Bookclub Selection: Normal At Any Cost

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

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...

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?

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

(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

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

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

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

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...

First, there were glowing cats.






Then, reports of glowing dogs.









Now, glowing marmosets;









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

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?

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)

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

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

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?

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

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

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)

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

Women's Health Heroes Awards

The voting has started for Women's Health Hero over at the Our Bodies, Our Selves blog, and our very own Kathryn Hinsch has been nominated! Go Kathryn! Voting is only open until May 8, so get on over and vote!

Stop that Bug!

Colleague and WBP supporter Art Caplan explains that the 1918 offers some lessons for us today and that all of us have a responsibility to keep swine flu from spreading:

When faced with the threat of disease, the impulse of most Americans is to think about medical technology and miracle drugs. These are not likely to be much help in the battle against swine flu — but the history books might.

As history has proven, the best way to halt a deadly virus is to keep infected people away from others. In 1918, an influenza pandemic caused by a strain of flu similar to the one identified in Mexico killed more people than died in all of World War I. Up to 50 million people died worldwide. The greatest number of deaths occurred among young adults between the ages of 15 and 35.

At the time, young American men were being mustered into military camps from all corners of the country to prepare for the war. A few brought to those cramped quarters a new strain of flu. They quickly infected one another at an astonishing rate. As they were ordered to ship out, the epidemic spread along the train lines they used, with the flu jumping into the civilian population at every stop, right up to the harbors and port cities where they departed. Many experts think the flu followed these troops on their convoys into Europe, causing millions more to die.

We risk making that same fatal mistake this time around.

The Obama administration has developed plans to send National Guard troops from all over the U.S. to the Mexican border to help contain the violence from the bloody drug war raging there. I hope that by now the White House has realized this is a really, really bad idea. Sending the Guard right now to battle drug war lords could accelerate the spread of the swine flu among a high-risk group while giving the virus a free pass to travel all over the United States as the troops rotate home.

The 1918 pandemic offers additional stark lessons. While an effective vaccine may be found against this rare strain of swine flu, it will take many months to produce in large amounts. The best weapons we have right now are not glamorous and have little to do with doctors, drugs and hospitals: They are isolation, hygiene and controlling large gatherings of people.

New Zealand just quarantined a group of students who had flown back from Mexico. We may need to do the same thing.

Americans are not used to giving up individual liberty in the name of the common good. But that attitude is exactly what diseases such as the swine flu virus thrive on.

Heading out to church, the movies, restaurants, subways, supermarkets, day care centers, schools and other places where large numbers of people gather is a recipe for spreading the virus. What if infected people and those who have close contact with them won’t stay home? What if people with symptoms slog in to work anyway? Will we intrude on their basic rights and make them stay home? Are we willing to cancel public events and close schools, museums and churches until the infection passes, no matter how loud the protests?

Good hygiene — washing your hands frequently; wearing a filtering mask; keeping doorknobs and surfaces clean; being careful about sneezing, spitting and coughing — is helpful in controlling the spread of nearly all infectious diseases, swine flu included.

Each of us needs to take responsibility for stopping the spread of the flu.

What the nation needs is not to send an army to sit in the path of a deadly virus. Instead, we need to prepare for a short period of time when individual rights to go where we want, spend time with who we want and assemble as we want yield to the necessity of protecting the common good.

Reprinted from MSNBC website, original article can be found here.

The Handmaid's Tale - Revisited

Just in time for Mother’s Day (May 10th this year - mark your calendars!), the Women’s Bioethics Project Book Club has released its next selection: The Handmaid's Tale by Margaret Atwood. Download the book club kit developed by WBP advisory board member Sue Trinidad and join us as we explore the bioethical implications of commercial surrogacy, the role of genetic relatedness, redefining concepts of motherhood and the commodification of women's bodies.

Read and discuss with your Mom, your daughters, and friends – let us know what you think – join the conversation!

Panayiotis Zavos: I've Cloned a Human!

Whether the news stories on Panayiotis Zavos’ latest efforts to clone a human embryo are a hoax or not, there is no doubt that a tremendous amount of scientific progress has been made since the 1997 announcement that a sheep had been successfully cloned; cloned primates and pets and the creation of induced pluripotent stem cells and human-nonhuman chimeras are just a few of the scientific discoveries that get us closer everyday to the prospect of a cloned human being. The ability to radically alter human reproduction raises fundamental questions regarding the nature of our humanity and the character of our society.

Thousands of scientists, scholars, journalists, religious leaders, and policy makers have debated and discussed the ethical implications of a wide range of reproductive technologies, citing ethical concerns from safety, kinship disruption, and the commoditization of reproduction to concern for genetic diversity and the threat of eugenic application. While the benefits of many reproductive technologies – genetic testing, therapeutic cloning, genetic germline modification, and chimeric modeling, to name a few – are still being debated, reproductive cloning is nearly universally opposed. Most believe it currently poses unacceptable safety risks.

The opposition to reproductive cloning has led to a growing effort to ban the practice at a state, national, and international level. All this activity led us to consider the question: Is there a consistent theme in the ethical language used to justify banning reproductive cloning? Does the language reflect the moral values and common goals of the world community or does it unwittingly set the stage to undermine procreative liberty and scientific progress by appealing to vague ethical principles that serve a broader political agenda?

Before we support a worldwide ban on cloning, we need to carefully examine the ethical language used and be sure it reflects the common good. We must watch carefully as human dignity is employed to ban human reproductive cloning, for it can set the stage for banning other reproductive technologies such as IVF, genetic testing and genetic modification as well as therapeutic cloning.

You can read our full analysis here.

Poor justice for the innocent

Living a Life Sentence
Kelly Cobiella
CBS Sunday Morning
April 19, 2009

Anything can happen to anyone at anytime and good things do not always happen to good people. One of the worst nightmares that can happen in a person’s life is to be falsely imprisoned and, even worse, executed. But this recurring nightmare has been experienced by thousands of people through the years. Some spend the remainder of their lives in prison, never returning to the life they once knew. Thanks to the breakthrough of DNA evidence, many have been fortunate to be exonerated of rape and murder charges after years and even decades behind bars. Others are freed as a result of determined sleuth work on the part of supporters or loved ones, people recanting original testimonies, suppressed evidence being revealed, or the surfacing of new evidence. Whatever the circumstances of their release, all of the newly freed face the same challenges of reintegrating into society.

After the initial elation of finally achieving the dream of freedom, reality is a real slap in the face for the newly exonerated. While decades passed, society moved on, technology advanced, and life slipped away. Homes were lost, careers destroyed, families broken up, insurance coverage stripped away, and children grew up. Release brings a new beginning for the wrongfully accused, with a prison record on their resumes. Many were imprisoned based on little or no evidence. In some cases, evidence was suppressed by police or prosecutors, physical evidence planted by police, other evidence manufactured by forensic scientists, and lying witnesses knowingly placed on the stand by prosecutors, all for the purpose of getting a conviction, whether to advance a career or for political or other reasons.

Beverly Monroe was 55, with a successful career as a chemist, when she was convicted of murdering her companion, Roger de la Burde, in 1992, even though police thought it was a likely suicide. There was no other evidence against Beverly but the prosecutor withheld this crucial information during her trial. Beverly’s daughter, Kate, was just starting her career as a lawyer and she quit her job to devote the next six years to freeing her mother, which she was able to do in 1999 based on the suppressed evidence. Beverly is now 62 and trying to piece her life together. Although potential employers have been sympathetic to her story, her prison record remains, and she has only been able to find a job as an administrative assistant with no benefits, a stark contrast to the success she had enjoyed before her conviction.

Following her mother’s release from prison, Kate Monroe moved to Utah to work as executive director of the Rocky Mountain Innocence Project, which has worked to pass a compensation law to aid the wrongfully convicted upon their release from prison. The law, which was passed in 2008, awards about $35,000 for each year of false imprisonment up to 15 years, and expunges the person’s criminal record. Only 25 states have such a program. Virginia, where Beverly Monroe lives, is not one of them. Another group called the Innocence Project has helped free 235 people with DNA evidence; 17 of them were on death row. The Innocence Project also works to reform the criminal justice system in order to prevent recurrences of such stories, many of which are far worse than Beverly Monroe's.

It’s true that mistakes can happen. But it’s hard to imagine the sheer powerlessness and devastating bitterness one must feel at the hands of someone who deliberately steals your life from you for personal gain. We never hear the names of the prosecutors or police officers who tamper with evidence or suppress information. There must be a law that is protecting them. We need laws that provide accountability for such misconduct. Or maybe we have them but the victims simply don’t have the fight left in them or the resources to engage in another battle. Or maybe they’re just grateful to be free. It seems that there is a conspiracy of silence regarding this issue. It is fair that victims of the justice system should be compensated and their records expunged in the case of wrongful incarceration. State governments should all adopt laws similar to the one passed in Utah and I further propose that resources should be allocated to psychological counseling and job counseling, as well as job placement and other services to ease the transition from prison to society. It wouldn’t give back the lost years but it would help to make the remaining ones better.

What is happiness, really?

I recently purchased a book titled, The Geography of Bliss, in which the author, who spent 10 years as a foreign correspondent for National Public Radio visiting some of the unhappiest places on earth, decided to visit some of the happiest. There is actually a map of the happiest and unhappiest places on earth. Denmark has topped the charts for the past 30 years as the happiest country on earth. The United States is currently ranked number 17 out of 95, up from 23 in 2006 (Zimbabwe and Moldova ranked at the bottom), and number 97 out of 140 in peacefulness.

We as Americans believe that we have such a high standard of living. We have convinced ourselves, rightly so, that we are the greatest nation on earth, but we have so much to learn from other countries that appear to have so much less, yet are ranked higher in happiness. People in other countries have enough. We have excess everywhere we turn: extremes of wealth and poverty, consumerism, obesity, you name it.

I think that our American need to be the best and have the most has created a very unhealthy lifestyle, especially in areas like the Northeast. We spend too many hours working and driving and too little time relating, exercising, and enjoying ourselves. Parents compensate for being absent by spending guilt money on their children. More and more stuff and less and less quality time is the name of the game. We have also lost the fine art of conversation. People don’t have anything to talk about except who worked more hours than whom (which often turns into a p*ssing contest), what they bought, and everyplace they had to drive the kids to. People don’t talk about books they’ve read, or a meal at a special restaurant that they enjoyed, or the beauty of a sunset at their vacation island.

I had a conversation yesterday with a lovely man from Columbia. He described life in his town, where people dress up in the evening to go for a stroll through the square, the streets are closed off for walking on the weekend, and people don’t have a whole lot of money, but seem to really enjoy themselves and their relationships. And they are much healthier. I find that this is sadly lacking in our American lifestyle. People really do have a lot but no one seems to be enjoying any of it very much. Stress levels are very high and satisfaction is low.

But I think the authors might be confusing satisfaction and contentment with happiness. Morley Safer of 60 Minutes did a segment on Danish happiness in 2008 to find out why the Danes are so happy. A Danish research team concluded that, although the Danes do a lot of complaining, they have modest expectations; therefore, they are rarely disappointed. I lived in Denmark for 13 months from 1978-1979 and I can tell you that my stay there was one of the happiest times in my life. As a people the Danes have a very high self-esteem that borders on arrogance. They are very outspoken and not at all politically correct. But they sure are a lot of fun to hang out with. I recently asked a Danish friend what he thought of the researchers’ finding and he told me that, because of their social welfare system, “I know that whatever happens, I cannot fail.”

My friend’s statement pinpointed the contrast between life in the US, which can be one long adrenaline rush, and life in some of the happier, safer places on earth. People come to the United States for challenge, excitement, and the chance for a new life. It’s a crap shoot. We fight for our survival everyday here because failure can put us out in the street, as we have seen with our recent economic crisis. But that is also what makes us so creative, innovative, and competitive. We have to be—it really is a matter of survival.

But our failure right now can be a good thing. I think we have traded our health and happiness for having more stuff. This economic crisis is forcing young people in their 20s to move back home. It’s not the ideal, but families are getting closer. For the first time in decades, people are saving more, buying less. Everyone is getting more conscious of the environment now, too. We are resetting our values. I think this will all lead to healthier lifestyles in general. People are switching to new careers and learning new skills that they never would have considered before. I think we as Americans can adopt a healthier lifestyle, maybe tone it down a bit, but I don’t think we can ever be the happiest nation on earth—that would mean that we have stopped searching, exploring, daring, taking chances. Innovators and dreamers are never satisfied or content, and that is what we are. But we can be healthier while we are pursuing our bliss and that is something that we can achieve.

The latest on designer children...

From the Onion (no further comment needed :>) :


Disney Lab Unveils Its Latest Line Of Genetically Engineered Child Stars

Twitter Women’s Bioethics Project News

You can now follow the latest updates on the issues, programs, and priorities of the Women’s Bioethics Project, a public policy think tank based in Seattle, by adding khinsch to your Twitter list. Join the conversation!

Recent Twitter updates:
Welcome Margaret Lane, JD, the newest member of the Women’s Bioethics Project Advisory Board. Read her bio here.

Eggs for sale, wombs for rent, vaginas by the hour. Commodification a good thing? Scholar Heather Widdows says no. Find out why.

Bad Doc, Greedy Doc? Is it ethical for Physicians to add cosmetic procedures to their core practice?

Gregory Stock is probably right: to upgrade is human. Check out his TedTalk on how biotech will drive evolution.

Memory Erasing/Enhancing: the possibilities

A recent New York Times article asks: What would your life be like if you could erase certain memories by tinkering with a single substance in the brain? Imagine being made to forget a chronic fear, a traumatic loss, or even a bad habit. This notion seems like a cheesy Sci-Fi movie; however researchers are on the verge of making memory erasing a reality.

Dr. Todd C. Sacktor and his team of scientists from SUNY Downstate Medical Center have been able to show how a single dose of an experimental drug can, in animals, block the ability of the brain to hold onto specific types of memories.

The positive side to this research includes the fact that the drug blocks the activity of a substance that the brain apparently needs to retain much of its learned information. And if enhanced, the substance could help ward off dementias and other memory problems. With an estimated 100 million Alzheimer's and dementia sufferers worldwide by the year 2050, this appears to be a clearly beneficial target treatment.

This possibility of memory editing has enormous possibilities; yet it also raises huge ethical issues. For example, how will erasing specific memories affect humans? Any such drug could be misused to erase or block memories of bad behavior, even of crimes. It may seem beneficial to erase traumatic memories, but the erasure of other troubling memories, and the healthy dread of them, form the foundation of moral conscience.

I know that memories of punishments from parents and other authority figures have had a major impact on my decision making and resultant actions. If I had no recollection of the way I felt during punishments, then I would probably be apt to repeat the same mistakes. If somebody erased those types of memories, then it would be like somebody squashing my internal "Jiminy Cricket".

A substance that improves memory would raise larger social concerns in addition to ethical concerns. For example, when scientists find a drug to strengthen memory, will everyone feel compelled to use it? People already use smart drugs and performance enhancers of all kinds; so a substance that actually improved memory could lead to an arms race.

At this point in time, the ethical and social implications of memory erasing/enhancing are just another future dread. However, we can all find comfort in the fact that such drugs may never even make it to human trials. Also, we can always rely on our government to halt any possibilities of future research. I say this because there may actually be positive aspects to this type of drug, such as Alzheimer's treatment, and we know how the government has reacted to promising studies (pre-Obama days)…case in point: will stem cell treatments ever get off the ground?

Humanising Medicine

Currently, I am a medical writer for clinical trials. The human aspect of my job is hard to ignore considering that I am writing about subjects' immunology and safety results. However, a recent New York Times article took me back to my earlier days of working as a medical technologist in a hospital microbiology laboratory; a time when the human aspect was not always present.

As a technologist, I spent many hours processing serum samples through machines, and, at times, feeling like a machine myself. In other respects, I had to force myself to de-humanize the certain samples due to their inherent nature. For example, I would pretend that stool samples were actually mud; however, it was difficult to keep the mental image of mud when that mud also contained corn.

The main point is the fact that the job duties became extremely mechanical in nature. The workload was high, and the manpower was low. Therefore, tasks must have been performed efficiently without extended thought, and it was very easy to forget about the human aspect of the job.

Dr. Yehonatan Turner, a radiologist from Jerusalem, appears to have the same problem in his field, but he thinks that he has come up with a solution.

When Dr. Turner began his residency in radiology, he was frustrated that the CT scans he analyzed revealed nothing about the patients behind them. So to make things personal, he imagined each patient was his father. But then he had another idea; to attach a photograph of the actual patient to each file.

Dr. Turner’s hunch turned into an unusual medical study. Its preliminary findings suggested that when a digital photograph was attached to a patient’s file, radiologists provided longer, more meticulous reports. And they said they felt more connected to the patients, whom they seldom meet face to face.

In the digital age, adding a photo to a file is a simple procedure, and the study’s authors say they hope it becomes a standard procedure; not just for radiologists, but also for pathologists and other doctors who rarely have contact with patients.

However, attaching photos to patient files could prove difficult in the United States. Privacy rules might require patient consent each time a photo was used.

Putting aside any ethical implications concerning privacy, the logistical considerations alone should be enough to thwart any thoughts of this photo system. Who supplies the photo? Would photo costs be covered under health insurance? What is done with the photos after a X-ray is processed? Would healthcare institutions need a separate filing area for all of these photos?

While Dr. Turner's heart seems to be in the right place, I think that his passion for photography and art should remain separate from his radiology career. I mean, where would the photograph madness end? If I were still a medical technologist, would I want to see the face of the patient's stool that I am plating?

I think the answer is that each individual in the medical field should take it upon themselves to find their own human inspiration behind mundane and mechanical tasks. For me, it was my once week expeditions out of the microbiology lab. I volunteered to be the individual to maintain the bloodgas machines in the Intensive Care Unit. If seeing people dying doesn't make you see the human aspect, then you're definitely in the wrong business.

Extending a woman's fertility indefinitely

In a quick and driveby post, a colleague and friend had commented that he and his wife were trying for another child, but they not had success recently -- he was still optimistic, though, and said that they would try again in another ten years -- and it looks like they might be able to!:

"Scientists have produced strong new evidence challenging one of the most fundamental assumptions in biology: that female mammals, including women, are born with all the eggs they will ever have.

In a provocative set of experiments involving mice, Chinese researchers have shown for the first time that an adult mammal can harbor primitive cells in her ovaries that can become new eggs and produce healthy offspring, they reported yesterday.

While much more research is needed to confirm and explore the findings, the work raises the tantalizing possibility that it could someday lead to new ways to fight a woman's biological clock, perhaps by stockpiling her egg-producing cells or by stimulating them to make eggs again.

The findings could also help speed stem cell research by providing scientists with a new source of eggs, which are crucial for producing embryonic stem cell lines tailored to individual patients and diseases but are difficult to obtain.

"This is a very big deal," said Roger G. Gosden, director of reproductive medicine at Cornell Weill Medical Center in New York, who was not involved in the research, published online by the journal Nature Cell Biology. "It is quite dramatic."

Full article here.

2009 Health Law Scholars Workshop

The Center for Health Law Studies at Saint Louis University and The American Society of Law, Medicine & Ethics (ASLME) are pleased to announce the

2009 Health Law Scholars Workshop

The Health Law Scholars Workshop is a collegial forum in which faculty new to health law and bioethics scholarship present works-in-progress and receive in-depth advice from experienced scholars and teachers in the field of health law and bioethics. Each author’s work-in-progress accepted for the Health Law Scholars Workshop will be read in advance by several faculty members in relevant fields. During the Workshop
weekend, each author presents his or her paper to the full group. After extensive oral feedback from the readers, the floor is opened for a sustained exchange between the presenter and full group.

A nominating committee selects the papers to be presented at the Workshop. The committee looks for papers that have an original thesis and will contribute to scholarly literature. The Workshop is designed
primarily to provide feedback on articles intended for spring submission to law review journals. The Workshop is not designed to review published work or papers already accepted for publication.

Those interested in presenting a health law or bioethicswork-in-progress at the Health Law Scholars Workshop should submit a one-page abstract of the proposed paper together with a resumé to Mary Ann Jauer at Saint Louis University School of Law by May 1, 2009  Because a blind selection process is used, please do not include the author’s name or institutional affiliation on the abstract.

SEND SUBMISSIONS TO:

Mary Ann Jauer, Program Coordinator
Center for Health Law Studies
Saint Louis University School of Law
3700 Lindell Boulevard
St. Louis, MO 63108

Phone:    314.977.3067
Fax:         314.977.3332
Email:     jauerma@slu.edu

View the Scholars Workshop Brochure by clicking here.

This Week's Dose of Woo: Amgydala coaching

In borrowing the above phrase from Orac, I chuckled when I overheard this humorous, tongue-in-cheek exchange between two colleagues discussing neuroscience:

"Everybody knows that the amygdala is the seat of the soul.  Just Google it.

Amygdala coaching by telephone or Skype is available for $90 US/ hour.
http://www.soulwork.net/sw_articles_eng/psychobiology.htm

Just trying to be helpful :>)

btw, Please note that amygdala counseling will revive dead philosophies but not dead philosophers."

LOL!

Just Say No to "Just Scoot up": The End of the Pap Smear

http://www.nytimes.com/2009/04/07/health/07virus.html?em

Here is in an insight into everything that's wrong with American Medicine. The New York Times report that a newly discovered dna test is so much more accurate than the traditional Pap smear as to make that humiliating and sometimes painful test (not to overshare, but that's my truth) obsolete. What might be an obstacle to this miracle? American Medicine's Paternalism.

According to Debbie Saslow, executive director of the American Cancer, her greatest problem in getting the Pap smear replaced by DNA testing is that
" [W]e haven’t been able to get doctors to go along,” Why not? Are doctors concerned about the cost or accuracy of the new test? Not at all. They are concerned about the ability of American Women to manage their own health. Dr. Saslow reports that “The average gynecologist, especially the older ones, says, ‘Women come in for their Pap smear, and that’s how we get them in here to get other care.’ We’re totally overscreening, but when you’ve been telling everyone for 40 years to get an annual Pap smear, it’s hard to change.”

I'd like to suggest that if there were a DNA test for prostate cancer that would replace the current hands-on method of diagnosis, it would be adopted faster than you could snap on a latex glove.

I have a student currently writing a paper on the gender inequalities of Health Insurance (why is Viagra covered but not birth control?), but I wonder if our bigger problem isn't that it's hard to focus on the goals of quality and cost effectiveness when you're blinded by paternalism. And lest anyone think this is a criticism of male doctors, it is not. The values of the medical profession in the United States are transmitted equally to men and women. While this quote by Dr. Saslow is directed signficiantly at older doctors (more of whom are probably male)I would be surprised if they are the only ones to endorse this view.

From Tragedy to Triumph

Scientist at Work: Alice W. Flaherty
From Bipolar Darkness, the Empathy to Be a Doctor
By Elissa Ely, MD
The New York Times
March 17, 2009

I’m glad to be writing about someone who used a personal tragedy to help others. Dr. Alice W. Flaherty had achieved more as a medical doctor, neuroscientist, and published researcher by the age of 35 than most people accomplish in a lifetime. However, a postpartum crisis of grief following the delivery of stillborn twins triggered the onset of mania that was characterized by hypergraphia, the compulsion to write anything and everything, anywhere and everywhere, including the use of her own body as a manuscript page. Dr. Flaherty was ultimately hospitalized for bipolar disorder. Her experience with mental illness led to a bestselling book, “The Midnight Disease: The Drive to Write, Writer’s Block and the Creative Brain,” and a new, empathetic approach to treating patients that stemmed from her own need for empathy during her illness.

Ten years after the initial onset of mania, Dr. Flaherty is director of the movement disorders fellowship at Massachusetts General Hospital, specializing in deep brain stimulation, and an assistant professor of neurology at Harvard Medical School. She applies her preoccupation with the neuroanatomy of empathy to the treatment of her own patients, always aware of the fact that she is also a patient. She has been able to channel this seeming disability into something greater: the ability to relate to patients from a place of experience, especially depression, that allows them to identify with her. Dr. Flaherty manages her illness with medication, but she still has periods of mania and she still writes on her arms. But she wouldn’t have it any other way. She uses her manic episodes as the driving force for new ideas about treatments and theories of the mind; the subsequent depressions are used to consolidate her thoughts and edit the flood of writing from the manic wave.

Such creativity and brilliance are characteristic of many patients with bipolar disorder: Jim Carrey, Robin Williams, Robert Downey Jr., Tracey Ullman, Sting, Jane Pauley, Winston Churchill, and Virginia Woolf are some names that may be familiar. Robert Downey Jr., one of the “brat pack” of the 1990s, attained notoriety for his well-publicized struggle with drugs and the law, as much as for his brilliant acting. Drug and alcohol abuse, hypersexuality, excessive spending, psychosis, and violence are all characteristics of the manic phase of bipolar disorder. The suicide rate is high. Many don’t achieve the level of insight that Dr. Flaherty has been able to attain in order to transform the mood swings into something constructive. Many patients don’t adhere to their treatment regimens and wind up losing careers, relationships, and even their lives.

Bipolar disorder is so difficult to treat because it often takes years to diagnose accurately. The standard therapies are valproic acid (an anti-seizure medication) or lithium (a mood stabilizer) and adjunctive anti-depressant and atypical anti-psychotic medications. These drugs cause numerous side effects, including weight gain, hyperglycemia, sexual dysfunction, and feelings of dullness. Many patients who have enjoyed the euphoria and high energy of hypomania and mania can’t tolerate the “earthbound” heavy feeling caused by their medications. An acute episode of mania or depression or refractory chronicity that result in hospitalization can take months and even years to rebound from. Not to mention the stigma of having a mental illness. Another physician and well-known spokesperson for mental disorders, Kay Redfield Jamison poignantly described her journey into madness in the autobiography, “An Unquiet Mind.” Dr. Jamison survived numerous suicide attempts before she was finally able to gain control of her disease and reclaim her life. Such is the course of bipolar disorder.

According to Dr. Flaherty, “Neurology and psychiatry should be treating the same organ.” Indeed, some psychiatrists do treat bipolar disorder as a neurological condition. But a mental illness is more than a condition; it is a person’s life. What distinguishes Dr. Flaherty from most caregivers of psychiatric patients is her own patient status. The injection of empathy and identification into the patient-physician relationship can have a more profound effect on the prognosis for that patient than simple adherence to a medication regimen. This type of relationship provides hope to patients. They are able to see a successful, healthy individual who had to transcend many of the barriers that they now face and translate that picture into a possibility for their own lives. Dr. Flaherty is able to empower her patients because she sees things as they would and can adjust her treatments accordingly. Caregivers in any situation have the opportunity to transform lives with a simply shift in perspective in their communication with patients. And it wouldn’t cost anything in terms of time or money.

Donna Proszynski

Women's Health Heroes Awards

When you hear the words “Women’s Health Hero,” who comes to mind? Whoever your heroes are, Our Bodies, Ourselves wants to know about them! They are seeking nominations to give awards to honor those who make significant contributions to the health and well-being of women. It’s a great way to publicly recognize people who make a difference in your life or the lives of others. Click on link above or the widget in our sidebar and let us know who your Women's Health Hero is!

Biobanking Throwdown: 2nd Round

We had posted earlier about the ongoing debate on the ethics of DNA databasing -- here is round two in the debate. Our poll is still open, let us know where you stand!

Is this anyway for a medical journal to behave?

Reprinted in part from the The Chronicle of Higher Education:

'JAMA' Orders Whistle-Blowers to Blow Their Whistles in Private

The longstanding ethical principle of medical students and physicians — “First do no harm” — appears to be taking on a new meaning at one of the world’s top medical journals.

The Journal of the American Medical Association, in an editorial published on Friday, has warned that anyone raising a conflict-of-interest complaint about one of its authors should do so in private to the editors, without telling any outsiders.

JAMA’s warning stems from a case involving Jonathan Leo, an associate professor of neuroanatomy at Lincoln Memorial University, in Tennessee, who found problems in a study published in JAMA by a University of Iowa psychiatry professor, Robert G. Robinson, about the use of antidepressants in stroke patients. Dr. Robinson, according to Mr. Leo, also didn’t disclose a financial relationship with the maker of the drug involved in the study.

Mr. Leo reported his concerns to JAMA in October. Finally, this month, he publicly revealed his complaint in a letter published in the BMJ (formerly known as the British Medical Journal). One week later, JAMA published a correction and a letter from Dr. Robinson conceding he had in fact been paid by the drug company and had failed to report that.

In its editorial, JAMA affirmed the need to guard against conflicts of interest. Yet JAMA said that, in the future, anyone suspecting a conflict involving one of its authors should tell JAMA and “should not reveal this information to third parties or the media while the investigation is under way.” JAMA said it could be trusted to handle the matter fairly.

“A rush to judgment may spark heat and controversy,” it said, “but rarely sheds light or advances medical discourse.”

JAMA editors denied suggestions by Mr. Leo and his university dean that the journal had threatened to damage the reputation of the university over Mr. Leo’s decision to publicly reveal his allegation against Dr. Robinson. JAMA did not say, however, what it would do if a whistle-blower behaved similarly in the future, in violation of JAMA’s new policy. JAMA also did not say how long whistle-blowers should expect the journal to take to look into their complaints.

Full article plus comments can be found here.