consultation, for example, has as much to do with knowing how to mediate a dispute as it does a recitation of the facts of a case or having at hand well-supported information about the consequences of various courses of action. In many other situations the ‘facts’ are not known and won’t be known—ever because the human interactions are too complex. Bioethics at the bedside is very much an ethical, social and personal activity and while data has a part to play it has about as much a part to play as it does in our everyday lives and decisions which is to say—sometimes it matters, often it does not.

Before the young bioethicist is told to follow Zeke’s path of empirical positivism consider one other fact. We will not in our lifetime or that of our children ever achieve the kind of empirical certitude about much of anything of the sort that Zeke suggests will help future generations of bioethicists do their work. For every ethical problem for which sufficient data exists to point toward an answer a hundred blossom for which the data don’t. For every ethical problem for which sufficient data have been assembled to make an answer rational, sensible, or even self-evident there are many where behavior, policy and practice do not and cannot be made to conform to that data. Sometimes data alone can point toward an answer. Almost always, however, it is a prior moral argument that points toward the use to which data will, could and ought be put whether that be in medical practice or in medical ethics. And more often then not moral and value arguments simply moot data and that situation cannot be rectified by appeals to more data.

Zeke ended his remarks that day by acknowledging he was not really trying to end the public role or policy dimension of bioethics. Rather he was just trying to reorient the field’s priorities. I would suggest Zeke be heeded but only half-heartedly.

More data is needed in bioethics. More scholars with empirical quantitative skills are needed. That said, if the goal of bioethics is not simply to produce every-increasing amounts of NIH funded empirical data but rather to make a difference for the better in the lives of patients, their health care providers, scientists, and the general public then what we need and will continue to need are bioethicists who know their history, understand the power of cases, stories and analogical reasoning, can mount cogent, coherent arguments based on the best information at hand, who are comfortable talking with a state legislator, an NIH institute director, a TV talking-head, an athletic coach, a small town family doctor and a minister. Aspiring bioethicists would be well served to develop that full skill set and to seek out bioethics programs that can teach them to meet all of those needs.

Arthur Caplan, PhD
Sidney D. Caplan Professor of Bioethics
and
Emanuel & Robert Hart Director
Center for Bioethics
University of Pennsylvania

When Does Life Begin and End? -- the Debate Continues

Frederick Grinnell of Oxford University press in his blog post, Redefining Death — Again responds to the recent Nature editorial, “Delimiting death.” Grinnell’s post contributes to the ongoing public policy debate regarding the relationship between biological and spiritual life.

In addition to this post, there are several other articles that are of significance: Dr. James Bernat, neurologist at Dartmouth, wrote an article entitled Chronic Consciousness Disorders, Annu. Rev. Med. 2009. 60:381–92. The article notes that new functional neuroimaging techniques using PET and fMRI provide a new and complementary way to assess consciousness; that fMRI technologies are showing that 'persistent vegetative state' is not always clear cut -- that there is more of a continuum and that some 'PVS' patients are in fact closer to 'minimally conscious.' The author cites recent provocative studies suggesting that fMRI in unresponsive patients may detect evidence of conscious awareness when a careful neurological examination cannot.

Second, while doing research for my chapter on regenerative Nanomedicine, I came across this very interesting article, available at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2672310/ , entitled Shorting Neurons with Nanotubes by Gabriel Silva, a professor of bioengineering at UC San Diego. The abstract explains that new insights are emerging about the interactions between brain cells and carbon nanotubes, which could eventually lead to the development of nanoengineered neural devices, i.e., possible neural prostheses.

Finally, there are excerpts on CNN of Dr. Sanjay Gupta’s Cheating Death, available at http://www.cnn.com/2009/HEALTH/10/12/cheating.death.excerpt/index.html, which explores novel applications of therapeutic hypothermia to prevent injury to the brain, along with other stories of life-saving medical discoveries.

These articles and recent findings all have profound implications for end-of-life decisionmaking. While recently, an editorial in Nature magazine called for expansion of the definition of death in order to increase organ donation (http://www.nature.com/nature/journal/v461/n7264/full/461570a.html ), it seems that between the new diagnostics, the potential for neuro-prosthetics, and what we are finding out about 'cheating death’, that we should not necessarily be expanding the definition of death, but realizing that we that are expanding the boundaries of life. In doing so, we need to consider the implications for an aging population, as well as the societal and environmental impacts.