Tuesday, July 31, 2007

Small Things, Big Issues: Oversight of Nanotech

Press Release: Over Forty Groups Release Fundamental Principles for Nanotech Oversight, Citing Risks to the Public, Workers, and the Environment

With the joint release today of Principles for the Oversight of Nanotechnologies and Nanomaterials, a broad international coalition of consumer, public health, environmental, labor, and civil society organizations spanning six continents called for strong, comprehensive oversight of the new technology and its products.
The manufacture of products using nanotechnology–a powerful platform for manipulating matter at the level of atoms and molecules in order to alter properties–has exploded in recent years. Hundreds of consumer products incorporating nanomaterials are now on the market, including cosmetics, sunscreens, sporting goods, clothing, electronics, baby and infant products, and food and food packaging. But evidence indicates that current nanomaterials may pose significant health, safety and environmental challenges posed by nano-scale technologies have yet to be addressed.
As Chee Yoke Ling of the Third World Network explained, “Materials engineered at the nano-scale can exhibit fundamentally different properties–including toxicity–with unknown effects. Current research raises red flags that demand precautionary action and further study.” She added, “As there are now hundreds of products containing nanomaterials in commerce, the public, workers, and the environment are being exposed to these unlabeled, and in most cases, untested materials.”
George Kimbrell of the International Center for Technology Assessment continued, “Since there is currently no government oversight and no labeling requirements for nanoproducts
anywhere in the world, no one knows when they are exposed to potential nanotech risks and no one is monitoring for potential health or environmental harm. That’s why we believe oversight action based on our principles is urgent.”
This industrial boom is creating a growing nano-workforce which is predicted to reach two million globally by 2015. “Even though potential health hazards stemming from exposure have been clearly identified, there are no mandatory workplace measures that require exposures to be assessed, workers to be trained, or control measures to be implemented,” explained Bill Kojola of the AFL-CIO. “This technology should not be rushed to market until these failings are corrected and workers assured of their safety.”
“Nanomaterials are entering the environment during manufacture, use, and disposal of hundreds of products, even though we have no way to track the effects of this potent new form of pollution,” agreed Ian Illuminato of Friends of the Earth. “By the time monitoring catches up to commerce, the damage will already have been done.”
Ron Oswald, General Secretary of international trade union IUF, highlighted the importance of defending against the massive intrusion of nano-products into the global food chain, pointing out that “hundreds of commercially available products–from pesticides to additives to packaging materials incorporating nanotech–are already on the market or just a step away. Workers, consumers, and the environment must be adequately protected against the multiple risks this development poses to the global food system and the women and men who produce the food we all depend on.”
“The makers of these materials are winning patents based on novelty and uniqueness, but
industry then turns around and says their nano-products do not need to be regulated differently because they are the same as bulk materials,” pointed out Kathy Jo Wetter of ETC Group, an international civil society organization based in Ottawa, Canada. “This contradiction benefits industry, but it cannot stand. Mandatory, nano-specific regulatory oversight measures are required.”
“Although governments worldwide spent over $6 billion on nanotech R&D last year, research spending on risks and social effects comprises only a ‘nano’ portion of that,” noted Rick Worthington of the Loka Institute an organization that promotes public participation in all matters related to science and technology. “We’ve seen the outcome of unregulated ‘miracle technologies’ such as synthetic chemicals before in the toxic pollution of entire communities. A portion of the nano research on social and environmental issues should involve active participation by communities, whose insights can help us avoid the catastrophic problems experienced in the past.”
The coalition’s declaration outlines eight fundamental principles necessary for adequate
and effective oversight and assessment of the emerging field of nanotechnology:

I. A Precautionary Foundation: Product manufacturers and distributors must bear
the burden of proof to demonstrate the safety of their products: if no independent
health and safety data review, then no market approval.

II. Mandatory Nano-specific Regulations: Nanomaterials should be classified as new
substances and subject to nano-specific oversight. Voluntary initiatives are not

III. Health and Safety of the Public and Workers: The prevention of exposure to
nanomaterials that have not been proven safe must be undertaken to protect the
public and workers.

IV. Environmental Protection: A full lifecycle analysis of environmental impacts
must be completed prior to commercialization.
V. Transparency: All nano-products must be labeled and safety data made publicly

VI. Public Participation: There must be open, meaningful, and full public participation
at every level.

VII. Inclusion of Broader Impacts: Nanotechnology’s wide-ranging effects, including
ethical and social impacts, must be considered.

VIII. Manufacturer Liability: Nano-industries must be accountable for liabilities
incurred from their products.

“We’re calling upon all governmental bodies, policymakers, industries, organizations, and all other relevant actors to endorse and take actions to incorporate these principles,” said Beth Burrows of the Edmonds Institute, a public interest organization dedicated to education about environment, technology, and intellectual property rights. “As new technologies emerge we need to ensure new materials and their applications are benign and contribute to a healthy and socially just world. Given our past mistakes with ‘wonder technologies’ like pesticides, asbestos, and ozone depleting chemicals, the rapid commercialization of nanomaterials without full testing or oversight is shocking. It is no surprise that the public of the 21st century is demanding more accountability.” The complete document is available at numerous endorsing organizations websites, including www.icta.org.
Organizations can endorse the principles by emailing gkimbrell@icta.org.

Monday, July 30, 2007

It's Cool to be Smart

Occasionally, when the subject of blogging comes up, my friends who blog will ask me how I can manage to blog for so many places, or why I've chosen to blog where I do. It's always a very easy answer for me: I see the blogs I write for each filling very different niche's for my creative and academic work. And in specific, I write for this blog because I very strongly believe in the mission of the Women's Bioethics Project, and the idea of having a strong and collective voice for women in not just bioethics, but the sciences in general.

As Ariel Levy noted in her Colbert Report appearance earlier this year, our culture is starting to revere the female chauvinistic pig; young girls idolize Paris Hilton and Lindsay Lohan, and the media shows very few positive role models for girls - or at least what I would deem positive, showing that you can be both pretty and smart, or that your worth isn't in how small your clothes are and how blonde your hair is.

I don't want to idolize my youth, and say "things were better when..." - after all, I'm sure my parents thought Cyndi Lauper and mid-80s Madonna were as bad as I view Hilton, Lohan and their ilk these days. But I don't remember there being this overwhelming focus on it being bad to be smart, or desirable to be seen as dumb as a post. And I take some relief, today, in noticing via Wil Wheaton's blog, that I'm not the only one who thinks this: Danica McKellar, who some of you might remember as "Winnie" from The Wonder Years, has a new book coming out called Math Doesn't Suck.

CNN is running a short profile on the book, talking about the book and quoting McKellar's motivations for writing it:
The book includes tips to avoid mistakes on homework, ways to overcome test-day anxiety and profiles of three beautiful mathematicians. "I want to tell girls that cute and dumb isn't as good as cute and smart," she said.

I'm not in a position to write a book to inspire girls to be cute and smart. I'm not even in a place right now where I can do any one on one, big sister style participation in a local girl's life. But I am in a position where I can participate in a blog like this - and so I do, and hope that by adding my voice, we are all strengthened.

Shape Up or Pay Up

Continuing the reporting trend on weight and obesity, the LA Times is reporting that workers at an Indiana based hospital chain will be charged upwards of $30 every two weeks unless they are within blood pressure, weight, and cholesterol ranges that the company deems healthy.

While this is targeting more than just those who are obese - Clarian Health Partners are determining weight based on a BMI of 29.9 or greater - it's pretty likely that the majority of interest in this will focus on people who are heavier being penalized for being heavier, and not those who have a normal BMI but high cholesterol or blood pressure.

The article also discusses financial incentives being used by various companies, from the Los Angeles school districts to other health care insurers, that "reward" people for healthy lifestyles/behaviour by reducing their deductibles. For example, the UnitedHealthcare plan has a $5000 yearly (family) deductible that can be reduced to $1000 if the employee isn't obese and doesn't smoke.

Obviously these incentive programs cover a lot of ground - weight, smoking, blood pressure, cholesterol, etc. The question becomes - is this right? Is this the appropriate way to deal with spiraling out of control health costs? Should people be penalized for not being in good health? And is refusing to hire people because of their BMI the next logical step, after refusing to hire people who smoke?

Smoking is an addiction, and one that we know can be broken with effort and encouragement. But should obesity, high blood pressure, and high cholesterol - things that can be genetic - be looked at with the same light? Should you have to pay $60 a month because your father gave you his high cholesterol? Should you have a higher insurance deductible because you have a chronic health condition that leaves you unable to exercise as much as others, thus pushing your BMI higher than it should be?

Perhaps most troubling, though, is the simple fact that the "solution" to our growing health coverage crisis is to pass the cost along to the individual employee, who may or may not have direct control over the issue they are being financially penalized for.

Connecting the Dots

From Anna Quindlen at Newsweek:

A new public-policy group called the National Institute for Reproductive Health wants to take this contradiction and make it the centerpiece of a national conversation, along with a slogan that stops people in their tracks: how much time should she do? If the Supreme Court decides abortion is not protected by a constitutional guarantee of privacy, the issue will revert to the states. If it goes to the states, some, perhaps many, will ban abortion. If abortion is made a crime, then surely the woman who has one is a criminal. But, boy, do the doctrinaire suddenly turn squirrelly at the prospect of throwing women in jail.

Lawmakers in a number of states have already passed or are considering statutes designed to outlaw abortion if Roe is overturned. But almost none hold the woman, the person who set the so-called crime in motion, accountable. Is the message that women are not to be held responsible for their actions? Or is it merely that those writing the laws understand that if women were going to jail, the vast majority of Americans would violently object?

It is interesting that the conversation of punishment always centers around the doctors and never the woman. If abortions were illegal, could we really consider it anything less than first-degree murder? (It's willful... it's premeditated...)

You can read the rest of the article here.

You can see the YouTube video here. ** updated link**

Saturday, July 28, 2007

Where to start?

Linda kindly invited me to join you in posting items of interest and this is my first post on any blog ever so be kind if I've made obvious mistakes. A colleague send me this article suggesting it might be interesting when I next teach insurance law. To introduce myself, I am director of the health law program at Texas Tech University School of Law (and an adjunct at the TTU School of Medicine) and teach, among other things, bioethics, med mal, and insurance law. The legal issue of this case was whether the doctor was covered under his professional liability insurance--not for medical malpractice but for mistreating an employee. The concept of whether something is, or is not, in the scope of employement is a highly subjective finding. The most recent example of how subjective is the Valerie Plame decision in which a court found it in high administration official's scope of employment to disclose the identity of active CIA agents.
The larger issue here, of course, is how a health care professional imagined it was appropriate to implant "tusks" while a patient was unconscious and then distribute pictures for the amusement of the entire office. For the particular purposes of this blog, I suggest this post says a lot about the role of women in the workplace and as patients. Without suggesting that this particular dentist wouldn't have done this to a man, I would suggest that this article could be a good way to generate a discussion of professional ethics.
With best wishes,
Jennifer Bard, JD, MPH

Court: Dentist covered in tusk implanting prank
Story Highlights
Court rules insurance policy covers dentist who implanted tusks as joke
Employee sues dentist, who settles case for $250,000
Insurance company says intentional acts such as pranks aren't covered
Insurance company won't pay; dentist sues insurer

OLYMPIA, Washington (AP) -- An oral surgeon who temporarily implanted fake boar tusks in his assistant's mouth as a practical joke and got sued for it has gotten the state's high court to back up his gag.

A Washington court ruled a dentist's malpractice insurance covers practical jokes.

Dr. Robert Woo of Auburn had put in the phony tusks while the woman was under anesthesia for a different procedure. He took them out before she awoke, but he first shot photos that eventually made it around the office.
The employee, Tina Alberts, felt so humiliated when she saw the pictures that she quit and sued her boss.
Woo's insurance company, Fireman's Fund, refused to cover the claim, saying the practical joke was intentional and not a normal business activity his insurance policy covered, so Woo settled out of court. He agreed to pay Alberts $250,000, then he sued his insurers.
A King County Superior Court jury sided with Woo, ordering Fireman's Fund to pay him $750,000, plus the out-of-court settlement. The insurance company won the next round, with the state Court of Appeals saying the prank had nothing to do with Woo's practice of dentistry. On Thursday, the state Supreme Court restored Woo's award.
In a sprightly 5-4 decision, Supreme Court Justice Mary Fairhurst wrote that Woo's practical joke was an integral, if odd, part of the assistant's dental surgery and "conceivably" should trigger the professional liability coverage of his policy.
Dissenting Justice James Johnson said the prank wasn't a dental procedure at all and only "rewards Dr. Woo's obnoxious behavior and allows him to profit handsomely."
The back story, the court wrote, is that Alberts' family raises potbellied pigs and that she frequently talked about them at the office where she worked for five years.
Woo said his jests about the pigs were part of "a friendly working environment" that he tried to foster.
The oral surgery on Alberts was intended to replace two of her teeth with implants, which Woo did. First, though, he installed temporary bridges that he had shaped to look like boar tusks, and while Alberts was still under anesthesia, he took photos, some with her eyes propped open. Before she woke up, he removed the "tusks" and put in the proper replacement teeth.
Woo says he didn't personally show her the pictures but staffers gave her copies at a birthday party.
Woo's lawyer, Richard Kilpatrick, described the surgeon as a kindhearted, fun-loving man who was chagrined that an office prank turned out so badly. He was delighted with the high court's decision, Kilpatrick said.
Attorneys for the insurance company did not immediately return calls seeking comment. E-mail to a friend
Copyright 2007 The Associated Press. All rights reserved.This material may not be published, broadcast, rewritten, or redistributed.
All About Civil TrialsTrials

Friday, July 27, 2007

5 Surgeries You Really Don't Want to Have

CNN has a very interesting piece and what surgeries to avoid and why and what to do instead of going under the knife -- here the 5 surgeries you want to avoid and link to the rest of the article:

- Hysterectomy
- Episiotomy
- Angioplasty
- Heartburn surgery
- Lower back surgery

To read on, click here.

Patient in Gene Therapy Trial Dies

Rick Weiss of the Washington reports on the developments in a clinical trial for arthritis treatment with gene therapy:

"A patient in a gene therapy experiment died on Tuesday in what may have been a reaction to a novel treatment for arthritis, federal health officials said late yesterday.

The precise cause of death remains unexplained. But the event immediately revived memories of a similar tragedy in 1999, when teenager Jesse Gelsinger succumbed in a gene therapy test in which researchers were eventually shown to have violated safety rules.

That disaster was a major setback for the field, which for more than 15 years has sought to treat diseases by giving people new genes. The only documented successes -- in a handful of children -- were undermined when the treatment was found to have caused cancer in some."

To read the rest of the article, click here.

Thursday, July 26, 2007

Bots, Blade Runner and Bioethics

Continuing with the robots theme, an article from the UK sparked my interest -- forgot iPods and Blackberries, those are SO yesterday -- it's the machine-mind-body interfaces that will take us to the next stage in our evolution -- apparently, robotics is the next giant leap for mankind (but didn't we all know that?) --

”You want that story,” says Dr Stuart Meloy, laughing. It's a frantic day for the pain-relief surgeon at the Piedmont Anaesthesia and Pain Consultants in North Carolina, but the chance to talk about his discovery is irresistible. ”In 1998 I was placing a spinal-cord stimulator into a woman with leg pain,” he says, describing a pain-relief procedure where electrodes placed parallel to the spine stimulate nerves supplying the leg, removing the pain. ”When I turned the energy on, the patient let out something between a wail and a moan — very different from the ”Wow’ I sometimes hear.” Meloy leant around the curtains to ask the patient what she felt. She caught her breath and said: ”You're going to have to teach my husband how to do that.”

”I had no idea what she was talking about,” he chuckles. It turned out the electricity had given her an orgasm. She had another one when he tweaked the power to find out if that had caused it. After news leaked out that Meloy had patented a cigarette-packet-sized implant that could stimulate an orgasm using a handheld remote, the media went crazy. Everyone wanted to hear about "Dr Pleasure" and his "orgasmatron". But Meloy, who aims to have an affordable product, similar in price to breast implants, on the market in about three years, insists there is a serious reason for the device. According to the surgeon, orgasmic dysfunction affects about a quarter of women in the US, and he hopes that this implant will help women worldwide."

For more on this, read on here.

Domo Arigato, Mr. Roboto!

While we're plugging podcasts by our bloggers, check in to this "Florida Matters" radio interview with our blogger, Kelly Hills, talking about robotic ethics. She does a great job and scores extra points by talking about her murderous cats and sex dolls , um, 'companion' robots. She also talks about dangers of bonding with your robot and the proposed code of robot ethics -- you can hear her interview starting at 22 minutes after the show starts. Way to go, Kelly!

Towards a Womb with a View?

One of our bloggers, lawyer and retired judge Terry Tomsick, is in the process of writing a paper on the ethical and legal implications of ectogenesis, so it is with considerable interest that I saw this in New Scientist today:

Womb-on-a-chip may boost IVF successes

Can conception, the most intimate of human experiences, be automated?

Teruo Fujii of the University of Tokyo in Japan and his colleagues are building a microfluidic chip to nurture the first stages of pregnancy. They hope, eventually, to create a fully automated artificial uterus in which egg and sperm are fed in at one end and an early embryo comes out the other, ready for implanting in a real mother. They say using such a device could improve the success rate of IVF.

"While there have been many advances in the production of in vitro embryos, these embryos are still sub-optimal [compared] to their in vivo counterparts," says Matt Wheeler of the University of Illinois in Urbana-Champaign who is also working on automated IVF systems. One reason for this is that during IVF, eggs or embryos are often moved or washed with culture fluid, causing changes in temperature and pH, he says.

The rest of the article, click here.

To listen to a podcast of Terry's excellent talk about the topic of ectogenesis, click here.

Is Obesity Contagious?

Obesity seems to be the emerging topic of the week -- In keeping with the previous post, it seems that if you are obese, you might be able to blame your friends and family; from New Scientist magazine this week:
"They say it's not what you know but who you know. A new study suggests that this aphorism might hold true when it comes to your body weight.

If a friend of yours becomes obese, you have a nearly 60% higher chance of sliding into this category as well, according to the analysis. The finding has prompted researchers to call obesity a "socially contagious" disease in which a sense of what constitutes a normal body weight passes from one person to the next."

For the scoop on the whole enchilada, click here.

Wednesday, July 25, 2007

Effects of Obesity May Stretch Beyond Health

A report in the latest issue of Sociology in Education appears to indicate that obese girls are less likely to attend college than non-obese girls. The study was authored by UT Austin associate professor Robert Crosnoe, who noted several interesting things:
  • if obesity was uncommon in their high school they were less likely to enter college

  • the disconnect was more prominent if the girls were not white, or their parents did not attend college

  • there is no correlation between college attendance and physical size in boys

  • the obese girls had a negative self-image (who would have guessed?), but were also more likely than non-obese peers to attempt suicide, drink, and use marijuana

Of course, the most interesting thing I noticed was that the UT Austin press release specifically says "obese" in all their wording - the Austinist report on the press release uses the word "overweight".

Now, obviously these words mean different things in medical parlance - and might be at the point where they mean different things in the vernacular as well. After all, assuming the study used the (controversial) BMI levels, anyone with a BMI over 25 is overweight, while a BMI over 30 qualifies you as obese. There is clearly a range here.

Crosnoe did the study utilizing numbers from the National Longitudinal Study of Adolescent Health; I don't have access to the journal or the time to crunch the numbers myself, but it would be interesting to see just what the numbers are - overweight, obese, morbidly obese, or something different altogether.

I suppose the next step would then be to see whether or not something is being missed, or if it is true that obese/overweight women really do go to college less because of their weight - and if so, what can be done about it?

Man (and Woman's) Best Friend: They Feel Empathy, Don't They?

As the guardian/steward of four furry four-legged sentient beings (a/k/a canines), who rule my life and my household, it distresses me when I hear anyone describe them as 'mere animals' or 'property' -- which is why I was delighted to come across this week Scientific American blog on "Do Animals Feel Empathy":
'Do animals feel empathy? This question could draw scoffing dismissal from many scientists only a few decades ago. Now it receives marvelously productive attention in neuroscience, psychology, and the burgeoning field of neuroethology. Below, two leaders in these fields, Emory University primatologist Frans de Waal and University of Chicago neurobiologist Peggy Mason, review both the history of animal studies of empathy and a particularly thought-provoking recent mouse study from the McGill University lab of Jeffrey Mogil. As de Waal and Mason note, this clever study holds surprises about both the baseline and the limitations of empathy in these small, "simple" rodents. One can't read these reviews without seeing one's own empathetic capacities and limitations in a new light.'

Which only serves to illustrate that our relationship with all living beings, human or otherwise, is not something that can be neatly classified into nice little hierarchical packages -- our relationship with the other living beings on this planet is much complicated and nuanced than the "Great Chain of Being". A recent article and the corresponding open peer commentaries in the American Journal of Bioethics, Thinking About the Human-Neuron Mouse, suggests that conferring humanity is an an either/or proposition -- that one is either a human (and therefore, a person) or one is not (and therefore not a person, but mere property). Funny thing about the way the law has developed, though --
corporations and even ships are recognized as persons, even though they are not human. So perhaps it is time to start looking at in-between categories, a recognize that our differences are more of a continuum, rather than clear cut dichotomy. No one thing is for sure, as the above article and the recent AJOB article suggest: More work is needed on the question of cognitive abilities of human and non-human entities and what, if any, differences, there are.

Tuesday, July 24, 2007

Almost 2 years later, New Orleans Hospital still struggling

“I’ve been telling people, don’t bring your parents back if they are sick,” says Dr. David A. Myers, of New Orleans -- Almost two years later, the hospitals and healthcare system in New Orleans still remains gravely wounded and the prognosis continues to look bleak for the near future. More here.

Grand Jury Declines to Indict Dr. Anna Pou in Katrina Deaths

It's good to see reason prevail, at least once in a while -- From the Associated Press this afternoon:

"A grand jury Tuesday declined to indict Dr. Anna Pou, the surgeon accused of killing four seriously ill patients in the aftermath of Hurricane Katrina.

Pou and two nurses were arrested last summer after Attorney General Charles Foti's investigation concluded they gave four patients a "lethal cocktail" at Memorial Medical Center amid the chaotic conditions that followed the August 2005 storm.

Lawyers for the three said they acted heroically by staying to treat patients rather than evacuating.

Charges against the nurses, Lori Budo and Cheri Landry, were dropped after they were compelled to testify last month before the grand jury under legal guidelines that kept their testimony from being used against them.

The Orleans Parish grand jury had been investigating the charges since March.

Assistant District Attorney Michael Morales, who conducted the grand jury hearings, had asked the grand jurors to return one charge of second-degree murder and nine of murder conspiracy.

The grand jurors sat calmly while the judge read the possible charges and each response of "no true bill."

Morales said afterward that he could not comment on the decision." See the rest of the article here.

Clinical Ethics: Re-defining medicine and lives

A poignant article in the NY Times today illustrates tension the between patients, patients' advocates, and healthcare professionals, and the righteousness of all involved:

"About 15 years ago, I had a shy patient who ate nothing but white foods and who assaulted anyone who entered her air space on the hospital ward. She was mute but not uncommunicative, and with a little effort it was possible to learn her language.

Some of her problem was her psychosis. Most of it was her mother, who was her legal guardian, appointed by a court to monitor her medications. But the mother was also convinced that psychiatric medications were poison; the patient would go home on weekend passes and return with all her pills in bottles and without a shred of sanity.

This continued for months..." Rest of the article here.

Monday, July 23, 2007

The Period of Choice

[Cross-posted from blog.bioethics.net] --

Very soon in pharmacies across the country, the contraceptive Lybrel will become available to those women with a prescription. Instead of menstruating once a month, as with traditional oral contraceptives, or once every three months, as with the more recent Seasonale and Seasonique, women will be able to eliminate menstruation altogether.

Wyeth hails Lybrel as the great liberalizer (hence the name). Advertising from the manufacturer stresses the drug's practical benefits -- less time off from work, higher productivity, and healthier relationships.

Unfortunately, this marketing strategy has created a backlash in a community of women still reeling from the Supreme Court's most recent holding on abortion. Instead of framing the decision to use Lybrel as one of choice, the marketing campaign has been accused of being paternalistic ("use it because it will be better for your husband or your boss"). Whether or not the marketing team was composed of more men than women is unknown, but the consensus is that the advertisements indeed emphasize how wonderful Lybrel is for those surrounding the woman, as opposed to the woman herself.

Ever since the advent of the pill feminists have been concerned with the implications of treating menstruation as a disease as opposed to a natural occurrence. By characterizing the process as an ailment in need of treatment, such drugs only further enforce the view that a woman's body needs to be "controlled." At the same time, the multi-million dollar industry clearly indicates many women see the personal benefits of regulating menstruation, particularly those women who suffer from severe premenstrual syndrome.

So what's savvy Big Pharma to do? Focus on the benefits Lybrel will have for the woman on a personal level. Not only will this strategy serve the useful function of informing potential patients, but it will also emphasize what many women feel is threatened today - choice.

-Roopali Malhotra

Friday, July 20, 2007

Sperm donor wins landmark legal battle to keep son in country

Speaking of ownership of bodily materials, genetic or otherwise, in a landmark case in Ireland, the Supreme Court ruled it was in the best interest of the child's welfare to remain in the state with his biological father. A same sex couple had entered into an arrangement with this man, where he agreed to be the sperm donor; the couple and the man also entered into a written agreement that it would be in the best interest of the child to know his biological father and provided for regular visitation. However, several months after the child was born, the same sex couple complained the child's father had become too close. When the father found out that the couple was considering moving to to Australia for a year, filed for a temporary order to prevent the child's mother and her partner moving away for a year.
Full story here.

Pass the Placenta Pate, Please?

From USA Today: New mom, Anne Swanson, in Nevada had wanted to keep the placenta from the birth of her child, because her midwife had recommended that she ingest the placenta to gain nutrients and to prevent postpartum depression.(The practice, known as placentophagy, is not common and received with considerable skepticism by more traditional medical experts). But Anne had to be rushed to the hospital for an emergency C-section and the hospital refused to release the placenta after the birth, regarding it as hazardous medical waste. A district court in Las Vegas ruled that Ms. Swanson was entitled to keep the placenta as her property, even though it had been removed from her body -- a ruling that might have interesting legal and ethical implications if it were to be appealed, considering the impact the Moore vs Board of Regents case has had on legal issues in ownership and property issues of the body.

"I Told Him We've Already Got One . . ."

I was struck by a line in Linda's stem-cell post, below. It was a phrase I'd heard, in the same context, at a recent bioethics conference. It seems to me a rather odd thing for ethicists to be saying, and rather a bad idea to allow others to inject it unchallenged into the conversation about stem cells or any other ethical issue. Yet it encapsulates much of what has happened - and not to the good, I think - in bioethics in recent years.

[we may be] be only “a matter of months” from reaching the Holy Grail of biotechnology – producing an “ethical” human stem cell without using a human embryo

"Holy Grail"?

Leaving aside whether all of biotechnology is actually on a quest for the "Holy Grail", why exactly is that goal the creation of stem cells with a particular provenance (especially given that we're more or less swimming in stem cells ready for use already), and what about that makes those cells themselves "ethical"?

The issue, of course, is the controversy created over stem cells by those who view the human embryo as having moral standing equal to or greater than that of full human persons or the goals or projects that human persons may have. That vocal minority has succeeded in establishing its views and objections as practical barriers to almost all research carried out on human embryos, and to the harvesting of stem cells from such embryos. Given that the compromise position on that issue imposed by the Bush administration has proven increasingly unworkable, attempts have been made to find ways to move science forward in spite of such barriers. Some have sought alternate sources of funding to evade the federal ban, while others tout adult stem cells or other technological work-arounds as ways of conducting the research without using embryonic stem cells. From that latter perspective, the recent news of, supposedly, totipotent cells derived from pluripotent "adult" stem cells in mice was a welcome step forward. The thinking is that this may be a pathway to producing embryonic stem-cell equivalents without harvesting cells directly from embryos - thus answering objections to the use of the embryo.

It is understandable that those who have such objections would be interested in the recent report. But I still find it strange than anyone else is (for other-than-scientific reasons, at least), still less accepts it uncritically as some sort of ethical milestone.

What I think has happened is that the pro-science and pro-personhood communities have allowed themselves to be stampeded by religious activists, who have successfully imposed their particular beliefs as the perspectival framework on the stem-cell "controversy". That controversy itself was created out of whole cloth by those activists. That is, there is controversy over stem-cell research only in the sense that a specific part of a specific segment of the right-wing religious/political spectrum is offended by this research and have used their influence in the Republican party to interfere with it. It is an active controversy only because that minority is allowed to exercise its influence in this way. It is an active moral controvery - as opposed to being a straightforward exercise of power politics - only because the ethics and scientific communities, who are virtually unanimous in seeing no major ethical barriers to the work, have allowed themselves to be inveigled into a pretended moral argument actually fought on political grounds, where they cannot prevail but where their participation lends credibility to the moral claims propounded by the right-wing activists.

As a political strategy, this has paid huge dividends to the religious right. In adopting sectarian religious framing for an otherwise uncontroversial moral question - accepting a distinction between "ethical" and "unethical" stem cells, or that the development of non-embryonic totipotent cells is a necessary goal of stem-cell therapy research - researchers and ethicists have ceded to religious activists, as moral principle, the idiosyncratic beliefs that bring those activists to the struggle in the first place, and without which there would be no "controversy". Though virtually no one who is not ideologically committed to moral status for embryos on religious grounds regards this matter as even a live issue, they have in many cases implicitly ratified the manufactured moral objections of their opponents by accepting the challenge of solving problems whose moral significance is otherwise far from demonstrated. The matter of "ethical" stem cells thus functions for the religious right, in the research arena, the way creationism does in the educational sphere: the importance of their suggested solution to the problem is not that it fills a need in and of itself, but that seeking and accepting that solution implicitly concedes the truth of the beliefs that make it necessary. The difference is that, while the religious right's "equal time" demand was rejected by the courts in the case of creationism, their encouragement of the expenditure of time and resources on a search for other cells that might perform the functions of the cells already available has been adopted by the research community (with some strong-arming by the Executive Branch) as a legitimate goal. This not only diverts, to some degree, resources from research on existing totipotent cell lines, but it implicitly ratifies the assertion that research on embryonic cell lines is inherently questionable - again, a position that enjoys almost no support on grounds other than religious dogma. The implications for other questions involving embryos and fetuses are obvious, and an acknowledged part of the religious-right's strategy in these matters. I would think some kind of critical test of this putative "controversy" would be in order before so much ground would be given up so readily.

Retroverted adult stem cells are far from a "holy grail" in scientific terms. Even assuming that totipotency can be achieved by some manipulation of the cell's genes, doing so adds an extremely complex additional process to the further manipulation of those cells for therapeutic purposes. The use of totipotent cells for any therapeutic purpose is still in its earliest stages, and will, even when perfected, require extensive genetic invasions of the cellular development process. Each such manipulation raises the possibility of mishap, and the risk to the patient, even if beginning with normal embryonic stem cells. Partially-differentiated adult stem cells, manipulated first backwards and then forwards along a different developmental pathway, will always carry inherently greater risks simply because more has been done to them along the way, and there is thus more to go wrong. Besides that, insisting that the scientific community solve one immensely complex problem - how to force differentiated cells to alter themselves in ways they never do in nature, and to undo developmental processes that have already begun, to recover capacities that have already been lost - before even beginning to solve the already-daunting problem of guiding them along specific (but otherwise normal) developmental pathways, necessarily sets back the development of whatever cures may be possible by however long it requires to do that currently-unimaginable preliminary work. Other suggested - but so far almost entirely untested - sources of "ethical stem cells", such as William Hurlbut's proposed "Altered Nuclear Transfer" process, are even less scientifically grounded and require even more drastic genetic manipulations of the cell prior to implantation in a human body for therapeutic purposes. Putting promising stem cell work on hold, to go off on a tangential chase for a process to create, from differentiated cell lines, retroverted adult stem cells to perform the functions of the stem cells that we already have available, is a massive displacement of scientific effort, focus, and time. But that - all of the above - is what the "ethical stem cell" advocates would have us do.

That would seem to require some considerably compelling justification. But the only justification that is even offered is that these hypothetical retroverted adult stem cells are "ethical", while actual totipotent stem cells are not. The reason for that claim, again, is that the latter are derived from human embryos, to which some (not all) among the religious right object. Absent this objection - absent only the assertion that there is no "ethical" way to conduct research on stem cells derived from human embryos - there is no "controversy" over the issue at all, and there is no reason at all for these alternative lines of research. (NB: Some forms of this research - including the effort to control the differentiation pathway both forwards and backwards - are inherently scientifically valuable and should go forward. But that is incidental to their implications for so-called "ethical stem cells".) To emphasize that: the search for "ethical" stem cells has no importance whatsoever, other than the fact that it responds to objections raised by a certain segment of the religious right and grounded on their religous beliefs. There is no need for them otherwise, and they are less desirable therapeutically than the already-available alternative of actual embryonic stem cells. Such lines of research, and the diversion of time and resources they represent, have no point unless that religious objection is demonstrated to be a compelling moral claim. But the question of the use of embryos can be and has been debated extensively, with, again, an almost-unanimous consensus among the community of ethicists and widespread support within the general public.

So, why has the research community adopted, even implicitly, as its "Holy Grail", the almost literal "Holy Grail" of the religious community? How is it that the ethics community accommodates such manipulative, distracting, and dubious rhetoric without demur? I think this language, in the context of the stem-cell controversy, and in fact the existence of that "controversy", expose a failure to interrogate the conceptual and rhetorical framing of the issue assumed, and brought into the ongoing discourse, by those who have made it their business to take an obstructive stance toward this work. In acknowledging, even implicitly, that it is important to find "ethical stem cells" to replace the "unethical stem cells" currently under study, an opportunity is lost to ask on what grounds such concepts have entered the discussion to begin with, and how it is possible to apply the evaluative term "ethical" to biological entities as such, let alone single cells. But it may not be too late,yet, to abandon the quest for the Holy Grail.

Thursday, July 19, 2007

Biopolitics at the Bedside

In my opinion, it's not the doctors nor the scientists who have the most interesting insights into bioethics. It's the dreaded lawyers. And if you find one with a Masters of Theology, you can be sure they have important and compelling ideas on life and death. I recently came across an essay published in the Journal of Legal Medicine by Joshua E. Perry, Assistant Professor (School of Medicine and Law School) at Vanderbilt University. In it, Dr. Perry asks, and answers, the question "why has the anti-abortion movement obsessed with the beginning of life and seized on the issue of end-of-life feeding tubes?" He ultimately concludes that "biopolitics in the early twenty-first century United States context is about strategies and agendas for controlling and regulating the bodies of individuals even at the bedside as they lie dying. Politicized interventions that seek to control and regulate the personal and private space of one's final exit, in an effort to promote the 'culture of life' cliche, must be identified and resisted as abuses of biopolitical power that threatens individual decision making at the end of life." Right on!

Tuesday, July 17, 2007

Hormone Replacement Therapy Safer for Younger Women?

A best evidence review by Medscape indicates that "perspectives on hormone replacement therapy have undergone a dramatic change in the last decade, and current recommendations call for using hormone therapy at the lowest dose and shortest duration possible in order to treat menopausal symptoms. While many women have grown reticent to use hormone therapy even in the presence of severe menopausal symptoms, the current study suggests that the cardiac risk associated with hormone therapy may not be as significant among younger women." For the Medscape article, click here. (registration required). For the original article in the Journal of the American Medical Association (JAMA) that analyzes the longer term stats, click here.

Monday, July 16, 2007

Federal Guidelines for Newborn Screening of Genetic Disorders Recommended

From Science Daily (hat tip to James Hughes of IEET.org)

Most Babies Receive Recommended Newborn Tests, But Half A Million Still Not Screened For Serious Genetic Disorders

Science Daily - Nearly 90 percent of all babies born in the United States -- more than double the percentage in 2005 -- live in states that require screening for at least 21 life-threatening disorders, according to the latest March of Dimes Newborn Screening Report Card.

For the whole enchilada, click here.

Pharma Feeding Ads Directly to Consumer Debate

Should the Food & Drug Administration should be able to forbid companies from advertising directly to consumers until new drugs have been on the market for at least three years? Representative Henry Waxman says so -- from Business Week:

"If Representative Henry Waxman (D-Calif.) had his way, the little butterfly used to advertise the insomnia remedy Lunesta might not be allowed to flutter all over our TV screens, as it has incessantly since the drug was approved in late 2004. Waxman believes the U.S. Food & Drug Administration should be able to forbid companies from advertising directly to consumers until new drugs have been on the market for at least three years. He tried to mandate such a restriction by attaching it to a drug-safety bill. But on July 11 he came up short. After a debate centered on drug companies' right to free speech, the bill passed with virtually all restrictions on drug advertising stripped out.

The end of Waxman's proposal, however, may be the beginning of a fierce new debate over drug advertising..."

Access the rest of the article here.

Being without health insurance is no big deal --

From the NY Times today, an op-ed from Paul Krugman:
"Being without health insurance is no big deal. Just ask President Bush. “I mean, people have access to health care in America,” he said last week. “After all, you just go to an emergency room.”

This is what you might call callousness with consequences. The White House has announced that Mr. Bush will veto a bipartisan plan that would extend health insurance, and with it such essentials as regular checkups and preventive medical care, to an estimated 4.1 million currently uninsured children. After all, it’s not as if those kids really need insurance - they can just go to emergency rooms, right?

O.K., it’s not news that Mr. Bush has no empathy for people less fortunate than himself. But his willful ignorance here is part of a larger picture: by and large, opponents of universal health care paint a glowing portrait of the American system that bears as little resemblance to reality as the scare stories they tell about health care in France, Britain, and Canada.

The claim that the uninsured can get all the care they need in emergency rooms is just the beginning. Beyond that is the myth that Americans who are lucky enough to have insurance never face long waits for medical care.

Actually, the persistence of that myth puzzles me. I can understand how people like Mr. Bush or Fred Thompson, who declared recently that “the poorest Americans are getting far better service” than Canadians or the British, can wave away the desperation of uninsured Americans, who are often poor and voiceless. But how can they get away with pretending that insured Americans always get prompt care, when most of us can testify otherwise?

A recent article in Business Week put it bluntly: “In reality, both data and anecdotes show that the American people are already waiting as long or longer than patients living with universal health-care systems.”

The rest of article has been reprinted at the CommonsDreams.Org website.

Well said, Paul -- Anybody who has seen Sicko knows the movie starts out with the story of man who accidentally had two of his fingers lopped off and had to choose which finger to get sewn back on because he didn't have health insurance. But, what the hey, no big deal, right? -- Who needs fingers?

Merit-Based Payment of Pharmaceutical Treatments

Drug companies are beginning to putting their money where their mouths are — by offering a money-back guarantee. From the NY Times today:

"Johnson & Johnson has proposed that Britain’s national health service pay for the cancer drug Velcade, but only for people who benefit from the medicine, which can cost $48,000 a patient. The company would refund any money spent on patients whose tumors do not shrink sufficiently after a trial treatment.

The groundbreaking proposal, along with less radical pricing experiments in this country and overseas, may signal the pharmaceutical industry’s willingness to edge toward a new pay-for-performance paradigm — in which a drug’s price would be based on how well it worked, and might be adjusted up or down as new evidence came in.

“I think payers will say, ‘If the product works and it creates value, we will reward you for it,’ ” said Anthony Farino, a pharmaceutical industry consultant at PricewaterhouseCoopers. “ ‘If not, we won’t reward you.’ ”

It is far too soon to tell whether such a pricing paradigm can actually work, in particular because it can be difficult in many cases to measure how well a drug is working. And the approach would probably be most feasible in countries, like Britain, where the government is the primary payer."

Rest of the article here.

Saturday, July 14, 2007

Ordering a Pizza in the 2012

Alright, so this is not strictly bioethics, but it is an amusing cautionary tale from the ACLU about guarding your privacy. Check it out -- and don't even think about ordering a double meat pizza.

The Holy Grail of Regenerative Medicine

Embryonic Stem Cells have been dubbed the "Holy Grail of Regenerative Medicine" because of their ability to give rise new tissue in every part of the body — from the liver to the heart to the bones and the brain. And scientists around the world are working to harness these incredibly potent and malleable cells to cure a wide variety of diseases -- ranging from growing whole new organs to replacing damaged brain cells.

In a paper published online Wednesday in the journal Nature, researchers at McMaster University say they have discovered that "stem cells have a far more complex relationship with the cells around them — and that knowledge could open up entirely new avenues of research....
Previous studies in mice have shown that various types of stem cells hole up in little nests of cells known as niches, and these niches are located in specific spots within various tissues..."

Rest of the article here.

[Editor's note, added July 17, 2007: In an exclusive interview with The UK Times, Japan’s leading genetics researcher, Shinya Yamanaka, claims it will could be only “a matter of months” from reaching the Holy Grail of biotechnology – producing an “ethical” human stem cell without using a human embryo, he has said. For the full article, click here.]

NIMBY (Not-In-My-Back-Yard) and Assisted Suicide

For nine years, the headquarters of Dignitas, the assisted-suicide organisation has been the centre of Switzerland's alleged "suicide tourism"; a total of 700 people have taken their lives here.The residents of the housing block where Dignitas is located have called for a halt to the practice of assisted suicide:

"Gloria Sonny, 55, who has lived in the building for six years - or, as she calls it, "under the same roof as death" - headed a petition calling for Dignitas to go. "I'm not against assisted suicide," she said, "but this is a place where people live. It's the wrong place to help people die. I don't see why I should pay with the quality of my life because Switzerland deals with the topic in a more liberal way than other countries."

She said the building smelt of death and that she suffered nightmares that she would be forced into one of the "death flats" against her will and made to drink a fatal cocktail."

To read on, click here.

Friday, July 13, 2007

Are We Alone?: Alternative Life in the Universe

Life with an alternative biochemistry to that of life on Earth may be possible elsewhere in the universe, according to a new report from the National Research Council. The report recommends that the search for extraterrestrial life be broadened to consider this possibility and recommends research and missions in which the federal government should invest to increase our knowledge in this area.

The committee that wrote the report found that the fundamental requirements for life as we generally know it -- a liquid water biosolvent, carbon-based metabolism, molecular system capable of evolution, and the ability to exchange energy with the environment -- are not the only ways to support phenomena recognized as life. "Our investigation made clear that life is possible in forms different than those on Earth," said committee chair John Baross, professor of oceanography at the University of Washington, Seattle.

The report emphasizes that "no discovery that we can make in our exploration of the solar system would have greater impact on our view of our position in the cosmos, or be more inspiring, than the discovery of an alien life form, even a primitive one. At the same time, it is clear that nothing would be more tragic in the American exploration of space than to encounter alien life without recognizing it."

The tacit assumption that alien life would utilize the same biochemical architecture as life on Earth does means that scientists have artificially limited the scope of their thinking as to where extraterrestrial life might be found, the report says. The assumption that life requires water, for example, has limited thinking about likely habitats on Mars to those places where liquid water is thought to be present or have once flowed, such as the deep subsurface. However, according to the committee, liquids such as ammonia or formamide could also work as biosolvents -- liquids that dissolve substances within an organism -- albeit through a different biochemistry. The recent evidence that liquid water-ammonia mixtures may exist in the interior of Saturn's moon Titan suggests that increased priority be given to a follow-on mission to probe Titan, a locale the committee considers the solar system's most likely home for weird life.

"It is critical to know what to look for in the search for life in the solar system," said Baross. "The search so far has focused on Earth-like life because that's all we know, but life that may have originated elsewhere could be unrecognizable compared with life here. Advances throughout the last decade in biology and biochemistry show that the basic requirements for life might not be as concrete as we thought."

Besides the possibility of alternative biosolvents, studies show that variations on some of the other basic tenets for life also might be able to support weird life. DNA on Earth works through the pairing of four chemical compounds called nucleotides, but experiments in synthetic biology have created structures with six or more nucleotides that can also encode genetic information and, potentially, support Darwinian evolution. Additionally, studies in chemistry show that an organism could utilize energy from alternative sources, such as through a reaction of sodium hydroxide and hydrochloric acid, meaning that such an organism could have an entirely non-carbon-based metabolism.

Researchers need to further explore variations of the requirements for life with particular emphasis on origin-of-life studies, which will help determine if life can exist without water or in environments where water is only present under extreme conditions, the report says. Most planets and moons in this solar system fall into one of these categories. Research should also focus on how organisms break down key elements, as even non-carbon-based life would need elements for energy, structure, and chemical reactions.

The report also stresses that the future search for alien life should not exclude additional research into terrestrial life. Through examination of extreme environments, such as deserts and deep under the oceans, studies have determined that life exists essentially anywhere water and a source of energy are found together on Earth. Field researchers should therefore seek out organisms with novel biochemistries and those that exist in areas where vital resources are scarce to better understand how life on Earth truly operates, the committee said. This improved understanding will contribute greatly toward seeking Earth-like life where the conditions necessary for its existence might be met, as in the case of subsurface Mars.

Space missions will need adjustment to increase the breadth of their search for life. Planned Mars missions, for example, should include instruments that detect components of light elements -- especially carbon, hydrogen, oxygen, phosphorous, and sulfur -- as well as simple organic functional groups and organic carbon. Recent evidence indicates that another moon of Saturn, Enceladus, has active water geysers, raising the prospect that habitable environments may exist there and greatly increasing the priority of additional studies of this body.

To read the full report or download the podcast, click here.

Thursday, July 12, 2007

More on the Candidates Positions on Health Care

Considering that 45 million Americans do not have any health coverage and that 41% of adults are personally worried about health care or insurance costs, topping concerns about paying their rent or mortgage, being a victim of a terrorist attack or a violent crime, losing their job, or losing money in the stock market, and considering the popularity of the movie Sicko (which we've blogged about), it should come as no surprise that health care is a top domestic issue that the public wants presidential candidates to address, trailing only Iraq.

Recognizing the need to be fully informed and having the health care debate influenced by the public, two more informational articles and sites have popped today -- first, the Kaiser Family Foundation today launched a new website – health08.org – that will provide analysis of health policy issues, regular public opinion surveys, and news and video coverage from the campaign trail. Secondly, the New York Times has also compiled quotes and positions of all the candidates, and differs a bit than than the Huffington Post analysis mentioned in this blog earlier
-- I found it particularly interesting and encouraging that many of the candidates have held off on the details of their plans, citing that they want to hear from the public. After all, although it may not have felt much like it in the last few years, we do live in a democracy -- by the people, of the people, and for the people -- and our representatives are there to heed our voices, so make your voices known -- If this is important to you, let your representatives know!

Male Pregnancy Revisited...

The Empathy Belly is something couples rent so that the man can understand what the woman is going through when she's pregnant -- but Jen Graves want her partner, Patrick, to carry their child: "Scientists say it could be done. And my better half is the perfect candidate. All I have to do is convince him."

To read on, click here.

Wednesday, July 11, 2007

A Side by Side Comparison of the U.S. Presidential Candidates' Prescriptions for a Healthier Future

Finally, someone has done it: Prepared a Side by Side comparison, complete with charts and links, of the US presidential candidates positions on what to do about healthcare in the future. A hearty thank you to the Susan Blumenthal and her team at the Huffington Post for creating this helpful visual tool:

"The next president of the United States will confront major health policy decisions that will affect the lives of all Americans. With the first of the presidential caucuses and primaries only six months away, the pressure is on for the candidates to provide Americans with their plans to improve the nation's health care system -- and rightfully so. Despite spending over $2 trillion a year on health care -- 18% of the U.S. GDP and twice as much as any other nation -- the United States ranks only 45th in life expectancy and 37th in a World Health Organization study on the performance of national health systems." To read on, click here.

Considering that Michael Moore's film, Sicko, is emphasizing and bringing to public attention the advantages of a universal health care system, it will be interesting to see if any of these positions will change or be modified over the next few months.

Tuesday, July 10, 2007

Mom freezes her eggs as insurance policy for grandchildren

The annual meeting of ESHRE is taking place in Lyon France this week. Any time there is an annual meeting of fertility providers, there's bound to be a controvertial use of new reproductive technologies announced. The McGill Reproductive Center at Royal Victoria Hospital announced that they have frozen the eggs of a 35 year old woman. This wouldn't be newsworthy except that she did this to give her 7 year old daughter a chance of having a biologically related child one day. Her 7 year old daughter has Turner's Syndrome and will be infertile. If the girl actually does decide to use the eggs to have a child, biologically, it would be her half sibling. This isn't completely without precident. Women have already served as surrogate mothers, gestating their future grandchildren. Most psychologists are more comfortable with the mother in the giving role because "giving" has always been part of mothering. They tend to be less comfortable when a mother asks her teenaged (or older) daughter for eggs or to be a gestational carrier. The mother, in this case, insists that this is simply to give her daughter reproductive options when she grows up. Her child won't be pressured to use the eggs. Apparently, the announcement caused quite a stir in the audience, offending the Americans (go figure) while the Europeans seemed more comfortable with the idea.

Saturday, July 07, 2007

The Good, the Bad, and the Silly: News about Chocolate

A research article in the Journal of the American Medical Association reported that dark chocolate is so rich in the class of biochemicals called flavonols that it actually produces favorable effects on the cardiovascular system. Just 30 calories worth -- about the size of a Hershey's Kiss -- not only helped lower blood pressure but raised levels of nitric oxide, which relaxed blood vessels.

The researchers emphasize that it's a small amount that they're talking about -- not enough to justify overindulgence.

And David Leibovitz (who is living the sweet life in Paris), thinks this was a just silly marketing strategy.

I say, let them eat chocolate!

The latest excuse: HIPAA made me do it!

Mark Rothstein, chair of a privacy committing advising HSS on HIPAA, said that unnecessary secrecy promoted by HIPAA is a "significant problem." "It’s drummed into them that there are rules they have to follow without any perspective," said Rothstein. "So, surprise, surprise, they approach it in a defensive, somewhat arbitrary and unreasonable way."

Susan McAndrew, of HSS, said "Either innocently or purposefully, entities often use this as an excuse. They say 'HIPAA made me do it' when, in fact, they chose for other reasons not to make the permitted disclosures."

Some dismaying examples:

-Birthday parties in nursing homes in New York and Arizona have been canceled for fear that revealing a resident’s date of birth could be a violation.

-Nurses in an emergency room at St. Elizabeth Health Center in Youngstown, Ohio, refused to telephone parents of ailing students themselves, insisting a friend do it, for fear of passing out confidential information, the hospital’s patient advocate said.

-State health departments throughout the country have been slowed in their efforts to create immunization registries for children, according to Dr. James J. Gibson, the director of disease control in South Carolina, because information from doctors no longer flows freely.

These cases were from a recent NY Times article, which also documented instances where adult children caring for elderly relatives were arbitrarily excluded from access to information in life-threatening situations.

Have we forgotten the old age "The road to hell is paved with good intentions?"

[Hat tip to HR Moody, thanks!]

Good Medical Care and Aging

Playing defense is a skill rewarded in sports, but not so much in health care. Instead, we prefer "victory" in our "battle" against cancer, heart disease, etc. Is that why it's so hard to recruit students for the geriatric health professions?

A recent study from the University of Cincinnati showed that the number of certified geriatricians in the U.S. has declined 19 percent over the past decade to 7,100. At the same time, every 8 seconds a Boomer turns age 60 and the number of Americans over 65 is expected to reach 70 million by the year 2030. Yet the U.S. certifies only 315 new geriatricians each year, not enough to replace those headed into retirement. As the New Yorker points out, we're in danger of lacking good medical care for the last stage of life:

"Good medical care can influence which direction a person's old age will take. Most of us in medicine, however, don't know how to think about decline. We're good at addressing specific, individual problems: colon cancer, high blood pressure, arthritic knees. Give us a disease, and we can do something about it. But give us an elderly woman with colon cancer, high blood pressure, arthritic knees, and various other ailments besides an elderly woman at risk of losing the life she enjoys and we are not sure what to do." To read more, click here.

[Hat tip to H.R. Moody for bringing our attention to this]

Friday, July 06, 2007

Preimplantation genetic diagnosis makes it harder to get pregnant

For some time now, women who are undergoing in vitro fertilization (IVF) procedures have had the option of using preimplantation genetic diagnosis (PGD) to screen for disease. To perform PGD, a single cell is taken from a three-day-old embryo and tested for known genetic conditions. Only those embryos that pass inspection would be implanted.

Some women who seek PGD have a family history of genetic conditions (such as Huntington disease) that they wish to avoid passing on. Others may simply figure that--since IVF procedures generally produce more embryos than will be implanted--they might as well choose the healthiest ones they can. Either way, the idea behind PGD is that it increases the odds of a woman having a healthy baby.

Turns out, however, that it may decrease the odds of a woman having a baby at all. A study published in the New England Journal of Medicine today reports that PGD reduces older women's (defined in the study as women age 35 to 41) chances of becoming pregnant by about one third. It isn't known why this happens. It had been believed that removing one cell didn't harm the embryo, but it looks like that may not be the case.

So--it might be the end of the road for PGD as a routine screening process for IVF patients. . . but stay tuned. At the very least, women who are heading down this road need to be fully informed about the possible risks and benefits of PGD before they decide to proceed with testing. . . or maybe even before they decide to pursue IVF.

Tuesday, July 03, 2007

New Focus on Easing the Pain

Only about a third of U.S. hospitals now offer some form of palliative care, so it was with significant interest that I read this article in Washington Post this morning:

Palliative Care Helps The Very Ill. It May Also Keep Costs Down

By Joanne Kenen
Special to The Washington Post
Tuesday, July 3, 2007; Page HE01

David Thibault grows orchids as a hobby, but the elegant flower on his bedside tray did little to lift his spirits. He stared out the window of his room at George Washington University Hospital, waiting for lab results that could tell him if he had months, weeks or maybe only days to live...
to read on, click here.

[Editor's note, added July 17, 2007 at 6:37pm] -- Diane Meier, Director of the Center to Advance Palliative Care at the Mount Sinai School of Medicine, explains on Medscape why she thinks that given the evolving demographics of our aging population, hospital palliative care programs are a necessity for every hospital, not just an option:

Advances in modern medicine have resulted in unprecedented gains in human longevity. But the fact is that eventually most adults will develop chronic illnesses with which they may live for years. Research indicates that for most people, advanced disease is characterized by big trouble: inadequately treated symptoms[1-7]; fragmented care systems; poor communication among physicians, patients, and families[8,9]; and enormous strains on family caregivers.[10-13]

An artificial dichotomy still exists in the very fabric of our healthcare system -- cure vs comfort. This dichotomy ignores the fact that the overwhelming majority of people living with advanced illness require both life-prolonging and palliative treatments. Forcing a choice between cure and comfort until the end-of-life predictably results in preventable suffering during all other stages of a serious illness.[14,15]

To read on, click here (registration required)

Call for Papers

Special Issue of the International Journal of Feminist Approaches to Bioethics:
Transnational Dialogues in Feminist Bioethics

Guest-Edited by Arleen L. F. Salles and Constance Perry

Feminist thought has provided a fresh approach to the discussion of a broad range of issues in the health care context. Feminist bioethicists have reflected on the gendered, class, and racial aspects of euthanasia, resource allocation, the patient-physician relationship, and the use of biotechnology in healthcare. More recently, the debate has been enriched by the presence of feminist voices from different countries.

In this issue, the International Journal of Feminist Approaches to Feminist Bioethics seeks to encourage debate across national boundaries around issues in bioethics. We invite submissions that explore how differences between feminist thought in developing and developed countries can shape and contribute to the discussion of bioethical issues. Authors could choose to address this from a broad context or a specific issue of interest. We encourage collaborative submissions and papers and responses. The goal is to create a dialogue between diverse cultural, experiential, and national perspectives.

The deadline for submission is May 1, 2008. Papers should be no more than 8000 words. All submitted papers should be prepared for anonymous review, with any identifying references deleted. Authors should submit a separate title page, including contact information, as well as a statement that the paper has not been published previously and is not under consideration for publication elsewhere. Papers should include an abstract (under 250 words) and 3-5 key words. Papers should be submitted in Microsoft Word, as email attachments to Arleen L. F. Salles at sallesa@stjohns.edu or Constance Perry at cp28@drexel.edu

Sunday, July 01, 2007

Sicko weekend continues...

The movie Sicko asks "Who are we?" - What kind of people force someone to make choice between body parts because they can’t pay their medical bills? Or choose to turn away when and do nothing when it has been documented that our country has among the worst infant mortality rates in a modern country? And racial disparities? And what does it say about us as a people when the prisoners enjoy a more meaningful right to health care than our 9/11 rescue workers? The tragedy is not that the prisoners get health care, but that our rescue workers don't; it says we don't value life or care to promote human dignity.

Mahatma Gandhi once said, "The best test of a civilized society is the way in which it treats its most vulnerable and weakest members"... by this measure, the United States does not do well, because we have chosen to allow the healthcare industry to become profiteering, no longer about serving, no longer about treating individuals with respect. Care about restoring human dignity? Let's make sure basic healthcare is a right, not a privilege -- This is an issue that cuts across party lines and affects all of us -- and it's time we let our government and our representatives know how we feel about this -- and that we will come out in droves and will vote our conscience. This is a major step towards restoring our national reputation as a caring and compassionate country.