Women's Bioethics Blog

Deus Sex Machina

lglenn3000@gmail.com (Linda MacDonald Glenn) — Fri, 20 Nov 2009 09:20:42 PST

(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

lglenn3000@gmail.com (Linda MacDonald Glenn) — Thu, 22 Oct 2009 07:23:35 PDT

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

lglenn3000@gmail.com (Linda MacDonald Glenn) — Mon, 19 Oct 2009 08:24:16 PDT

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.

Progress in Bioethics - MIT Press

noreply@blogger.com (Kathryn Hinsch) — Sun, 18 Oct 2009 18:39:36 PDT

Bioethics has become increasingly politicized over the past decade. Conservative voices dominated the debate at first, but the recent resurgence of progressivism and the application of its core values (social justice, critical optimism, practical problem solving) to bioethical issues have helped correct this ideological imbalance. Progress in Bioethics is the first book to debate the meaning of progressive bioethics and to offer perspectives on the topic both from bioethicists who consider themselves progressive and from bioethicists who do not. Its aim is to begin a dialogue and to provide a foothold for readers interested in understanding the field.

The chapter authors, leading scholars in the field, discuss the meaning of progressive bioethics, the rise of conservative bioethics, the progressive stance toward biotechnology, the interplay of progressive bioethics and religion, and progressive approaches to such specific policy issues as bioethics commissions, stem-cell research, and health care reform.

The arrival of a new administration in 2009—one that is open to progressive ideas and rejects ideological interventions in science—makes this book and its new approach to bioethics relevant and timely.

Contributors: Sam Berger, Daniel Callahan, Arthur L. Caplan, R. Alta Charo, Marcy Darnovsky, John H. Evans, Kathryn Hinsch, James Hughes, Richard Lempert, William F. May, Eric M. Meslin, Jonathan D. Moreno, Michael Rugnetta, Paul Root Wolpe, Laurie Zoloth

From: http://mitpress.mit.edu/catalog/item/default.asp?ttype=2&tid=12074

Kudos to Susan M. Wolf for her election to the IOM

lglenn3000@gmail.com (Linda MacDonald Glenn) — Fri, 16 Oct 2009 10:56:08 PDT

You may have noticed that we have been on hiatus, while we revamp and reorganize our blog, but I wanted to take this opportunity to give credit where credit is due: One of my heroes, Susan M. Wolf, has been elected to the prestigious Institute of Medicine. She is the McKnight Presidential Professor of Law, Medicine & Public Policy and the Faegre & Benson Professor of Law at U of MN, the founding Director of the Joint Degree Program in Law, Health & the Life Sciences and the founding Chair of the Consortium on Law and Values in Health, Environment & the Life Sciences. She is also a professor of medicine in the University's Medical School and a faculty member in the University's Center for Bioethics. She is also the author of Feminism and Bioethics: Beyond Reproduction, which was one of the first books that I read when I went back to school to get my degree in Biomedical Ethics. She has served as an inspiration to many in the field and she richly deserves this recognition and honor.

A Heartfelt Congratulations and Kudos, Susan!

The French health care system

marillerpat@gmail.com (patricia mariller) — Sat, 10 Oct 2009 08:21:19 PDT

Many countries envy the French health care system. The difficult reformation that is involved itself to the United States reminds me the fight of the French workers to obtain an equitable system. Nevertheless, the reformation of the United States is wished by the President Barack Obama and this decision seems to divide the American people, even beyond the borders.

Interesting it seem to we to retrieve the big points that do the force of the French system but equally not to conceal the problems.

The French health care system works on the basis of the solidarity between the active persons. Every month, the employees see a part of their salary versed to the State to finance the retirements and the social security besides the state ordinary taxes.

The social security is the strong point of the French health care system. The affiliated employees inform the social security of their health problems (benign diseases, engrave, disability, work accident). The social security is a cashdesk that will transfer the money of the contributions of salary to its affiliated employees according to the disease that they meet.

The cares opening right to repayment:
Medical consultations with a nonspecialized doctor or specialist
hospitalization
consultations and dental cares
purchases of medicines
As a whole of these medical practices, the cares will be refunded for a party. If the employee wishes to be more refunded, it is necessary for him to be affiliated with a mutual insurance company health.

Besides the cares, the social security towards a daily compensation to the employees on vacation diseases, in stop of work and to the women on vacation maternity.

The affiliation to a mutual insurance company health is not obligatory. On the other hand, to be affiliated with the social security is obligatory. Certain jobs have their special insurance cashdesk but it works as the social security.

The social security offers a cover health to the body of the employees and retired. Working thanks to the salaries of the active persons, the social security is today in deficit. More the unemployment in France is important, more the social security and the French health care system can be put in difficulty and to rediscover itself in a precarious position.

The social security is an equitable system that the employees want absolutely preserved.

The French health care system resting on the social loads, it did not take in load the persons in precarious position, without job and sometimes without residence. With the emergence of the precariousness, it was set up the universal healthcare coverage. It takes account of the inexistence or weakness of income and allows the free access to the medical cares.

It is certain that even if the French healthcare system is equitable, it knows malfunctions. But it stretches to respect the constitutional texts requiring the care access to all.

The system of American health seems to cost very dear. Can a common cash, like french social security, be a solution?

In French:
De nombreux pays envient le système de santé français. La réforme difficile qui s’engage aux Etats-Unis me rappelle la lutte des ouvriers français pour obtenir un système équitable. Toutefois, la réforme des Etats-Unis est souhaitée par le Président Barack Obama et cette décision semble diviser le peuple américain, même au delà des frontières.

Il nous semble intéressant de rapporter les grands points qui font la force du système français mais également ne pas occulter les problèmes.

Le système de santé français fonctionne sur la base de la solidarité entre les personnes actives. Chaque mois, les salariés voient une partie de leur salaire versée à l’Etat pour financer les retraites et la sécurité sociale outre les taxes étatiques usuelles.

La sécurité sociale est le point fort du système de santé français. Les salariés affiliés informent la sécurité sociale de l’ensemble de leurs problèmes de santé (maladies bénignes, graves, invalidité, accident du travail). La sécurité sociale est une caisse qui va reverser l’argent des cotisations de salaire à l’ensemble de ses salariés affiliés en fonction de la maladie qu’ils rencontrent.
Les soins ouvrant droit à remboursement:
consultations médicales chez un médecin généraliste ou spécialiste
hospitalisation
consultations et soins dentaires
achat de médicaments
Dans l’ensemble de ces pratiques médicales, les soins sont remboursés pour une partie. Si le salarié souhaite être remboursé en totalité, il lui faut être affilié à une mutuelle santé qui versera la somme restante à hauteur des plafonds imposés.

Outre les soins, la sécurité sociale verse une indemnité journalière aux salariés en congés maladies, en arrêt de travail et aux femmes en congé maternité.

L’affiliation à une mutuelle santé n’est pas obligatoire. En revanche, être affilié à la sécurité sociale est obligatoire. Certains emplois ont leur caisse spéciale mais elle fonctionne comme la sécurité sociale.

La sécurité sociale offre une couverture santé à l’ensemble des salariés et retraités.
Fonctionnant grâce aux salaires des personnes actives, la sécurité sociale est aujourd’hui en déficit. Plus le chômage en France est important, plus la sécurité sociale et le système de santé français peut être mis en difficulté et se retrouver dans une situation précaire.

La sécurité sociale est un système équitable que les salariés veulent absolument conservés.

Le système de santé français reposant sur les charges sociales, il ne prenait pas en charge les personnes en situation précaire, sans emploi et parfois même sans domicile. Avec l’émergence de la précarité, il a été mis en place la couverture maladie universelle. Elle tient compte de l’inexistence ou de la faiblesse des revenus et permet aux bénéficiaires d’accéder à l’ensemble des soins gratuitement.

Il est certain que même si le système de santé français est équitable, il connaît des dysfonctionnements.
Mais il tend à respecter les textes constitutionnels exigeant l’accès des soins à tous.

Le système de santé américain semble coûter très cher. Une caisse commune comme la caisse de sécurité sociale lui permettrait-elle de faire des économies?

Bookclub Selection: Normal At Any Cost

noreply@blogger.com (Kathryn Hinsch) — Sat, 04 Jul 2009 10:00:08 PDT

The Women's Bioethics Project's July 2009 non-fiction bookclub selection is:

Normal at Any Cost: Tall Girls, Short Boys, and the Medical Industry's Quest to Manipulate Height by Susan Cohen and Christine Cosgrove.

From the Library Journal:

Two science journalists examine the fascinating history of medical science's flawed attempts to manipulate height and the ethics involved. In the first section, set primarily in the 1950s and 1960s, they discuss middle-class families who were urged to try to reduce their daughters' height before it was too late for them to be "successful adults." The tall girls were given estrogens to send them prematurely into puberty and force their growth plates to close. In the second half, the authors focus on the use of human-growth hormone to increase the height of naturally short children. Before synthetic-growth hormone was developed, there was a painstaking procedure for extracting it from cadaver pituitary glands. This defective process led to the spread of neurological diseases as horrible as Creutzfeldt-Jakob disease (the human version of mad cow). Interestingly, neither the growth hormone nor the estrogen resulted in systematically proven results. This startling look at medical ethics and history has implications for the future of "human improvement" therapies; recommended for large academic and public libraries.

Normal at Any Cost would also make a great text for introductory high school or college bioethics courses because it manages to tackle in an accessible and compelling manner a wide range of bioethical issues from the medicalization of social problems, the pharmaceutical industry’s influence on physician education, limits of informed consent, definition of therapeutic v. enhancement interventions, to the appropriate allocation of medical resources (social justice considerations).

Read it this summer.

Empire State will pay for human eggs for research use

noreply@blogger.com (Sue Trinidad) — Thu, 18 Jun 2009 10:52:50 PDT

According to The Scientist, the Empire State Stem Cell Board determined last week that it's ethical to pay women to obtain eggs for use in stem-cell research.

The ESSCB points to the practice of paying women who donate eggs for reproductive purposes, which is not prohibited under New York law, and argues that donation for research purposes is not meaningfully different from that practice. You can read the ethics board's statement here.

An interesting difference in this case, however, compared with the reproductive instance, is that ESSCB will be using taxpayer funds to buy eggs. (Yeah, yeah, they're careful to say they're not buying eggs ... they're paying donors. Anybody buy that distinction?)

Some articles on our radar screen this past week...

lglenn3000@gmail.com (Linda MacDonald Glenn) — Thu, 18 Jun 2009 05:13:10 PDT

Autonomy and Authenticity of Enhanced Personality Traits
Abstract: There is concern that the use of neuroenhancements to alter character traits undermines consumer's authenticity. But the meaning, scope and value of authenticity remain vague. However, the majority of contemporary autonomy accounts ground individual autonomy on a notion of authenticity. So if neuroenhancements diminish an agent's authenticity, they may undermine his autonomy. This paper clarifies the relation between autonomy, authenticity and possible threats by neuroenhancements.

Tech-assisted reproduction growing worldwide:
Worldwide report shows increase in assisted reproduction: 250,000 babies (approximately) born in 1 year.
Assisted reproductive technology (ART) is responsible for an estimated 219,000 to 246,000 babies born each year worldwide according to an international study. The study also finds that the number of ART procedures is growing steadily: in just two years (from 2000 to 2002) ART activity increased by more than 25%. As this technology becomes more accessible to more people, will this encourage the ART industry to go further in their efforts and should more regulation be considered?

Boy or Girl? As early as 10 weeks gestation, a new at-home test has an 80% accurate predication rate. But will this result in more female fetuses being terminated?

Should Politics and Values Be Removed from Science?

lglenn3000@gmail.com (Linda MacDonald Glenn) — Wed, 17 Jun 2009 07:02:44 PDT

Associate executive director of the Center for Genetics and Society and WBP supporter, Marcy Darnovsky argues in a new article in the Democracy Journal that for too long progressives have built a bioethics around opposition to the religious right, and have thus failed to explicate a positive vision. In an article complementary to the WBP’s report (downloadable here), Darnovsky outlines a framework for just such a vision, one that balances individual autonomy with the real social concerns raised by biotechnological advances, such as how will human biotechnologies reshape our sense of ourselves, our relationships, the shape and feel of the world we occupy together? Who will profit, who will lose, and who will survive?:

“For many progressives and liberals, President Barack Obama’s March 9 announcement on stem-cell research affirmed the now-conventional wisdom that virtue lies in protecting science from the interference of politics. Fulfilling a campaign promise, the president repealed his predecessor’s stem-cell funding restrictions and pledged to ensure that ‘scientific data is never distorted or concealed to serve a political agenda–and that we make scientific decisions based on facts, not ideology.’

Scientists and stem-cell research advocates celebrated. The president of the Christopher & Dana Reeve Foundation said he was thrilled that the new Obama policy will ‘remove politics from science.’ A vice president of the Juvenile Diabetes Research Foundation lauded the commitment to ‘keep politics out of science.’ John Kessler, director of the Northwestern University Stem Cell Institute, recalled Bush’s funding limit and labeled it a ‘really, really unwelcome intrusion of politics into science.’

The policy is certainly a victory for progressives. But the assumptions embedded in its reception deserve close examination. Embedded assumption number one is that Bush’s restriction on federal funding of embryonic stem cell research was part of a broad ‘anti-science’ agenda. Assumption number two is that this policy constituted an illegitimate incursion of politics into science. The third assumption–and the one of greatest import as progressive politics tries to keep pace with scientific developments–is that we want to insulate science from moral values and political commitments.”

For access to the complete article, click here (free registration required).

Obama at the AMA: The cost of inaction is greater

lglenn3000@gmail.com (Linda MacDonald Glenn) — Wed, 17 Jun 2009 14:08:46 PDT

(Some key excerpts: the entire speech can be seen here.)

Today, we are spending over $2 trillion a year on health care – almost 50 percent more per person than the next most costly nation. And yet, for all this spending, more of our citizens are uninsured; the quality of our care is often lower; and we aren’t any healthier. In fact, citizens in some countries that spend less than we do are actually living longer than we do.

Make no mistake: the cost of our health care is a threat to our economy. It is an escalating burden on our families and businesses. It is a ticking time-bomb for the federal budget. And it is unsustainable for the United States of America....

...But let there be no doubt – the cost of inaction is greater. If we fail to act, premiums will climb higher, benefits will erode further, and the rolls of uninsured will swell to include millions more Americans.

If we fail to act, one out of every five dollars we earn will be spent on health care within a decade. In thirty years, it will be about one out of every three – a trend that will mean lost jobs, lower take-home pay, shuttered businesses, and a lower standard of living for all Americans.

And if we fail to act, federal spending on Medicaid and Medicare will grow over the coming decades by an amount almost equal to the amount our government currently spends on our nation’s defense. In fact, it will eventually grow larger than what our government spends on anything else today. It’s a scenario that will swamp our federal and state budgets, and impose a vicious choice of either unprecedented tax hikes, overwhelming deficits, or drastic cuts in our federal and state budgets.

To say it as plainly as I can, health care reform is the single most important thing we can do for America’s long-term fiscal health. That is a fact.

And yet, as clear as it is that our system badly needs reform, reform is not inevitable. There’s a sense out there a

The question now is, how do we finish the job? How do we permanently bring down costs and make quality, affordable health care available to every American?

...

So let me begin by saying this: I know that there are millions of Americans who are content with their health care coverage – they like their plan and they value their relationship with their doctor. And that means that no matter how we reform health care, we will keep this promise: If you like your doctor, you will be able to keep your doctor. Period. If you like your health care plan, you will be able to keep your health care plan. Period. No one will take it away. No matter what. My view is that health care reform should be guided by a simple principle: fix what’s broken and build on what works.

...

The second step that we can all agree on is to invest more in preventive care so that we can avoid illness and disease in the first place. That starts with each of us taking more responsibility for our health and the health of our children. It means quitting smoking, going in for that mammogram or colon cancer screening. It means going for a run or hitting the gym, and raising our children to step away from the video games and spend more time playing outside.

It also means cutting down on all the junk food that is fueling an epidemic of obesity, putting far too many Americans, young and old, at greater risk of costly, chronic conditions. That’s a lesson Michelle and I have tried to instill in our daughters with the White House vegetable garden that Michelle planted. And that’s a lesson that we should work with local school districts to incorporate into their school lunch programs.

Our federal government also has to step up its efforts to advance the cause of healthy living. Five of the costliest illnesses and conditions – cancer, cardiovascular disease, diabetes, lung disease, and strokes – can be prevented. And yet only a fraction of every health care dollar goes to prevention or public health. That is starting to change with an investment we are making in prevention and wellness programs that can help us avoid diseases that harm our health and the health of our economy.

But as important as they are, investments in electronic records and preventive care are just preliminary steps. They will only make a dent in the epidemic of rising costs in this country.

..
Let me be clear: identifying what works is not about dictating what kind of care should be provided. It’s about providing patients and doctors with the information they need to make the best medical decisions.

...

But alongside these economic arguments, there is another, more powerful one. It is simply this: We are not a nation that accepts nearly 46 million uninsured men, women, and children. We are not a nation that lets hardworking families go without the coverage they deserve; or turns its back on those in need. We are a nation that cares for its citizens. We are a people who look out for one another. That is what makes this the United States of America.

Now, even if we accept all of the economic and moral reasons for providing affordable coverage to all Americans, there is no denying that it will come at a cost – at least in the short run. But it is a cost that will not – I repeat, not – add to our deficits. Health care reform must be and will be deficit neutral in the next decade.

There are already voices saying the numbers don’t add up. They are wrong. Here’s why. Making health care affordable for all Americans will cost somewhere on the order of one trillion dollars over the next ten years. That sounds like a lot of money – and it is. But remember: it is less than we are projected to spend on the war in Iraq. And also remember: failing to reform our health care system in a way that genuinely reduces cost growth will cost us trillions of dollars more in lost economic growth and lower wages.

That said, let me explain how we will cover the price tag. First, as part of the budget that was passed a few months ago, we’ve put aside $635 billion over ten years in what we are calling a Health Reserve Fund. Over half of that amount – more than $300 billion – will come from raising revenue by doing things like modestly limiting the tax deductions the wealthiest Americans can take to the same level it was at the end of the Reagan years. Some are concerned this will dramatically reduce charitable giving, but statistics show that’s not true, and the best thing for our charities is the stronger economy that we will build with health care reform.

But we cannot just raise revenues. We also have to make spending cuts in part by examining inefficiencies in the Medicare program. There will be a robust debate about where these cuts should be made, and I welcome that debate. But here’s where I think these cuts should be made. First, we should end overpayments to Medicare Advantage. Today, we are paying Medicare Advantage plans much more than we pay for traditional Medicare services. That’s a good deal for insurance companies, but not the American people. That’s why we need to introduce competitive bidding into the Medicare Advantage program, a program under which private insurance companies offer Medicare coverage. That will save $177 billion over the next decade.

Second, we need to use Medicare reimbursements to reduce preventable hospital readmissions. Right now, almost 20 percent of Medicare patients discharged from hospitals are readmitted within a month, often because they are not getting the comprehensive care they need. This puts people at risk and drives up costs. By changing how Medicare reimburses hospitals, we can discourage them from acting in a way that boosts profits, but drives up costs for everyone else. That will save us $25 billion over the next decade.

Third, we need to introduce generic biologic drugs into the marketplace. These are drugs used to treat illnesses like anemia. But right now, there is no pathway at the FDA for approving generic versions of these drugs. Creating such a pathway will save us billions of dollars. And we can save another roughly $30 billion by getting a better deal for our poorer seniors while asking our well-off seniors to pay a little more for their drugs.

So, that’s the bulk of what’s in the Health Reserve Fund. I have also proposed saving another $313 billion in Medicare and Medicaid spending in several other ways. One way is by adjusting Medicare payments to reflect new advances and productivity gains in our economy. Right now, Medicare payments are rising each year by more than they should. These adjustments will create incentives for providers to deliver care more effectively, and save us roughly $109 billion in the process.

Another way we can achieve savings is by reducing payments to hospitals for treating uninsured people. I know hospitals rely on these payments now because of the large number of uninsured patients they treat. But as the number of uninsured people goes down with our reforms, the amount we pay hospitals to treat uninsured people should go down, as well. Reducing these payments gradually as more and more people have coverage will save us over $106 billion, and we’ll make sure the difference goes to the hospitals that most need it.

We can also save about $75 billion through more efficient purchasing of prescription drugs. And we can save about one billion more by rooting out waste, abuse, and fraud throughout our health care system so that no one is charging more for a service than it’s worth or charging a dime for a service they did not provide.

...

I want them to benefit from a health care system that works for all of us; where families can open a doctor’s bill without dreading what’s inside; where parents are taking their kids to get regular checkups and testing themselves for preventable ailments; where parents are feeding their kids healthier food and kids are exercising more; where patients are spending more time with doctors and doctors can pull up on a computer all the medical information and latest research they’d ever want to meet that patient’s needs; where orthopedists and nephrologists and oncologists are all working together to treat a single human being; where what’s best about America’s health care system has become the hallmark of America’s health care system.

That is the health care system we can build. That is the future within our reach. And if we are willing to come together and bring about that future, then we will not only make Americans healthier and not only unleash America’s economic potential, but we will reaffirm the ideals that led you into this noble profession, and build a health care system that lets all Americans heal. Thank you.

Bioethics Student Scholar Forum

noreply@blogger.com (Kathryn Hinsch) — Fri, 05 Jun 2009 10:55:59 PDT

As part of the Women’s Bioethics Project’s “Fresh Voices Initiative” we are launching the Bioethics Student Scholar Forum featuring outstanding commentary by bioethics graduate students from around the world. Student scholar Jennifer deSante, University of Pennsylvania, wrote the inaugural commentary. In the wake of Octomom, Jennifer explores whether physicians have an ethical obligation to screen IVF applicants:

Can We Screen IVF Applicants?
The birth of Nadya Suleman’s octuplets captured the interest of the country and media. What began as amazement quickly turned to disbelief, then condemnation, even outrage. Hardly anyone could understand what would motivate a woman to use in vitro fertilization (IVF) to have fourteen children. The media became obsessed with Ms. Suleman: following her around town, releasing child services records, even sending Dr. Phil to her house. As it became clear that this woman had little emotional or financial support to raise these children, people began to attack her for being irresponsible. But how much responsibility falls on the physician that provided Ms. Suleman with her many cycles of IVF?

You can find her provocative and well-written paper here. Congratulations to Jennifer – we welcome your fresh voice to the bioethics dialogue. And many thanks to her bioethics mentor, Arthur Caplan, Ph.D. for recommending Jennifer's work. If you are currently an enrolled bioethics graduate student and would like to have your paper considered for publication, please ask your bioethics mentor to nominate your work by emailing info (at) womensbioethics.org (include paper abstract and contact information.)

Udo Schuklenk on the Murder of George Tilly

lglenn3000@gmail.com (Linda MacDonald Glenn) — Wed, 03 Jun 2009 12:09:39 PDT

Colleague and friend Udo Schuklenk agreed to do a guest post/cross-link from his blog about the recent murder of physician George Tilly:

Another murder aimed at furthering the 'pro-life' agenda

It had to happen, the pro-life affirming loonies in the USA have taken yet another person's life. George Tiller, MD, a medical doctor specialising in reproductive health services, including medically indicated late-term abortions, was gunned down outside a church service in his home town. I'm probably as shocked about this killing as most reality based people. However, there's a deeper issue about this, at least to my mind.

The religious ideologies that triggered the murder of Tiller (and, in the past, others like him) want their adherents to subscribe to the view that from the moment of biological conception (marriage and all, you know the drill) the developing embryonic cell mass is of infinite value and should be treated as if it was a person. Well, persons - all other things being equal - are usually seen to have a right to life. At a minimum this is understood as a negative right, ie I must not interfere with such a person's right to life (by way of killing that person).

Let me be clear: I do think the view that something that has no central nervous system, that has no capacity to suffer, and that has no higher brain function has a right to life, makes no sense at all. What harm could possibly have been done to such a thing if it is destroyed? None at all, at least as far as I can see. It is for that reason that I reject the idea that we should treat the developing embryonic cell mass from the moment of conception as if it was a person. After all, it isn't a person, so why bother? It's a bit like saying that I should treat the leader of the opposition as if she was the leader of government. She might have the potential to be the next leader of government, but right now she is not. I surely cannot smuggle the right to be treated as if you were the leader of government into the potential to become the leader of government. A lot of potential things never eventuate (eg my potential to be an astronaut will not ever be realised).

However, and here is where I am troubled about this matter. IF someone really holds the barmy view that the embryonic cell mass after conception is infinitely valuable and should be treated as if it was a person from that moment onwards, it is only logical that you consider abortions murder. In turn it is perfectly reasonable for such a person to treat abortion providing health care professionals as if they were murderers. Surely it is not unreasonable (from such a person's perspective) to try to prevent further murders from happening. Ergo it should not come as a big surprise that Doctor Tiller was murdered by a 'good citizen' trying to prevent further murders at the hands of the good doctor.

So, the pro-life crowd's handwaving along the lines that the murderer is not one of theirs, makes not much sense. The ideology they propagate leads, to my mind inevitably so, to the killing of people like Tiller. Freedom of speech seemingly covers Catholic propaganda ministers freedom to spout lies about a supposedly ongoing 'genocide', whereby the deliberately and mistakenly refer to blobs of cells as 'children'. IF you really believe that propaganda, surely it's not unreasonable to conclude that in order to stop the genocide the perpetrators of the genocide must be stopped. Killing one person (eg Dr Tiller) is clearly seen by some of those on the pro-life side as the lesser of two evils. They are only able to reach this conclusion, however, because the church hierarchy continues to propagate outrageous nonsense about 'genocide' and 'holocaust' and whatnot when it comes to abortion. This is where the blame for Tiller's murder as well as that of others like him squarely belongs. You shouldn't be too surprised if some people at least do actually fall for your agitprop.

Living Better Through Matriarchy

lglenn3000@gmail.com (Linda MacDonald Glenn) — Wed, 03 Jun 2009 07:10:22 PDT

Although it's not directly related to bioethics, I couldn't resist:

'Men Live Better Where Women Are In Charge'

How does a matriarchy really work? Argentinian writer Ricardo Coler decided to find out and spent two months with the Mosuo in southern China. "Women have a different way of dominating," the researcher told SPIEGEL ONLINE.

SPIEGEL ONLINE: Mr. Coler, you are from Argentina, where macho behavior is not exactly unheard of. What was it like living for two months in the matriarchical society of the Mosuo in China?

Coler: I wanted to know what happened in a society where women determine how things are done. How do women tick when, from birth onwards, their societal position allows them to decide everything? We men know what a man is, we put that together quickly -- but what constitutes a woman? Although, I didn't get any wiser on that point.

SPIEGEL ONLINE: Is Mosuo society a paradise for feminists?

Coler: I had expected to find an inverse patriarchy. But the life of the Mosuo has absolutely nothing to do with that. Women have a different way of dominating. When women rule, it's part of their work. They like it when everything functions and the family is doing well. Amassing wealth or earning lots of money doesn't cross their minds. Capital accumulation seems to be a male thing. It's not for nothing that popular wisdom says that the difference between a man and a boy is the price of his toys.

SPIEGEL ONLINE: What is life like for a man in a matriarchy?

Coler: Men live better where women are in charge: you are responsible for almost nothing, you work much less and you spend the whole day with your friends. You're with a different woman every night. And on top of that, you can always live at your mother's house. The woman serves the man and it happens in a society where she leads the way and has control of the money. In a patriarchy, we men work more -- and every now and then we do the dishes. In the Mosuo's pure form of matriarchy, you aren't allowed to do that. Where a woman's dominant position is secure, those kinds of archaic gender roles don't have any meaning.

SPIEGEL ONLINE: What astonished you the most?

Coler: That there is no violence in a matriarchal society...

To access the rest of the article, click here.

Of Mice and HuMice, Part Deux

lglenn3000@gmail.com (Linda MacDonald Glenn) — Tue, 02 Jun 2009 08:53:29 PDT

We blogged about Clyven, the chimerical transgenic mouse with human intelligence, before; but now researchers have 'kicked it up a notch', by creating mice with the human version of a gene involved in language, called FOXP2. As the article in Discover magazine notes, "hile the mice didn’t exactly sit up and start reciting poetry about cheese, they did show some intriguing differences in both their vocal patterns and brain structure."

The region of the brain that was affected was the basal ganglia; the humanized mice grew nerve cells that had a more complex structure. Baby mice utter ultrasonic whistles when removed from their mothers; the researchers' findings that the baby hu-mice, when isolated, made whistles that had a slightly lower pitch, among other differences. Here the video with research Wolfgang Enard that provides a summary of the paper published in Cell:

So what does it mean when we 'uplift' animals? Colleague and friend George Dvorsky has some interesting thoughts on this here.

Turn on the Bright Lights, Baby...

lglenn3000@gmail.com (Linda MacDonald Glenn) — Sat, 30 May 2009 20:54:32 PDT

First, there were glowing cats.

Then, reports of glowing dogs.

Now, glowing marmose ts;

The gene for express the green fluorescent protein in their skin was delivered to the first marmoset embryos via a modified virus, but the significant news here is that the genetically modified primates that can pass their modifications to their offspring; it is the first known case that an introduced gene has been successfully inherited by the next generation in primates. Why is that important? Because medical researchers have yearned for an animal model that is closer to the human anatomy; researchers may now be able to produce whole groups of marmosets that mimic humans with diseases like cystic fibrosis or Alzheimers'.

While this breakthrough is exciting, warning bells have sounded that this is one step closer to the creation of human designer babies. So, let me know pose this question: How comforting or discomforting would it be to see your baby glowing the dark?

A Critical Link: The Environment and Women's Health Conference

noreply@blogger.com (Jill Krowinski) — Fri, 29 May 2009 12:51:55 PDT

A Critical Link: The Environment and Women's Health Conference
In recent years there has been an increased awareness of the connections between environmental contaminants, fertility, and health -- and a growing body of evidence supporting these concerns that link reduced fertility to pregnancy loss, adverse birth outcomes, reproductive tract abnormalities, learning disabilities in children, and various cancers to environmental contaminants. It is becoming increasingly clear to those of us who work for women's health that we must begin to turn our attention to the environmental toxicants that are affecting the ability of couples to become pregnant, have healthy pregnancies, and give birth to healthy babies.

At Planned Parenthood of Northern New England, we feel a responsibility as a health care organization to help our patients and communities make the link between human health and the products we put in our bodies, and in our homes and schools.

On September 10, 2009, PPNNE is presenting A Critical Link: The Environment and Women’s Health, in Burlington, VT. This ground-breaking conference will feature a keynote address by ecologist, author, and cancer survivor Sandra Steingraber. Steingraber and other environmental health experts, will participate in a panel discussion moderated by Dave Rapaport, Seventh Generation’s senior director of corporate consciousness, and Mia Davis, national grassroots coordinator for the Campaign for Safe Cosmetics, Planned Parenthood Federation of America President Cecile Richards will kick off the conference and share the Planned Parenthood perspective on providing greener, healthier choices to patients. For more information go to http://www.good-chemistry.org/

A.I:. Salvation or Annihilation?

lglenn3000@gmail.com (Linda MacDonald Glenn) — Thu, 28 May 2009 17:42:05 PDT

It's summertime and time for a new Terminator movie -- and Terminator Salvation asks the age-old question will Artificial Intelligence (the coming Superbrain, as the NY Times article dubs it) be our salvation or annihilation?:
"Today, artificial intelligence, once the preserve of science fiction writers and eccentric computer prodigies, is back in fashion and getting serious attention from NASA and from Silicon Valley companies like Google as well as a new round of start-ups that are designing everything from next-generation search engines to machines that listen or that are capable of walking around in the world. A.I.’s new respectability is turning the spotlight back on the question of where the technology might be heading and, more ominously, perhaps, whether computer intelligence will surpass our own, and how quickly."

Whether you are with Bill Joy on this or with Ray Kurzweil, A.I. is quickly coming to be part of our everyday lives. In a bizarre twist (hat tip to Jay Hughes on this) and juxtaposition of news articles, a recent article outlines how an A.I. System Suggests Arbitrariness of Death Penalty. Link to the abstract and article here.

Short People Got No Reason....(to gripe)

lglenn3000@gmail.com (Linda MacDonald Glenn) — Tue, 26 May 2009 12:11:42 PDT

That's not how the song goes, but according to a recent NPR podcast, a recent neuroscience study shows that short people actually may experience things more quickly than tall people. Really, it's more an experiment about the subjective nature of time than about tall vs. short -- from the same neuroscientist who brought us the Possibilitarian movement, Dr. David Eagleman combines psychophysical, behavioral, and computational approaches to understand the neural mechanisms of time perception. For example, touch your nose and toe at the same time. (Humor me, will you?) ... Did you feel the touch at the same time? I did. But if you think about it, shouldn't the signal from the toe take a tiny bit longer longer to get to your brain? After all, your nose is on your face, which is closer to your brain. So shouldn't you have felt the touch on your nose first?

Eagleman calls this phenomenon "temporal binding": the brain manages to synchronize what's happening even though sensory data comes through your eyes, ears, tongue and skin at slightly different times and speeds. According to Eagleman, it may be that our sensory perception of the world has to wait for the slowest piece of information to arrive; "Given conduction times along limbs, this leads to the bizarre but testable suggestion that tall people may live further in the past than short people."

To listen to the entire podcast, click here, and to read more about subjective time versus neural time, click here. And to learn more about Eagleman's Lab for Perception and Action, click here.

Excellence in Inter-American Health Awards

lglenn3000@gmail.com (Linda MacDonald Glenn) — Mon, 01 Jun 2009 05:47:14 PDT

The Pan American Health and Education Foundation (PAHEF) (www.pahef.org/awards/)is pleased to announce the extension of the deadline for the 2009 Call for Nominations of the Awards for Excellence in Inter-American Public Health Program to Monday, June 1, 2009, 5:00 p.m. Washington DC time.

The foundation is proud to administer this joint program with the Pan American Health Organization (PAHO). This program started in 1975 with the creation of the Abraham Horwitz Award for Leadership in Inter-American Health. Recipients of each award are recognized with a certificate of honor, a monetary award, and a paid trip to Washington DC.

Again, the deadline for submission of nominations for the five awards is now Monday, June, 1, 2009, 5:00 p.m. Washington DC time.

Abraham Horwitz Award for Leadership in Inter-American Health
Pedro N. Acha Award for Veterinary Public Health
Clarence Moore Award for Voluntary Service
Fred L. Soper Award for Excellence in Health Literature
Manuel Velasco-Suárez Award in Bioethics

Please be advised that the nomination process has changed. Now all award nominations must be submitted through an on-line application form.

We encourage you to forward this announcement to your friends and colleagues in Latin America and the Caribbean who may be eligible and share our interest in improving the health of the people of the Americas.

Lessons Learned from PrEP Trial Cancellations

noreply@blogger.com (Sean Philpott) — Fri, 15 May 2009 16:28:04 PDT

Between August 2004 and February 2005, the HIV prevention world was rocked by the suspension and cancellation of two pre-exposure prophylaxis (PrEP) trials in Cambodia and Cameroon. To the considerable surprise of researchers, advocates and donors, these HIV prevention trials became embroiled in escalating controversies and sparked protests by activists speaking on behalf of the communities where trial participants were being recruited. The activists not only raised questions about how the research was being conducted, but also challenged the fundamental ethics and underlying motives of the research.

Just this week, my colleagues at the Global Campaign for Microbicides released two in-depth case studies relating the events that led to these trial cancellations and extracting the lessons they provide for current and future research:

Research Rashomon: Lessons from the Cameroon Pre-exposure Prophylaxis Trial Site by Elizabeth McGrory, Andrea Irvin and Lori Heise
Preventing Prevention Trial Failures: A Case Study and Lessons for Future Trials from the 2004 Tenofovir Trial in Cambodia by Anna Forbes and Sanushka Muldaliar

Acknowledging that no single version of the events constitutes the “real story”, the case studies are built from extensive interviews with researchers, policymakers and other government officials, donors, NGO staff, and advocates to reconstruct often incompatible accounts of what eventually led to government intervention that halted the research. The case studies capture the political context and backdrop against which the controversies arose and the underlying and unaddressed conflicts that led to the costly collapse of two Phase 3 trials.

These reports are important and exciting reading for anyone interested in sound science, human rights, gender equality and communication across enormous cultural, social, and economic disparities. The HIV prevention field has made substantial progress since 2005 in forging mechanisms to be transparent and build trust between trial communities and researchers. Still, much remains to be done and the potential for conflict remains.

As the first PrEP trials move toward completion this year, these case studies offer a timely look at what we have learned and what pressing challenges remain unaddressed.

The two case studies are available on-line at http://www.global-campaign.org/.

UPDATE: Dr. Free-Ride over at the blog Adventures in Ethics and Science is going to be hosting a virtual journal club on these two case-studies. Join in the fun here.

Are your genes your property?

lglenn3000@gmail.com (Linda MacDonald Glenn) — Wed, 13 May 2009 17:00:12 PDT

In an earlier related post on biobanking, we asked our readers if they thought whether or not one's DNA should be private or publicly banked; the response was overwhelmingly in favor of privacy. Similarly, the notion of property rights in application to genes and genetic information presents serious challenges, as the Council for Responsible Genetics has long argued; their Genetic Bill of Rights includes a section that states "All people have the right to a world in which living organisms cannot be patented, including human beings, animals, plants, microorganisms and all their parts."

Now this issue is going before the courts: A group of patients, genetic researchers, and professional associations have filed a lawsuit against Myriad and the US Patent Office for patenting the genes known as BRCA1 and BRCA2. From the NY Times this morning:

"When Genae Girard received a diagnosis of breast cancer in 2006, she knew she would be facing medical challenges and high expenses. But she did not expect to run into patent problems.

Ms. Girard took a genetic test to see if her genes also put her at increased risk for ovarian cancer, which might require the removal of her ovaries. The test came back positive, so she wanted a second opinion from another test. But there can be no second opinion. A decision by the government more than 10 years ago allowed a single company, Myriad Genetics, to own the patent on two genes that are closely associated with increased risk for breast cancer and ovarian cancer, and on the testing that measures that risk.

On Tuesday, Ms. Girard, 39, who lives in the Austin, Tex., area, filed a lawsuit against Myriad and the Patent Office, challenging the decision to grant a patent on a gene to Myriad and companies like it. She was joined by four other cancer patients, by professional organizations of pathologists with more than 100,000 members and by several individual pathologists and genetic researchers.

The lawsuit, believed to be the first of its kind, was organized by the American Civil Liberties Union and filed in federal court in New York. It blends patent law, medical science, breast cancer activism and an unusual civil liberties argument in ways that could make it a landmark case. "

The complete article is accessible here; stay tuned as we follow this case, which could change the landscape in the field of genes and patents.

[Editor's note, added at 7:55pm, EDT: Colleague and WBP Supporter Art Caplan comments on this topic in his regular MSNBC column here, commenting that it is not always a bad thing when patent lawyers feel queasy. :>) ]

Swine Flu is not a Hoax

noreply@blogger.com (Jennifer Bard) — Mon, 11 May 2009 17:11:35 PDT

Here's a link to a piece I wrote that was in this weekend's Houston Chronicle. Although it is more from a public health perspective than a bioethics one, there's an aspect to disaster planning that I think should be of interest to us--which is the burden that falls to women because of the absolute lack of public health infra-structure. Who do you think has to take off of work when a school is closed or a family member is sick? How would any of us care for ourselves, our families, and our pets if we could not leave the house?
Although any infra-structure can be overwhelmed given a sufficient burden, we in the United States start in the postion: we have nothing to be overwhelmed.

The School of Athens and Bioethics

noreply@blogger.com (Kathryn Hinsch) — Thu, 07 May 2009 20:36:13 PDT

Raphael’s The School of Athens presents a scene familiar to anyone who has spent time in the world of bioethics, a swirl of heated discussion among passionate individuals from many backgrounds. The painter draws his viewer’s eye to the very spot I occupy every day as director of a public policy think tank in Seattle: the intersection of reality, possibility, and belief.

As biotechnology continues to outpace the imagination of all but the visionary, individuals face real life scenarios that were beyond our collective imagination a decade ago. Whom I would add to Raphael's visualization of knowledge and great conversation today? Or, put another way, what knowledge do we now have that the earlier philosophers did not? How has that knowledge – scientific, aesthetic, political, psychological - changed how we understand what it means to be a moral human being?

I would add representatives from the fields of genetics, sociobiology, evolutionary psychology and neuroscience. Genetics helps us understand our origin in and connection to the natural world. Sociobiology takes that knowledge further and helps us understand the complex relationship between nature and nurture. Evolutionary psychology will help us understand the emotional and cognitive adaptations we make to technological gains. Advances in neuroscience are going to pose some of the most important ethical questions yet about what it means to be human — challenging our concepts of free will, gender and genetic determinism, and what sets us apart from other species.

I believe the most important conversations in this century will be between the scientists and the broader community as we struggle to understand the implications of new technologies. Let's make sure we are all in the picture.

Beans (A Poem for Organ Donation)

noreply@blogger.com (L7Holly) — Sat, 09 May 2009 07:37:21 PDT

Beans

Because they fail to work properly on their own
A catheter was inserted into her abdomen
For easy access to the machine she uses daily
To help her kidneys balance the minerals that flow
In and out of her blood stream
The process is intricately connected to her food-intake
And the money she makes
The support she has from friends and fam
That worries about the fragility visible in her face
As she recants tales of fighting her landlord
Who doesn’t care about her handicap placard
Or the government that sits on the hill counting kidney transplants,
Comparing them to dollars and cents
As if they were beans in a jar
For years she’s struggled with doctors
Trying to make sense of the disease they cannot fully explain
- It causes swelling, bone loss, brain damage, and severe joint pain
She was taken off the transplant list, put back on… then taken off again
No one understands the agony she’s in
Not even I – her sister-friend
Although weak from frustration, mineral imbalance, and poverty
She writes letters to congress, speaks at rallies, and talks to anyone willing to listen
To God she prays for a kidney that works
As hard as she does to make life meaningful and whole
Like two kidney beans in concert
It is for KH that I write
In hopes that others will get to know the miracle of organ donation
And know that life…your life amounts to more than a hill of beans…

Posted by L7Holly