No Labeling of Cloned Food, says FDA

From the AP and CNN:
The government has decided that food from cloned animals is safe to eat and does not require special labeling.
The Food and Drug Administration planned to brief industry groups in advance of an announcement Thursday morning. The FDA indicated it would approve cloned livestock in a scientific journal article published online earlier this month.
Consumer groups say labels are a must, because surveys have shown people to be uncomfortable with the idea of cloned livestock.
However, FDA concluded that cloned animals are "virtually indistinguishable" from conventional livestock and that no identification is needed to judge their safety for the food supply...but critics of cloning say the verdict is still out on the safety of food from cloned animals.
"Consumers are going to be having a product that has potential safety issues and has a whole load of ethical issues tied to it, without any labeling," said Joseph Mendelson, legal director of the Center for Food Safety.

For the whole story, click here.

Most horrific story of 2006

It sounds beyond belief . . . I can only hope that this is not true -- newborn babies killed for their stem cells to create beauty products. But as this Special Report in the UK Daily Mail describes, the evidence is both compelling and deeply distressing (Warning: graphic descriptions below):

The babies who are murdered to order
By Matthew Hill

The plastic bag looks as if it contains meat. But then a right leg is taken from it and placed surgically on the morgue table, followed by the left one. Then the torso. The head follows, a gaping cavity where the brain used to be.

But it is only when the gloved hand of the pathologist examines the tiny fingers of a baby aged about 30 weeks that the full horror of what I am witnessing sinks in.

This shocking scene was captured on video at post-mortem examinations carried out on behalf of Ukrainian mothers who claim their babies were stolen from them at birth.

The film was shown to me by an incredibly brave charity worker called Tatyana Zhakarova, who represents up to 300 families who believe their healthy babies were deliberately targeted at a maternity hospital in the Ukraine's most easterly city of Kharkiv.

The babies, believes Tatyana, were taken at birth to have their organs and stem cells harvested as part of a sickening but highly lucrative international trade.

For the rest of article, click here.

Maintaining Your Brain

From the NY Times, some interesting questions and one of the health trends in 2007:

As Minds Age, What’s Next? Brain Calisthenics
By PAM BELLUCK
PROVIDENCE, R.I. — Is there hope for your hippocampus, a new lease for your temporal lobe?
Science is not sure yet, but across the country, brain health programs are springing up, offering the possibility of a cognitive fountain of youth.
From “brain gyms” on the Internet to “brain-healthy” foods and activities at assisted living centers, the programs are aimed at baby boomers anxious about entering their golden years and at their parents trying to stave off memory loss or dementia.
“This is going to be one of the hottest topics in the next five years — it’s going to be huge,” said Nancy Ceridwyn, co-director of special projects for the American Society on Aging. “The challenge we have is it’s going to be a lot like the anti-aging industry: how much science is there behind this?”
Dozens of studies are under way. Organizations like AARP are offering tips on brain health. And the Alzheimer’s Association conducts hundreds of Maintain Your Brain workshops, many at corporations like Apple Computer and Lockheed Martin. To read on, click here.

Interesting related links: Happy Neuron.com and MyBrainTrainer.com.

Enjoy your Chocolate this Holiday Season!

[Hat tip to R. Alta Charo for this Christmas gift] -- I know this bit of info will make my Christmas cheerier! And very Happy Holidays for the rest of our readers!
From Health magazine this month:

Chocolate Lovers: 6 Reasons to Cheer

by Marjorie Ingall

Listen to the way people malign chocolate: Sinful! Decadent! To die for! There’s even that popular restaurant dessert known as “Death by Chocolate.” But is this any way to talk about a loved one—especially during the season of comfort and joy? Not at Health. With evidence mounting that some kinds of chocolate are actually good for you, we come bearing gifts: six delicious reasons why you should nurture a chocolate habit (within reason) and taste-tested advice on what to try. Merry munching:

1. A happier heart
Scientists at the Harvard University School of Public Health recently examined 136 studies on cocoa—the foundation for chocolate—and found it does seem to boost heart health, according to an article in the European journal Nutrition and Metabolism.

“Studies have shown heart benefits from increased blood flow, less platelet stickiness and clotting, and improved bad cholesterol,” says Mary B. Engler, PhD, a chocolate researcher and director of the Cardiovascular and Genomics Graduate Program at the University of California, San Francisco, School of Nursing. These benefits are the result of cocoa’s antioxidant chemicals known as flavonoids, which seem to prevent both cell damage and inflammation.

2. Better blood pressure
If yours is high, chocolate may help. Jeffrey Blumberg, PhD, director of the Antioxidants Research Laboratory at Tufts University, recently found that hypertensive people who ate 3.5 ounces of dark chocolate per day for 2 weeks saw their blood pressure drop significantly, according to an article in the journal Hypertension. Their bad cholesterol dropped, too. People who ate the same amount of white chocolate? Nothing. (It doesn’t have any cocoa—or flavonoids.) Word to the wise: 3.5 ounces is roughly equal to a big bar of baking chocolate, so the participants had to cut about 400 calories out of their daily diets to make room. But you probably don’t have to go to those lengths. Just a bite may do you good, Blumberg says.

3. Muscle magic
Chocolate milk may help you recover after a hard workout. In a small study at Indiana University, elite cyclists who drank chocolate milk between workouts scored better on fatigue and endurance tests than those who had some sports drinks. Yoo-hoo!

4. TLC for your skin
German researchers gave 24 women a half-cup of special extra-flavonoid-enriched cocoa every day. After 3 months, the women’s skin was moister, smoother, and less scaly and red when exposed to ultraviolet light. The researchers think the flavonoids, which absorb UV light, help protect and increase blood flow to the skin, improving its appearance.

5. Brain gains
It sounds almost too good to be true, but preliminary research at West Virginia’s Wheeling Jesuit University suggests chocolate may boost your memory, attention span, reaction time, and problem-solving skills by increasing blood flow to the brain. Chocolate companies found comparable gains in similar research on healthy young women and on elderly people.

6. Good loving (maybe)
Italian researchers wanted to know whether chocolate truly is an aphrodisiac. In a survey of 143 women published in the Journal of Sexual Medicine, those who ate chocolate every day seemed to have more sex drive, better lubrication, and an easier time reaching orgasm. Pass the Godiva, right? Not so fast. The women who ate chocolate were all younger than the ones who didn’t; it was age and not chocolate that made the difference. Still, if a double-chocolate raspberry truffle puts you in the mood, why let science get in the way?

Sex Matters When It Comes to Pain

An article in the Washington Post this morning by Francesca Lunzer Kritz made me chuckle because it could have been written about my self and my husband:

When I get a particularly nasty headache, I race for the ibuprofen bottle and down three 200-milligram tablets (a dose long ago approved by my doctor) and get on with whatever I was doing, comforted by the knowledge that I've taken action to dull the pain and that I will feel better soon. When my husband has a headache, he delays doing anything -- including telling me, for whatever comfort that might bring -- and succumbs to the ibuprofen (taking just two tablets) only when the pain is so severe he can't do much else...

The article goes onto to explain that growing research suggests that men's and women's nervous systems process pain information differently and act on it differently. The differences are important to recognize because it could help clinicians fine-tune pain treatments as need grows, especially with aging baby-boomers.

To read more, click here.

Paying Addicts Not to Have Children: Project Prevention

A very interesting article in the New Haven Register describes the situation which promoted a Connecticut mother to start a Project Prevention (formerly known as Children Requiring a Caring Kommunity or C.R.A.C.K.) ) chapter in her community:

Sara Lincoln suffers when she hears her adopted child cry. The baby was born addicted to crack cocaine because the child's birth mother used the drug while pregnant. Now Lincoln plans to adopt another child soon to be born to the same woman. The child will also be a crack baby. While Lincoln and her husband work to terminate the birth mother's parental rights, the children caught in the middle suffer the symptoms of being born addicted to drugs. Lincoln decided that the best thing to do is start a Connecticut chapter of Project Prevention, a controversial group that pays drug addicts up to $300 to use longterm birth control or get sterilized. Project Prevention has touched off an ethical firestorm everywhere it's gone, and Connecticut should prove no different.

The claim is that Project Prevention is unethical because it too close to eugenics, that it coerces addicts into giving up their reproductive choices because of an undue financial incentive, that it is paternalistic. But I'm having a hard time buying into these arguments, especially since there doesn't seem to be qualitative or quantative data that the addicts who sign up for this program (Barbara Harris said Project Prevention has served nearly 2,000 "clients." ) have regretted their actions. Does these women feel coerced? Or do they feel a sense of relief? And what of the ethics of public health, that we all pay when our children suffer?

Breast Cancer Treatment and Evidence Based Medicine

A fellow Blogger, Daniel Goldberg J.D., from medical humanites blog, has written a piece which is pertinent to us and he has given me persmission to it quote here. Thanks Daniel.
http://www.medhumanities.org/2006/12/on_evidencebase.html

[Last Thursday] came the news of a precipitous drop in the breast cancer rate in the U.S. Todd Ackerman, one of the Houston Chronicle's fine medical journalists, reports: The most significant decline ever recorded in U.S. breast cancer rates may have been the result of millions of older women stopping hormone replacement therapy, according to a new analysis.

Researchers at the University of Texas M.D. Anderson Cancer Center revealed Thursday that the rate dropped 7 percent in 2003 and suggested a striking reason: women's abandonment of menopause hormones after a large study was stopped the year before because the pills were increasing health risks.

To be frank, this makes me feel a bit like Marvin the Martian (.wav file), and it has everything to do with evidence-based medicine. EBM, as it is often called, is roughly defined as "the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patient."

My own reaction, as well as a common reaction of laypersons when they hear this definition, was something along the lines of, 'What do you mean? What else have physicians been doing?' I have personally been writing and thinking a great deal about EBM in the last month, and …I will not, therefore, go into too much detail about the controversy over EBM, but suffice it to say that while I think that awareness of some of the practical problems and pitfalls of EBM is merited, I also think such problems do not negate the conceptual importance of EBM, and that avoiding any commitment to engage the problems of EBM can result in dire consequences.

Jay Katz documents some of these consequences in the course of breast cancer treatment in the 20th century, but the saga of hormone replacement therapy ("HRT") is another sad piece of the puzzle. From my own research, I found that in 2000, physicians issued over 45 million prescriptions for the most common HRT, in the staunch belief that HRT would help prevent a range of diseases for postmenopausal women (including cancer and coronary disease).

Such beliefs -- in terms of outcomes and efficacy -- had not been confirmed via rigorous scientific studies. When such a study was finally done by the Women's Health Initiative, the "unexpected" findings were that HRT actually seemed to increase the risk of certain kinds of invasive breast cancers. In fact, the study was halted on the recommendation of the data safety and monitoring board because it appeared to be doing more harm than good.

Thus, providers had issued prescriptions for HRT for millions of women in the belief that it might help reduce the risk of certain kinds of cancer, which belief had simply not been confirmed by the best kinds of evidence (which are not randomized controlled trials in every instance).

And now we hear the news that the most plausible single factor explaining the highly statistically significant drop of 7% in the 2003 U.S. breast cancer rate is the fact that providers ceased writing the prescriptions and women stopped taking them.

Please do not misunderstand this post as an attack on physicians or providers.

I both understand and agree that there is immense value to a physician's practical experience, training, and intuition. But I think that such sources of knowledge, unaccompanied by the best evidence (quantitative and qualitative) can be exceedingly dangerous when used as the sole criteria for assessment of an intervention. Often, there is simply no way to know if a given intervention will be therapeutic or not. It's not the uncertainty that is the problem, IMO; it's the willingness to plow ahead, to avoid incorporating that uncertainty into clinical practice, that concerns me.

Anyway, I obviously have a great deal more to say about this topic in general, and what I have said here about EBM is merely the tip of a very important iceberg. But I do think the news about HRT is an important theme in the overall discourse, and I wanted to mention it.(You can find a short piece I wrote on EBM and the recent news involving stents here (.pdf), and you can find an article on another sad chapter in the breast cancer saga here, which I wrote before I had ever heard of EBM, but which fits in pretty obviously with some of the points I am concerned with here).

I can also recommend some excellent sources on ethics, policy, and EBM, so if anyone is interested please feel free to email me. mhweblog@gmail.com

Who's Your Daddy?

18 year old Katrina Clark writes a compelling article about life as a child whose father was an anonymous sperm donor in the Washington Post's Outlook section today:

....I was angry at the idea that where donor conception is concerned, everyone focuses on the "parents" -- the adults who can make choices about their own lives. The recipient gets sympathy for wanting to have a child. The donor gets a guarantee of anonymity and absolution from any responsibility for the offspring of his "donation." As long as these adults are happy, then donor conception is a success, right?

Not so. The children born of these transactions are people, too. Those of us in the first documented generation of donor babies -- conceived in the late 1980s and early '90s, when sperm banks became more common and donor insemination began to flourish -- are coming of age, and we have something to say...

For the whole article, click here.

Defibrillators Disrupt Peaceful Dying

Cardiac defibrillator implants -- small, internal versions of the paddles that emergency rooms use to shock patients' malfunctioning hearts -- are saving many lives. But in some cases they also are making the act of dying harder, forcing terminally ill patients and families to make wrenching decisions about turning them off. The devices subject some dying patients to painful jolts and can prolong suffering, traumatizing loved ones as the devices fire fruitlessly.

More from the Washington Post article here.

IVF Risky to Mom and Babes

High-dose fertility drugs put mothers and babies at risk, according to two studies discussed at a conference in London last week. The studies indicate that women who receive high doses of drugs to stimulate their ovaries into producing lots of eggs - so that the best possible ones can be picked once the egg has been fertilised by sperm in the laboratory - are more likely to produce embryos with genetic defects and suffer harmful changes to their womb lining.

Most embryos will never develop into babies because the defects make it impossible for them to survive when they are implanted back into the womb. But the discovery explains why so many fertility treatments fail, with thousands of women going through several expensive and painful cycles of treatment in the hope of having a child. It will add to worries that some genetic changes may occur in the children which are not yet being picked up by doctors.

For more, click here.

Circumcision Study Cut Short

In the NY Times this morning: Circumcision appears to reduce a man’s risk of contracting AIDS from heterosexual sex by half, United States government health officials said yesterday, and the directors of the two largest funds for fighting the disease said they would consider paying for circumcisions in high-risk countries.
The announcement was made by officials of the National Institutes of Health as they halted two clinical trials, in Kenya and Uganda, on the ground that not offering circumcision to all the men taking part would be unethical. The success of the trials confirmed a study done last year in South Africa.
AIDS experts immediately hailed the finding...Uncircumcised men are thought to be more susceptible because the underside of the foreskin is rich in Langerhans cells, sentinel cells of the immune system, which attach easily to the human immunodeficiency virus, which causes AIDS. The foreskin also often suffers small tears during intercourse. But experts also cautioned that circumcision is no cure-all. It only lessens the chances that a man will catch the virus; it is expensive compared to condoms, abstinence or other methods; and the surgery has serious risks if performed by folk healers using dirty blades, as often happens in rural Africa. To read on, click here.

The Top 10 health stories of 2006

Harvard Health Letter has come out with what they see as the top 10 health stories of the year:

1. A new shot in the arm against cancer. The newly approved HPV vaccine represents a different approach to fighting cancer. Instead of just screening patients to spot cancer early, doctors can use this vaccine to actively prevent it.
2. Trans is fat non grata. This year it became easier to avoid trans fats after the FDA required food manufacturers to list trans fat content in the Nutrition Facts portion of food labels, the first major change to the label in over a decade..
3. Has Massachusetts figured it out? Massachusetts adopted the most promising plan yet for universal health insurance coverage.
4. New treatment for macular degeneration. A promising new approach focuses on angiogenesis, or the formation of blood vessels. The FDA approved Lucentis, an anti-angiogenic drug aimed at the blood vessels that cause wet macular degeneration, a leading cause of blindness.
5. Germ warfare—and the germs are winning some battles. Antibiotic-resistant “superbugs” are causing more trouble than ever. Virulent strains of bacteria such as methicillin-resistant Staphylococcus aureus (MRSA) and Clostridium difficile, once seen only in hospital settings, are now circulating in communities.
6. Vaccines, kid stuff no more. “Getting your shots” is becoming a bigger part of adult preventive medicine. In 2006, the FDA approved Zostavax, the first vaccine against shingles, a condition that typically affects people over age 60.
7. Drug approvals—with strings attached. The FDA allowed the multiple sclerosis drug Tysabri back on the market, with careful restrictions to ensure patients are closely monitored.
8. Bird flu preparations: Don’t chicken out now. The disease continues to smolder, vaccine development inches forward, and the public and the press are showing signs of bird flu fatigue. Still, preparation is time and money well spent, because a pandemic could be horrific.
9. Calls for FDA reform getting louder and clearer. The Institute of Medicine released a report calling for two dozen reforms. One major theme: The approval process will never ferret out all the problems with a drug, so the agency needs tough, new powers to better monitor drugs after they are on the market.
10. D: Finally, a vitamin makes the grade. Several new studies suggest that the so-called sunshine vitamin (because it’s produced in skin exposed to sunlight) may protect against cancer.

To read on, click here (free subscription).

Taking Reproductive Technology Too Far

A few days ago an article entitled, “Wanting Babies Like Themselves, Some Parents Choose Genetic Defects” was published in the NY Times. It described a growing trend in assisted reproductive technology. Preimplantation genetic diagnosis, (PGD) is a process where embryos are created in a test tube and then their DNA is analyzed for any abnormalities, specifically hereditary diseases such as Huntington’s disease, prior to being implanted in the uterus. The unpredicted interpretation of the procedure is parents choosing abnormalities, such as deafness or dwarfism.

While reading the article I was struck by obvious ethical conflicts. The first is the principle of non-malificence, or a doctor’s obligation to do no harm. Is intentionally creating a child with a significant physical disability violating this principle? Yes. The individuals involved would be writing the child’s life story for them, and setting them up for a life of pain and struggling. The article quotes Dr. Robert J. Stillman who reminds us all that “one of the prime dictates of parenting is to make a better world for our children.” One cannot forget the responsibility of the parent and their obligation to do what is in the best interest of their child. Is the “deliberate crippling” of these children the way to do that? I say no.

The second major issue that stuck out to me was the idea of the child’s rights. A lesbian couple, both of which are deaf, was referred to in the article. They decided that the best child for them would be a child with deafness, so they searched for a deaf sperm donor to increase their chances. They were successful and their son was born mostly deaf. They then selected to not give him hearing aids. This is absurd! They are denying their child the right to hear. They have withheld opportunity and ability. The medical community or social society should not support such behavior. The precedent being set by such actions is very dangerous.

Numerous case examples brought up in the article were scenarios of parents choosing a dwarfism gene, and saying that having a child with dwarfism, like themselves, would be “a blessing” and they could not imagine what life would be like if their average height child had to deal with little parents. But I think that the meaning of that claim is coming from a different place. I think that what many parents are probably thinking is “what is my life going to be like when she is different from me?”

I have a strong belief that much of the use of the new reproductive technology comes from a selfish place in parents. The title of this article is pitch-perfect, “Wanting Babies Like Themselves…” In choosing genetic defects for their children, parents are manipulating the PGD process and taking the preventative intention out of this technology. As Dr. Yury Verlinsky states, “If we make a diagnostic tool, the purpose is to avoid disease.” People need to be cautious to not take advantage of biotechnology, take care in their decision-making, and beware of shortsightedness.

[written by kmcmanamy, a University of Vermont student -- thanks, Casey!]

International Force... Feeding

Newspapers across Europe and the U.S. reported yesterday that high-profile prisoner Vojislav Seselj, held on charges of war crimes, would be force-fed if his condition continued to deteriorate. Seselj is nearly three weeks into his proposed hunger-strike, protesting conditions instituted by The Hague which include limited visitation rights by his wife and family.

Seselj is being held on charges of conspiratorial acts promoting ethnic cleansing and the expulsion of all non-Serbian peoples from the Balkan territories under their control in the early 1990’s.

The spokesman for the UN War Crimes Tribunal announced yesterday that there was “grave concern” for the health of the prisoner, and that if necessary, they were prepared to take steps in order to intervene.

A statement issued by the tribunal and quoted in BBC’s December 6th article, clarifies: "The trial chamber ordered the authorities of the Kingdom of the Netherlands to provide medical services - which may in the case of medical necessity include intervention such as drip-feeding - with the aim of protecting the health and welfare of the accused and avoiding loss of life." (http://news.bbc.co.uk/2/hi/europe/6214862.stm)

The issue, however, is a bit stickier than the statement seems to imply. Similar issues have been under public watch recently- in the case of prisoners at Guantanamo, the United Nations stood to uphold the rights of those on hunger strike, essentially proclaiming force-feeding unethical and a violation of international law. Further, if the hunger-striker is deemed able minded at the time of statement, he or she can refuse future medical treatment even it is the final avenue to saving his or her life.

This last bit is especially conspicuous here, as it has also been reported that just before Seselj’s transfer to a hospital Wednesday, he issued a handwritten statement explicitly rejecting all medical treatment.

Seselj’s supporters from the Serbian Radical Party (SRS), an organization he leads and to which he has recently been reelected in his absence, claim the tribunal is acting irresponsibly. One article quotes a spokesman for the SRS, “Seselj has grave kidney problems and we're seriously concerned for his life.” Among the party there is popular demand for the leader to be moved closer to home; to a hospital in Belgrade.

In 1991, the World Medical Association issued their “Declaration of Malta,” a detailed statement essentially banishing the practice of force-feeding under distinct circumstances. A link to the form can be found on Amnesty International’s website: http://web.amnesty.org/pages/health-ethicswmahs-eng

Essentially, the declaration puts the desire of the hunger-striker first, although in rather runny, ambiguous terms to my eye. One section of the preamble, however, does seem abundantly clear.
It states, “The ultimate decision on intervention or non-intervention should be left with the individual doctor without the intervention of third parties whose primary interest is not the patient's welfare. However, the doctor should clearly state to the patient whether or not he is able to accept the patient's decision to refuse treatment or, in case of coma, artificial feeding, thereby risking death. If the doctor cannot accept the patient's decision to refuse such aid, the patient would then be entitled to be attended by another physician.” (reference link above)

Without little relevant working knowledge of international law and the procedures recognized or followed by The Hague, I feel I can’t draw any definitive lines on the proper course to follow in the case of the striking Seselj, but am obliged to allow the referenced information speak for itself.
It will be interesting indeed to see what type of example The Hague chooses to set next.

The Hague Declaration on the Human Rights and Dignity of Dalit Women

The Dalits, a caste of around 260 million people in South Asia (accounting for roughly 1/4 of India’s population), are facing systemic and structural discrimination in the region due to their inferior social status. The Dalits are perceived as “untouchable”/inferior beings therefore are subjected to a life of poverty and discrimination by the higher-ranking castes. Women are especially discriminated against, even within their own caste, as there are defined as intrinsically impure beings. Dalit women are forced to perform the most degrading jobs, denied access to education and are subjected to violence, including the “Devadasi system” of forced and ritualized prostitution. Dalit women are basically stripped of all their basic human rights, having no recourse against the men perpetuating these abuses and inequalities.

Despite the intense gendered based caste discrimination, the Dalit women have collectively participated in resistance movements trying to change this unfair system and have been actively appealing for help from the international community. Several international treaties (ICCPR, ICESCR, ICERD and CEDAW) could be used in international bodies to persuade the South Asian governments to pass and enforce laws that protect Dalit women’s human rights and offer them equal rights with men. Furthermore, 180 countries accepted the Millennium Development Goals (MDG) and the removal of social inequalities (i.e. reduce poverty, offer access to education, ensure gender equality etc.) impacting Dalit women (which account for 2% of the world population) represents a necessary step towards the realization of these goals.

The discrimination against Dalit women is an issue that has been brought in front of international bodies as early as 1995, culminating with the drafting of the Hague Declaration on the Human Rights and Dignity of Dalit Women which occurred at the Hague Conference on Dalit Women's Rights, in November 2006. The Hague conference also resulted in several recommendations being made to the governments of India, Pakistan, Bangladesh and Sri Lanka to correct the injustices made towards Dalits. These measures were meant to counter the widespread discrimination and violence against Dalit women, not only by pressuring governments to pass the appropriate laws, but also making sure that these governments take all necessary measures to enforce the rules and protect the Dalit women’s basic human rights. There rights range from parliamentary representation, property rights, antidiscrimination, anti-violence rules, right to education and equal protection under the law. The goal of the Hague Conference was to involve international bodies (such as the UN, EU and other multi-national NGOs) to build support for Dalit women to achieve these basic rights by 2015. This was viewed as a necessary step in order to achieve the targets of the MDG and close the wide social gap for this discriminated group. Read more:

Blood Diamonds Are For Never

One of things I love about teaching is that I learn new things all the time from my students -- for example, two of my students recently read the book Blood Diamonds: Tracing the Deadly Path of the World´s Most Precious Stones and noted that there was connection between the diamond industry and AIDS:

During the 19th century in South Africa a growing demand for labor occurred as a result of the discovery of diamonds and gold. A need for men to work the mines created a basis of cheap labor, where the worker's families would remain in rural areas and their wages were sent home. This was an appealing labor system for both the employers and the state. The long-term separation of migrant men from their wives and families, along with the ever-present dangers of mining work and other high-risk, low-paid jobs, helped foster aggressive masculinities and sexualities among migrant laborers. These in turn have contributed massively to the rapid spread of HIV/AIDS. Both the need for multiple partners and a desire for flesh-to-flesh contact played a massive role in the spread of HIV in South Africa. These actions were seen as a normal mechanism to cope with life on the mines. Another contributor to the HIV/AIDS epidemic was the prevalence of sexually transmitted infections. Syphilis was one STI which was found at a high rate in the urban and rural areas of black South Africa. Individuals infected with STIs are proven to be much more susceptible to HIV/AIDS contraction. While their husbands were off working on the mines, wives left at home were often forced to have relations with multiple sex partners in exchange for groceries and clothing. Another factor which contributed to the rise of this epidemic was homosexual relations between men on the mines. After the men had multiple sexual relations with urban women, many of them were getting sick, especially with syphilis. This led the men to perceive the urban women as 'unclean' and they began to satisfy their sexual needs with each other, as a safer alternative. Many miners were married to other men on the mines, proving that this was an ongoing issue. This cultural practice was seen as an attempt to curb the spread of STIs and HIV. These are just a few of the reasons why the mining of diamonds in South Africa, has contributed greatly to the huge epidemic of AIDS.

Sounds like another good reason to stick to cubic zirconia....




[Addendum December 8, 2006 -- the movie Blood Diamonds with Leonardo DiCaprio and Jennifer Connelly has just come out, providing yet more reasons to think twice about supporting an industry that, in the past, has contributed to miserable living conditions and has yet (as far as I know) to act on alleviating those conditions it helped set up.]

Using PGD to select for disability

In IVF procedures, preimplantation genetic diagnosis (PGD) is generally used to help prospective parents bear healthy children. Genetic testing performed on embryos can identify serious disabilities or diseases such as cystic fibrosis and Tay-Sachs disease, and these embryos are not selected for implantation in the woman's uterus.

The Science and Health section of today's NYT has this article about a new use for PGD: parents--who may not be infertile--using the procedure to select "for" a particular condition. A new article in the journal Fertility & Sterility presents the first actual data I've heard about on this issue. According to a study performed by the Genetics and Public Policy Center at Johns Hopkins, 3% of infertility clinics surveyed reported that they had intentionally used PGD to identify and implant embryos with a particular disability. (In press: Baruch S, Kaufman D, Hudson KL. Genetic testing of embryos: practices and perspectives of US IVF clinics. Fertil Steril 2006)

A lot has been written about whether PGD (and prenatal testing) to avoid the birth of people with disabilities is ethical--eliminating the disability by eliminating embryos. Adrienne Asch and David Wasserman offer the best (to my mind) argument for this view in a book chapter called "Where Is the Sin in Synecdoche?" (chapter 7 in Quality of Life and Human Difference: Genetic Testing, Health Care, and Disability).

In the present case, however, the closest parallel I can think of in the bioethics literature is the controversy about whether it is morally acceptable for Deaf parents, who see deafness as a necessary ticket to enter the Deaf culture, to decide against cochlear implants for their children. You can read more here, here, here, and here.

Lots of important questions here about disability, about what parents owe their children, about what's best for children, and about parental rights and how much say society should have over these questions.

Another View on Palliative Sedation

After reading the post written by aeb, I have added my own beliefs on the topic of palliative sedation. Aeb and I are currently taking a nursing course on topics that arise when end of life is near, and palliative sedation is a topic that we have discussed in great detail.

Palliative sedation is the use of sedative medications to relieve extreme suffering that cannot be diminished with any other form of medication or treatment. These symptoms are also known as refractory symptoms. Palliative sedation puts people in an unconscious state while the disease takes its course, eventually leading to death. There has been, and still continues to be excellent interventions in our health care system for palliative care; however people are still dieing with extreme suffering. Palliative sedation is a way to help these people die in a more comfortable way. If a patient is not capable of making their own decisions and has no advanced directives, a health care surrogate can make the decision to introduce palliative sedation based on what he or she thinks the patient may have wanted. There is much to consider when discussing palliative sedation, but if a patient has a terminal illness, has extreme suffering, and no other methods to relieve either physical, emotional, or spiritual pain are working, why not do something that will ultimately put an end to this suffering?

Suffering is subjective, and many people seem to forget about the emotional factors that arise when death is imminent. A dieing patient may have extreme anxiety about leaving behind loved ones, unfinished business, or many other various factors that create extreme anxiety while dieing. Why should these feelings be any less important than physical pain, difficulty breathing, or nausea? It's unfortunate that some physicians feel emotional difficulties are not an appropriate reason to use palliative sedation. Why not do the most possible to create the most comfort? If palliative sedation is the only thing left to try then what else is there left to loose?

Palliative sedation also comes down to autonomy; in that the patient has the right to make his or her own decisions regarding the care they receive. What makes this difficult is that clinicians are not obligated to provide care that violates his or her values and morals. On the other hand, clinicians need to provide care that benefits and promotes the patients well-being. If they refuse to use palliative sedation and nothing else is providing relief from suffering, are they promoting the well-being of that patient? They are obligated to do good and prevent the patient from harm, but what is causing harm is subjective and many clinicians have an issue with making decisions based on subjective information. Our health care system has always said that pain is whatever the patient says it is, so why should palliative sedation fall into different circumstances?

Palliative sedation has recently begun to be used more frequently. Patients are finally dieing comfortably either in their own homes or the hospital setting. Many people have thought of palliative sedation as being the same as physician assisted suicide; I just wanted to point out that there is a difference. Palliative sedation is not using a medication that will immediately end a life; it is putting a person in a state of mind so that they are unaware of their extreme suffering. It is not helping to "fix" the disease or illness, but promoting comfort so the patient can be free of pain and die peacefully. Isn't that all of our hopes, to die peacefully? When a terminally ill patient is at the end of life, palliative sedation is a good alternative to other medications and treatments that are not relieving pain and suffering that come with death.

What's Wrong with this Picture?

A series of articles in the NY Times looks at how family practitioners and emergency room physicians have also jumped over into the cosmetic treatment business because the money is so much better. The message seems to be that being rich isn't enough anymore -- the rich envy the super rich (as one of the editorial notes, " It’s hard for people flying in coach to have much patience with those in first class bemoaning their lack of a personal jet."). But we do need to worry about the effects on society as a whole when members of the educated elite think they are grossly underpaid. The more they feel as if they are losing ground against their peers, the more likely they are to ditch professions in which the pay is only good — like delivering babies — in favor of less useful careers in which the compensation is off the charts — like eliminating lines from wealthy people’s foreheads.

Palliative Sedation

Before taking one of my most recent nursing classes, I had not been exposed to the concept of palliative sedation. Throughout this class I have been exposed to articles which helped me to understand what palliative sedation really is. I have found many people also do not know what it is or why it would be used. I think it is important for people with friends or family members who are suffering to have an understanding of what palliative sedation is, so they are more capable of making decisions surrounding end of life care.
Palliative sedation is used done with the intent to relieve subjective and objective symptoms. Objective symptoms are those which we can see, such as crying or a pain rating of 10/10. Subjective symptoms we can not see, we can only believe what the patient is telling us. Emotional suffering is often missed because physicians have a hard time sedating a patient based merely on what they are telling you. People remain in anguish due to physicians personal struggle of knowing who is really suffering from those who just want to be sedated as an escape or to hasten their death. As a nurse and as a family member it is really important to advocate for the person who is suffering. We are the ones who know the people best and are able to validate the patients emotional suffering.
Nurses can struggle with palliative sedation because it can hasten death. The reason palliative sedation is ethically ok is due to the intent one has while administering it. The nurse must remember their intension is to promote comfort, but with that death may occur. In order for nurses to continue on and maintain their own stability, they have to remember someone always has to give the last dose of a drug, and they need to remember the good they did for the patient. If a patient dies shortly after a dose of medication you gave, you did not kill them, you simply gave the last dose and the person died because they were ready for one reason or another. Nurses who maintain this sedation for patients are relieving them of suffering and unbearable pain. Doing this for them is not only what the patient wants, but it also restores quality into their life.
Families need to understand the same things that nurses do. They need to know the intention is to relieve pain, which can not be relieved by any other method. Families should be comforted by knowing palliative sedation is freeing the patient of pain.
With this bit of information on palliative sedation, I hope people are more aware and have a better understanding of what it is and how it is useful to patients. This knowledge should be used to free caregivers of the burden they may feel from administering it. This should also free family members of any burden they may feel by choosing to have someone close to them sedated. No one wants to suffer and thanks to palliative sedation no one has to.

Today is World AIDS Day

Today is World AIDS Day, marking 25 years of HIV/AIDS awareness. The number of people living with HIV continues to rise worldwide--in part because of new therapies that can delay the onset of AIDS--but the disease continues to spread.

Women bear a disproportionate share of the burden of this disease. According to UN figures, more adult women than ever before are now living with HIV. The 17.7 million women living with HIV in 2006 represent an increase of over one million compared with 2004. These numbers don't account for uninfected women who are the primary caregivers for loved ones with AIDS: their lives, too, are deeply affected by the disease.

This article in today's San Francisco Chronicle describes a Bay Area response to the "epidemic" (CDC's term) of HIV/AIDS in the African American community.

Here are resources and info about women and HIV/AIDS:
UNIFEM's resources on gender and AIDS
The Global Coalition on Women and AIDS (UNAIDS)
The Centers for Disease Control
AVERT, an international AIDS charity

Epidemics and Physician Responsibility

"In the Line of Duty: SARS and Physician Responsibility in Epidemics" - This article was published in Medical Ethics Vol 13 Issue 2 Spring 2006 (Lahey Clinic Medical Ethics) as an edited transcript of a forum at Harvard Medical School in December 2005.

The guest speaker was Dr. William Ho, Chief Executive of the Hong Kong Hospital Authority at the time of the SARS epidemic in Hong Kong. He described the disadvantages and advantages at hand in the public hospitals. A disadvantage was that individual rooms and beds were unavailable; patients and nurses were in close confines in more than a thousand beds. An advantage was that all forty public hospitals use a uniform technology system that allowed similar definitions for illnesses.

Dr. Ho described the beginnings of the SARS epidemic starting with a mysterious disease in Guongzhou in the winter of 2002 that had symptoms similar to an atypical pneumonia. This was common in hospitals, so pinpointing an epidemic was difficult. Experts began to handle any community cases of pneumonia, but it was not until the hospital outbreak that anyone was positive they were dealing with an epidemic. Soon after the WHO labeled it as SARS and it became a public emergency.

At the Prince of Wales Hospital, the staff split into two teams. Those infected were labeled as "dirty" and remained on the respiratory ward, those not infected or "clean" switched wards. As the infection spread, the number of patients at the hospital was becoming over-whelming. Questions arose whether to discharge patients or accept new patients because of fear they would become infected or infect others.

Outside the hospital, community infection was spreading rapidly. Patients returning to populated housing blocks were putting those in that area at high risk of becoming infected. This lead to an ethical decision of whether or not to quarintine residents in these infected areas and to have family and those in close contact to report to clinics daily. Should those patients too afraid to seek medical treatment be charged with criminal offenses? The government stepped in and evacuated buildings like this one, sending residents to camps while they disinfected homes. Only buildings of those infected were released; no names.

Walter Robinson, MD, MPH, an assistant professor of pediatrics and medical ethics at Harvard then went on to discuss the aspect of medical staff being obliged to stay in the hospital in times of a crisis. When the HIV virus came to the US, many doctors refused to treat infected patients although there was never a greater risk than those of other infectious diseases such as Hepatitis B. It was only the stigma associated with the disease that scared physicians and patients. A long debated resulted in the AMA council on Ethical and Judicial Affairs concluding in 1987 that "a physician may not ethically refuse treatment to a patient whose condition is within the physician's current realm of competence."

Robinson went on to point out whether or not physician's have a moral obligation to treat the sick we live and work with when health care is not universal. I believe that if an epidemic was to occur in the US today or in the future, physicians would rise above the call of duty and moral obligations. Ethically this would be the "right" thing to do, regardless of whether they risked the chance of receiving the infection or not. Besides, they could very well get it outside the hospital, so they may as well do the morally justified action.

Preconception Care? Treating women as eternally prepregnant

An article in today’s New York Times quotes public health experts who tell women that they ought to start thinking in terms of “preconception care” as opposed to prenatal care if they want healthy babies. The reasoning is that by the time women know they are pregnant, it is already be too late to avert birth defects: “For many women the most important doctor’s visit may be the one that takes place before a pregnancy is conceived.” Last May folks at the division of reproductive health at the Centers for Disease Control and Prevention (CDC), advised that women ought to be treated, and treat themselves, as if they were about to conceive a child. But women are to be assured that not ALL women ought to be treated thus, only those between their first menstrual period and up until menopause.

Family planning, child spacing and encouraging young people to develop a reproductive life plan is sound advice given that in the US half of all pregnancies are unplanned and preparing for a healthy pregnancy can require behavioral changes that may take months. But a policy whose goal is safe uterine environments ought not to be centered on warning women that they could get pregnant at any time in their reproductive life so they had better act as if pregnancy was imminent. Sexual relationship education, birth control access, STD care, battered women’s safe houses, environmental and occupational safety, etc. etc. etc. factor in when considering what makes for a healthy pregnancy.

Who or what are you thankful for this Thanksgiving?

With Thanksgiving coming up, I'm borrowing an idea from Beliefnet.com (my favorite spirituality site) -- please tell us who or what you are thankful for this Thanksgiving? Send me your thoughts at linda (at) biomedlaw.com and I'll be happy to post them for you or just enter a comment on this side --

I'll start: I am thankful for my colleagues at the Women's Bioethics Project, especially Kathryn Hinsch, for creating for forum and supportive atmosphere in which we can explore and discuss issues in women's bioethics -- and for bringing a incredible passion and enthusiasm to the field!

Happy Thanksgiving everyone!


[ From DeLila Bergan:
I'm thankful for my family and for their love and support, for their relatively good health, for our ability to pay the bills and put Thanksgiving dinner on the table, and for the opportunities we have been given to enjoy and to contribute in life. I'm thankful for the beautiful weather we're anticipating here for the holiday. On a more mundane note, I'm thankful for the appearance of apolitical shift that, should it continue in 2008, may permit us to make progress on issues of health care and social justice.]

Domestic Violence and Health Care

Women are less likely than men to be victims of violent crimes, but they are five to eight times more likely to be victimized by an intimate partner. A quarter to half of women around the world have suffered violence from an intimate partner, according the UNICEF’s report The Progress of Nations, 1997. Estimates range from 960,000 incidents of violence against a current or former spouse, boyfriend, or girlfriend per year, to 3.9 million women raped, and or physically assaulted, by an intimate partner per year. A 1998 Commonwealth Fun survey found that nearly 31% of American women report being physically or sexually abused by their husbands or boyfriends at some point in their lives. 30% of Americans say they know a woman who has been physically abused by her husband or boyfriend in the past year. The U.S. Department of Justice reported that 37% of women who were admitted to a hospital ER for violence related injuries were injured by a current or former spouse, boyfriend, or girlfriend.

The injuries are severe. Out of 218 women who came to an ER with injuries due to domestic violence 28% required admission, 13% required major treatment, and 40% had previous required medical care due to abuse. Besides the injuries sustained during abuse, physical and psychological abuse is linked to arthritis, chronic neck or back pain, migraines, stammering, problems seeing, sexually transmitted infections, chronic pelvic pain, stomach ulcers, spastic colon, and frequent indigestion, diarrhea, or constipation. 56% of women who have been abused are diagnose with a psychiatric disorder, 29% of all women who have attempted suicide were abused, 37% of abused women have depression, and 46% have anxiety disorders.

Children who have witnessed domestic violence are more likely to attempt suicide, abuse drugs and alcohol, run away from home, engage in teenage prostitution, and commit sexual assault crimes. 56% of men who abuse their wives frequently also assault their children. About $1,633 is spent for medical services provided to abused women, children, and older people per person per year, according to a study conducted at Rush Medical Center in Chicago. This amounts to a national cost of $857.3 million.

Domestic violence is hard to identify. Almost 92% of women who were physically abused did not discuss it with their physicians and about 57% did not discuss it with anyone. The Journal of the American Association found in 1999 that 10% of physicians screen new patients for intimate partner abuse, and 90% routinely screen during checkups. Accoridng to a survey 240,000 pregnant women, (about 6% of all pregnant women in the U.S.), are abused by men in their lives. Complications of pregnancy, including low weight gain, anemia, infections, first and second trimester bleeding, depression, suicide attempts, tobacco, alcohol, and drug use are significantly higher for abused women. Read more:

World Power: The Effect of Literacy on Health Outcomes

This article written by Susan Kendig, RNC, MSN, WHCNP, FAANP examines the relationship between the literacy of patients and their individual health outcomes. Kendig brings up the point that today, many Americans are "medically illiterate." In 1992 the National Adult Literacy Survery displayed results of a study, which showed that 40-44 million adults in America were reading at or below a 5th grade level. In addition to that, another 50 million Americans were classified as having marginal literacy skills. This meant that although able to read simple text, they were unable to understand lengthy, complex documents. Kendig chose to specifically look at women and illiteracy in the health care system. One specific case Kendig presents is of a woman who was sent by her gynecologist to a surgeon to have a problem "easily" fixed. After signing numerous consent forms and completing the surgery, the patient was informed at her post-op appointment that her uterus had been removed (Cordell, 2005). Another study conducted in 2004 showed results of female medicare recipients with lower literacy rates were at a higher risk of not having been exposed to a pap smear or a mamogram in over two years (DeWalt, Berkman, Sheridan, Lohr, and Pignone 2004). Other studies were conducted at numerous hospitals showing high percentages of patients who were unable to comprehend the instructions "take on an empty stomach." Simply directions such as these, seem to come easily to people for the most part. Unfortunatly, with an increasing elderly, unemployed, poverous, and muliticultural population the "medical illeteracy" rates are increasing at alarming rates. Kendig stresses little ways medical staff can help these patients when it comes to understanding and following through with medical instructions. It is sad that America has gotten to the point, where they can produce thousands of drugs which will save people's lives, yet these very people cannot read and understand the very means of administering these drugs. Hopefully, in the future America will be able to better provide medical information and education to those in most need of it. As for now, the medical world is responsible for helping these patients in order to increase patient health outcomes, which will lead to a better prognosis for most.

The Pro-Roe, Anti-Abortion, Pro-Contraception Crowd Speaks Up

E.J. Dionne, Jr. of the Washington Post writes about the search for middle ground on the abortion issue:
A group of 23 pro-choice and pro-life Democratic House members have introduced what they called the Reducing the Need for Abortion and Supporting Parents Act - an initiative that will work to reduce the number of abortions in America by both preventing unintended pregnancies and supporting pregnant women and new parents. This bill would enable pro-life and pro-choice advocates to find common ground -- It includes a remarkably broad set of programs aimed at reducing teen pregnancy, promoting contraception and encouraging parental responsibility. But it also includes strong measures to offer new mothers full access to health coverage, child care and nutrition assistance.

The public debate usually ignores the fact that abortion rates are closely tied to income. As the Guttmacher Institute has reported, "the abortion rate among women living below the federal poverty level . . . is more than four times that of women above 300 percent of the poverty level." The numbers are stark: 44 abortions per 1,000 women in the lower income group, 10 abortions per 1,000 women in the higher income group.

In other words: If you truly care about reducing the number of abortions, you have to care about the well-being of poor women.

There are moral and practical reasons for members of both parties, and combatants on both sides of the abortion question, to embrace this approach.

To read on click here.

Genetics & Health Interview

I'm plugging my own interview here, but hopefully also plugging the Genetics & Health website, which is always informative and engaging.

http://www.geneticsandhealth.com/2006/11/16/genetics-interview-25-dr-emilie-w-clemmens-of-the-womens-bioethics-project/

New Drug Boosts Breast Cancer Survival

In an article in The Lancet, German researchers report that certain breast cancer patients who switch to the aromatase inhibitor drug anastrozole (Arimidex) after two to three years of treatment with tamoxifen live longer and are more likely to remain cancer-free. More from the Washington Post.

Breast Implant Ban Lifted

Despite lingering safety concerns from some health advocates, the Food and Drug Associaton (FDA) lifted the ban on cosmetic use of silicone breast implants yesterday.

Despite testimony by Dr. Diana Zuckerman, President of National Research Center for Women & Families on the health risks associated with silicone breast implants and despite calls by Dr. Sidney Wolfe, chief of Public Citizen’s Health Research Group, to start a criminal investigation into Mentor Corporation's apparent failure to send the FDA data showing safety problems with their silicone gel implants, Dr. Daniel G. Schultz, director of the F.D.A.’s Center for Devices and Radiological Health, said that the agency’s review, had determined that their sale is in the best interest of women.

However, the FDA is requiring that manufacturers tell women that the implants "are not lifetime devices" and that most recipients will need at least one additional surgery to remove or replace their implants. The agency is requiring the makers, Mentor Corp. and Allergan Inc., to conduct an extensive study of at least 40,000 implant recipients over the next decade and provide their findings to the government. To read on, click here.

Editor's note [added Nov. 21, 2006]: This NY Times editorial explains that just because the implants were approved means that they are not risk-free.

Genetic Destiny

HarperCollins Publishers is promoting a fake biotech company called Nextgencode (Tag line: “We own the genes. We control your destiny”).

The promotion includes a hyper-integrated online campaign comprising a fake Website, online videos and social networking to generate interest in Michael Crichton’s soon to be released book “Next.”

Given Crichton’s ability to quickly put his finger on the pulse of hot topics in popular science -The Andromeda Strain (about a scary virus), Jurassic Park (genetically engineered dinos) Prey (nanotech gone amuck) State of Fear (global warming = scientific conspiracy) etc, I think this book is likely to generate a great deal of interest in genetic engineering and questions of ethics.

The premise of the book seems to be that biotech companies are allowing us to control not only our genes but also our destiny. The main question that almost always underscores Crichton’s books, of course, is “Who controls whom?”

-Andie

Extreme Preemies -- Who decides?

Art Caplan does a provocative article on MSNBC online about how the recommendations in the UK to let extreme preemmies die go to far -- but that the US has also gone too far in the past, in the opposite direction:

Is it right to let extreme preemies die?

British council recommendation goes too far — but so does U.S. law

By Arthur Caplan, Ph.D.

MSNBC contributor

Updated: 7:31 p.m. ET Nov 15, 2006

Can you name the only group in the United States that is required by law to accept medical treatment? It is newborn babies.

In 1985 Congress amended the laws governing support for child abuse and neglect programs to mandate that all infants born in the United States receive medical care. No matter how sick or disabled, all newborns, according to what became known as the Baby Doe law, must be treated. That is what makes the just-issued report by the Nuffield Council on Bioethics in England so startling.

The council, a private organization whose reports are very influential in Britain, argues premature babies born before 22 weeks gestation should not be given treatment to prolong their lives. The council was not arguing for any form of active killing. Its view is that since only 1 percent of infants born between 22 and 23 weeks of age survive long enough to leave the hospital, starting aggressive treatment on babies born at 22 weeks or younger is wrong.

The report is already drawing support from many pediatricians and neonatologists. It also drew the support of religious leaders including the Church of England (Anglican) House of Bishops and the Catholic Bishops’ Conference of England and Wales. (rest of the article here)

The case Art is referring to is Bowen v American Hospital Association, 106 S Ct 2101 (1986) -- In a 5-3 decision, the U.S. Supreme Court struck down Reagan Administration regulations (based upon the 1973 Rehabilitation Act and known as the Baby Doe Regulations) which were intended to prevent discriminatory non-treatment of handicapped newborn infants.
A difficult case, the Bowen Court viewed these rules as unnecessary to protect the rights of disabled infants and as interfering with parental rights to consent or refuse treatment based on what they deemed to be in their infants’ best interest.The Court relied heavily upon the right of parents to refuse treatment for their children. (Stevens, Powell, Marshall, Blackmun, Burger for plurality with White, O’Connor, Brennan dissenting.)

Although the law was struck down as unconstitutional, the enactment of the laws had a powerful effect on the public and how newborns are treated -- and since then Congress has enacted and re-enacted them -- Art pointed to an article by Loretta Kopelman entitled: Are the 21-Year-Old Baby Doe Rules Misunderstood or Mistaken?

[Thanks, Art]

What Bioethics Needs: More Lawyers

This is not the beginning of some annoying joke - I mean it. Over the last year, I've been impressed with the critical insights attorneys bring to bioethical issues.

I also had a terrific experience with young law students at the University of Minnesota yesterday. Laurel Kilgour, a UM student and one of the founders of their bioethics student organization, asked me to speak to their fledgling group. Normally, I would not fly nearly four hours to speak to a student group (even on their dime) but since one of the inspirations for starting WBP came from the scholarly work of Dr. Susan Wolf, I felt a debt of gratitude and decided to accept the invitation. Dr. Wolf is founding director of UM's innovative joint degree program in Law, Health and the Life Sciences.

We had a terrific turnout. I was impressed that these first and second year law students were very interested in the policy implications raised by bioethical issues. They asked complex and compelling questions. Frankly, their passion was contagious and I hope many continue to nurture their interest in bioethics. I'll say it again: We need more lawyers in the field.

P.S. They were the most polite audience I have ever addressed - Minnesota nice!

Education Development Center wins NIH contract to develop high school bioethics curriculum

According to a press release that just went out a few hours ago,

The National Institutes of Health (NIH) has awarded a two-year contract to Education Development Center (EDC) to develop a curriculum in bioethics to be used in high school biology courses. The curriculum materials will be created as a supplement to biology textbooks and, when completed, will be made available free to schools across the country. The Office of Science Education and the Department of Clinical Bioethics at NIH awarded the contract.

EDC researchers will work with a team of ethicists, scientists and teachers to develop instructional materials on topics of social importance in the life sciences. These are likely to include such subjects as the nature of bioethics, clinical trials, vaccination, genetic enhancement and genetic screening. The goal of these materials is to have students begin to develop their thinking about ethics and to relate their learning in biology to real life issues.

You can read the full press quote here.

I admit, my first thought is "oh, working with ethicists? Who?" I do think that who is involved will determine my enthusiasm for the project as a whole, simply becuase it has the potential to be either very good, or a nightmare.

End of Life Issues - Are we really prepared?

"The Last Word on the Last Breath" by Jan Hoffman, The New York Times, Oct. 10, 2006

The article was quite interesting and sadly all too true. In today's world it seems that no one wishes to discuss death or dying until often it is too late. Healthcare personnel are often the ones who bear the burden of society's silence on the issue of death. It isn't until attention is brought to the subject by the media as in the Nancy Cruzan case do we find ourselves thinking, "Perhaps I should write a will or at least let my wishes be known regarding my own death." But how many of us really carry out our intentions and have a will or advance directives written. I don't know if it is fear of dying or really our excuse of "being too busy" or "I'm healthy, nothing is going to happen".

Whatever it is, by not putting our wishes down in writing, we are indeed putting the burden of resuscitative measures on our loved ones and our healthcare providers. I am just as guilty as another and have not drawn up a will or advance directives because until now I really never gave it much thought. I know my husband and I have communicated our wishes to each other, but we haven't put them in writing.

As mentioned in the article, CPR was designed for use in sudden cardiac arrest. It was seen as a tool which provides one a chance for survival. It is taught as part of the American Heart Associations "Chain of Survival." It indeed can be very effective for sudden cardiac arrest and may provide a "second chance" for someone. However, when a person is gravely ill and the outcome is bleak, is it truly worth a "second chance" if all that means is more suffering. I really don't believe so. We need to be able to say enough. Let's just keep my loved one comfortable for how ever much time they have left. Often the family is trying to deal with their loved ones' illness and may not be able to provide an answer regarding DNR or CPR issues. Both families and patients need time to deal with the idea of death. I remember Dr. Elisabeth Kulber-Ross's books on Death and Dying and the stages of death a person and family go through on their journey - denial, anger, bargaining, depression and finally acceptance. I believe that where a person or family is on their journey will have an impact on their decision or lack of decision regarding a DNR issues.

Sadly without POLST (Physician Orders for Life Sustaining Treatment), Advance Directives, Living Wills, etc., if you should have a cardiac arrest while hospitalized, you will receive the latest that medicine has to offer related to resuscitative measures. Healthcare providers have no choice but to respond because to not respond could mean an expensive malpractice lawsuit. Hence, individuals really need to rethink about their view of how to deal with a life threatening illness and not leave issues of "what to do if… happens" to their family or loved ones. As stated earlier, I haven't filled out any Advance Directives or Living Will or even made a will, but as I near the half century mark, I see the need to have an open conversation with my children and husband and put my wishes in writing. Because remember, without anything in writing, treatment will be given no matter what the outcome. I would rather die at home with my family at my side than in a hospital bed connected to machines.

Article can be viewed at http://www.nytimes.com/2006/10/10/health

The latest Word on Male Pregnancy

We've blogged about male pregnancy before, both here and there, but Stephen Colbert goes over-the-top in his appeal to those who opposed stem cell research to either put up or shut up:


http://www.comedycentral.com/motherload/index.jhtml?ml_video=78242

The Ethics and Potentials of Womb Transplants

I think it's pretty obvious that we're fans of The Daily Show and The Colbert Report around here (the AJOB blog folks are equally guilty). That said, I will note I've been working on this post for a few days, and the fact that Colbert mentioned artificial wombs on the show this evening is just him being a thief. Honest.

That disclaimer out of the way, a news story crossed my desk over the weekend, but didn't appear to get picked up by anyone. Several outlets, including the New York Post and Australia's Herald Sun reported that American doctors at New York Downtown Hospital had won approval from their in-house ethics committee to perform a womb transplant when an appropriate candidate is found. They apparently have a lot of potential donors lined up (hmm).

Dr. Del Priore (of the New York Downtown Hospital) doesn't appear to be too concerned about the fact that there's only been a single rhesus monkey transplant done, and the womb was removed after 20 hours. The human womb transplant done in 2000, in Saudi Arabia, ended with the womb being removed after two artificially generated menstrual cycles due to a blood clot. Although there are these very limited results, Del Priore thinks that it would not be essential to do further research before offering the procedure to women, saying that face transplant surgeries went ahead in without being tested in non-human primates first.

This seems really problematic to me, though. The only reason you would transplant a womb into someone would be for the potential to carry a pregnancy to term - shouldn't we make sure that a transplanted womb can stay within a body for longer than 20 hours, or three months, without complications? Shouldn't we verify that a transplanted womb can actually carry a pregnancy to term with no complications, before cautiously and optimistically offering this procedure to women?

Furthermore, anyone undergoing a transplant has to take immunosuppressant drugs for life. The several stories reporting on this have said that the idea is for the womb to be transplanted, the woman to carry a pregnancy to term, and then have the womb removed so that she can stop taking the immunosuppressant drugs.

The little bit of digging I did on immunosuppressant drugs and pregnancy suggests that you'd need to be taking the drugs for about two years before they were at a low enough level where pregnancy is feasible, so long as you avoid certain known teratogenic medications and under close medical supervision. Still, the long term effects of immunosuppressant drugs on pregnancies and on the resulting children is unknown - and it seems more than irresponsible to advertise hope and willingness to do the transplant with intent to allow pregnancy without knowing all of the possible risks and costs.

What effect will the pregnancy have on the transplanted womb? Will the graft "stick", or will the growth of the uterus over the course of the pregnancy run the risk of the graft separating? What about rejection potential? Will it go up, requiring more medication? And of course, what about the entire concept of a non-vital transplant? Is this really a quality of life issue, and does it matter if it is? Should everyone have the option of carrying their own child to term, or if something causes the necessity of removal of womb, should we encourage those women/couples to look towards adoption or surrogacy? And if we start allowing non-vital transplants, what'll be next?

Any which way, it seems like way too contentious a surgery to advertise in the media and suggest will happen within the next year or two, when a willing volunteer is found. A lot more research, and a lot more dialogue about the ethics of it, should be had before we move forward to make it a medical reality.

Pimp My Pride; More on the 'pimping' of medical students

A guest post by Alice Herb on topic we had blogged about before:

Medical students are a special concern to me so when I recently read Barron Lerner’s essay in The New York Times, I hoped to get a clue about what happens to medical students in the course of their education. Dr. Lerner, a physician and historian, described what he believes to be a vanishing form of teaching known as “pimping.” This peculiarly named practice is one where students are peppered with questions about diseases, patients, identification of vital organs, etc. while on patient rounds or attending surgeries. As Dr. Lerner pointed out, these practices, depending on the personality of the attending senior physician, can in fact be educational but can also be humiliating, embarrassing and undermining.

I first encounter future medical students when I interview them for admission. At that time, while admittedly trying to make a good impression, they are nonetheless brimming with enthusiasm, idealistic and eager to learn how they can best help the ill and infirm and in the process “make a difference.” They have all spent an inordinate amount of time volunteering both in medical settings and in their communities. Their energy seems boundless. Yet by the time they are in their fourth year of medical school, I find that too many of the students have become cynical, uninterested in the human side of medicine and reluctant to sit still for something as unimportant as bioethics. What has happened to them? Is this what we do to our best and brightest? What is it in the medical school environment that graduates doctors who have lost or turned off human instincts? If we are to fix our health care system we need to remember to nurture the softer, more compassionate traits of our practitioners.

[Thanks, Alice!]

Cognitive Liberty in an Age of Neurotechnology

Top Bioethicists. Physicians & Psychologists to speak at UN Panel to discuss "Cognitive Liberty in an Age of Neurotechnology"

Contact: Ana Lita (212) 687-3324 | AnaLita@iheu.org


IHEU - Appignani Center for Bioethics to host panel, Friday, Dec. 1, 2006

NEW YORK – On Friday, Dec. 1, 2006 a panel of leading bioethicists and physicians will discuss cognitive liberty at the United Nations, to be held on the 2nd floor of 777 UN Plaza in New York City, from 6:00 p.m. to 8:00 p.m.

Growing knowledge in the neurosciences, enhanced by exponential advances in pharmacology and neurotechnologies that monitor and manipulate the brain, is rapidly moving brain research and clinical applications beyond the scope of purely medical use.

These emerging neurotechnologies offer expanded intelligence, memory, and senses, giving us greater ability to understand and control our own minds. But they might also expand the avenues for possible coercion and invasion of mental privacy.

What, then, is the state of cognitive liberty today? What steps might be necessary to protect cognitive liberty, mental privacy and freedom of choice in light of these neurotechnologies?

Speakers include:

James Hughes Ph.D. is the author of Citizen Cyborg: Why Democratic Societies Must Respond to the Redesigned Human of the Future. Dr. Hughes teaches Health Policy at Trinity College in Hartford Connecticut, and serves as Trinity's Associate Director of Institutional Research and Planning. He is the Executive Director of the World Transhumanist Association and its affiliated Institute for Emerging Technologies. Dr. Hughes will moderate the panel. Home page: http://www.changesurfer.com/Hughes.html

Elizabeth Phelps Ph.D. is currently a Professor of Psychology and Neural Science at New York University. Her laboratory has earned widespread acclaim for its groundbreaking research on how the human brain processes emotion, particularly as it
relates to learning, memory and decision making. Dr. Phelps is the recipient of the 21st Century Scientist Award from the James S. McDonnell Foundation and a fellow of the American Association for the Advancement of Science. Home page: http://www.psych.nyu.edu/phelpslab/

John P. Morgan M.D. is a physician and professor of pharmacology at the City University of New York Medical School. Dr. Morgan has published approximately 100 articles, book chapters and books, largely focused on the clinical pharmacology of psychoactive drugs. His latest book, Marijuana Myths, Marijuana Facts (The Lindesmith Center, New York, 1997) reviews the latest
scientific and medical research and debunks the common marijuana myths.
Home page: http://www.norml.org/index.cfm?Group_ID=5831

Bradley Lewis MD, PhD teaches cultural studies at the Gallatin School at New York University, with affiliated appointments in the Department of Social and Cultural Analysis and the Department of Psychiatry. He is the author of numerous articles published in academic journals, is the cultural studies editor for The Journal of Medical Humanities, and author of Postpsychiatry: Theorizing Psychiatry, Prozac, and DSM.
Home Page: http://www.nyu.edu/gallatin/about/faculty-bios.html

The IHEU-Appignani Center for Bioethics promotes a human-centered approach to bioethical issues. For information, visit: www.iheu.org/bioethics.

Research that hangs on stem-cell politics

McGill scholar Abby Lippman speaks out in the Globe and Mail against the commercialization of women's eggs:

Your latest call for research cloning in Canada once again makes no mention of the serious concerns raised by the technique. Even if the promises by scientists and politicians of cures for patients and boosts to the economy were realizable, this approach to embryo stem cell research requires a continuous supply of fresh human eggs. To get these eggs, women must be given large doses of powerful hormones to hyper-stimulate the ovaries. This is not just uncomfortable, but potentially very risky.

Scientists have called research cloning a wildly inefficient process requiring hundreds of eggs to produce just a single clone. And to date, there have been no validated reports that this actually can happen.

The approach you urge is likely to mean paying women for eggs and the start of a commercial market. To avoid turning women into egg farms, let's continue to support research within the law.

Abby Lippman, PhD
Professor, McGill University
Chair, Canadian Women's Health Network

[Editor's Note: Thanks for letting us know about this, Abby!]

Kudos and Double Kudos!

Kudos to our board member, R. Alta Charo -- she was recently elected to the Institute of Medicine, an arm of the National Academies.
But she didn't stop there! She was also recently chosen as a fellow to the World Technology Network, along with Art Caplan and Jonathan Moreno, both of whom are also Women's Bioethics Project supporters! Way to go, girl! Way to go, guys!

Stem cell research and its powerful role in the elections

Michael J. Fox, a well known actor who is suffering from Parkinson's disease, appeared in a TV ad backing a pro stem cell research candidate, in a close race for a Senate seat. The ad, which is both emotional and difficult to watch, shows the actor shaking uncontrollably and highlights his deteriorating health condition. Fox's goal is to persuade the electorate in Missouri that by voting for the candidate who supports stem cell research they offer suffering people like himself a hope for recovery.

According to MSNBC, the Michael J. Fox ad stirred a strong response from voters in Missouri, where a constitutional amendment on the ballot would legalize embryonic stem cell research. The race in Missouri is very close and the incumbent republican senator is facing a tough battle mainly because his opponent, a democrat, is pro stem cell research while he is not.

Arthur Caplan, Director of the Center for Bioethics at the University of Pennsylvania, argues that stem cell research has become a focal point in heated Congressional races across the country (including New York, Florida, New Mexico and Virginia, among others) and democratic candidates are using their pro stance on this issue to gain ground against republicans, who in general oppose public funding for such research. What's noteworthy is the emergence of a powerful group that is backing the pro stem cell candidates and funding these multimillion-dollar TV ad campaigns. Caplan indicates that this is not a small interest group pushing a narrow agenda, rather a well organized effort by lobbyists from a broad set of disease and disability organizations, representing people suffering from cancer, paralysis, heart disease and various other illnesses. These groups have pulled together and with their significant money raising ability they are helping pro stem cell research candidates win important votes.

Furthermore, by focusing their efforts on the ethical arguments in favor of public funding for embryonic stem cell research, it seems these interest groups are changing the minds of politicians on both sides of the political spectrum. To this point, Congress, which was strongly against stem cell research in 2002, recently came close to overriding President Bush's veto which blocked public funding for such research. Therefore, through their access to significant funding, increasing lobbying power and sheer control of votes (as they represent a large constituency of people suffering from a broad set of diseases) these disease advocacy groups are putting stem cell research in the spot light and can significantly influence the outcome of elections on Nov. 7 and beyond.
Read more:

Editor's note: McCaskill Upsets Talent for Mo. Senate

Late Night Election Round-up

As it often does for me, curiousity over a couple of key ballot issues gave way to needing to see the reults before I could shut my brain off for bed (thus explaining being awake at 3:45am EST). Jim Fossett, of the AMBI/Rockefeller Institute Federalism and Bioethics Initiative, gave a great pre-election summary of races directly or indirectly influnced by the stem cell debate over at the AJOB editors blog, which I referenced frequently over the course of the evening.

I figured, since I'm up, it might be fun to beat Jim and the AJOB blog to the punch, and post a basic roundup of election results and key issues. Call it a little late night competition, all in the name of fun and insomnia.

In his great election roundup, Jim listed out a couple of the key Senate races where candidates had announced and different positions on stem cell research, but it was not likely to be the decisive issue of that state election. At last check*, four of those five races have gone to the pro-stem cell research candidate: Cardin (Maryland, D), Brown (Ohio, D), Klobucher (Minnesota, D), and Menendez (New Jersey, D). Virginia's Senate race was not yet called, but with 99% of districts reporting, Webb (D) had garnered 50% of the vote, with a lead of approximately 6500 votes. Close, likely to be challenged, but closer races have been called over the course of the night. (Since it is one of the last races to be called, and the result will tip the balance of power in the Senate, CNN and other sources are taking longer than otherwise normal to call the results in this race.)

And of course, Missouri was ground zero for stem cell politics this election, with McCaskill and Talent both weighing in on the issue, Amendment 2 over whether to allow stem cell research, and the now-infamous Michael J. Fox advertisement. Although I've not heard if he's conceded, yet, CNN and several other media outlets are calling the race close, but in McCaskill's favour. And maybe more importantly, in a very close race (51%/49%, with 97% of districts reporting), Missouri voted to allow stem cell research! This particular amendment result flipflopped over the course of the evening, and is the main reason I'm still awake at this hour - I became emotionally invested in finding out the result! What will be interesting is the research that will come out over the next couple of weeks, indicating whether or not Fox's advert did indeed get people out to vote.

In other key ballot issue news:
Banning Same Sex Marriage
Same sex marriage bans were on the ballot in eight states, with Colorado having two referendums, one to ban gay marriage and one to allow domestic partnership. To say the results are disappointing is an understatement:

• Arizona, Proposition 107: Yes, 49%, No, 51%, 97% precincts reporting


• Colorado, Referendum 43: Yes, 56%, No, 44%, 82% precintcs reporting


• Idaho, Amendment 2: Yes, 65%, No, 35%, 72% precincts reporting
  
• South Carolina, Amendment 1: Yes, 78%, No, 22%, 99% precincts reporting


• South Dakota, Amendment C: Yes, 52%, No, 48%, 96% precincts reporting


• Tennessee, Amendment 1: Yes, 80%, No, 20%, 98% precincts reporting


• Virginia, Ballot 1: Yes, 59%, No, 43%, 99% precincts reporting


• Wisconsin, Referendum 1: Yes, 59%, No, 41%, 95% precincts reporting

With Colorado banning gay marriage, in a separate referendum (#1) they also banned domestic partnerships, which would have legalized

domestic partnerships, providing same-sex couples the opportunity to obtain the legal protections and responsibilities granted to married couples under Colorado law. The measure specifies that domestic partnerships are not marriage and do not change the public policy of the state, which defines marriage as only the union of one man and one woman.

This particular referendum flipflopped back and forth as tallies came in, but finally seems to have settled on not passing, with 53% of the precincts voting no.

Affirmative Action
In controversial and interesting news, Michigan's Proposition Two, a proposed amendment to the state constitution to

"prohibit the University of Michigan and other state universities, the state, and all other state entities from discriminating against or granting preferential treatment based on race, sex, color, ethnicity or national origin."

was passed (58% yes, 42% no). This, of course, stemmed from a 2003 University of Michigan case (Grutter v. Bollinger) that went to the Supreme Court. The Supreme Court, to the public opposition of the Bush Administration, ruled in favour of affirmative action. Do our resident lawyers know if this proposition, being passed, can be challenged legally, or is this proposition a response to the Supreme Court ruling, in an effort to legally ban affirmative action?

Abortion
In issues pertinent to women's health, California and Oregon both similar measures attempting to enact parental notification laws for minors seeking abortions. This was Proposition 85 in California, and Measure 43 in Oregon. They had similar language, both wanting to

prohibit abortion for a minor until 48 hours after a physician notifies her parent or legal guardian, except in cases of medical emergency or a parental waiver.

In addition, Measure 43 defined medical emergency to not include incest or rape. Neither of these passed, with voters in both states voting 54% no, 46% yes.

South Dakota's extremely controversial complete ban on abortion, signed into legislation by Gov. Rounds back in March as an intentional challenge to Roe v. Wade, was rejected by voters, with 55% voting no on Referendum 6 (ban on abortion). Interestingly, Gov. Rounds was not voted out of office for signing the legislation, but was instead voted back into office with nearly 70% of the vote.

I'm sure there were other very interesting races and issues in yesterday's election, but these are the things that caught my eye. Oh! And one other thing. While I was passing the time waiting for election results to come in, I decided to see if there was any truth to the truthiness of Stephen Colbert's claim that all of the Congressmen/women up for re-election who had appeared on The Colbert Report in the last year were re-elected. As you may or may not know, both Republicans and Democrats were strongly advised to not appear on Colbert's show, with to-be Speaker Pelosi's video clip advising fellow Democrats to avoid the show getting heavy rotation in most media outlets. And behold, there was indeed truth in the truthiness. Of the 26 Congressional districts that have been featured on the show and up for re-election, all 26 incumbents who appeared on the show were re-elected.

However, if you were a challenger featured in the Better Know a Challenger segment of the show (airing the last two months, as incumbents from both sides of the political spectrum avoided Colbert), the news isn't so good. Only one of the six challengers won their seat - so congratulations to New York's 19th Congressional District (the fightin' 19th!) John Hall (D) for bucking that particular trend. Good news for him, bad news for anyone hoping that there was an actual political bump to appearing on The Colbert Report.

*All facts and numbers in this post come from CNN's Election 2006 coverage, accessed around 03:45EST, unless otherwise noted. Most numbers are unlikely to change at this point, but several elections are close enough that they are likely to be challenged and ballots recounted in the next few days.