"The Heart Truth"

I recently received an email asking us to help promote National Wear Red Day (February 2, 2007) which is part of the National Heart, Lung and Blood Institute's "Heart Truth" campaign to make women more aware of the danger of heart disease. The campaign's goal is to "give women a personal and urgent wake up call about their risk of heart disease".

This is a worthy campaign and if you are inclined to wear red, go for it. But I think there is another "heart truth" that needs to be told. We didn't just magically find out a few years ago that heart disease in women typically follows a different course than it does in men (risk factors as well as diagnosis and treatment.)

We have this critical data because women's health activists, women Congressional leaders, especially Olympia Snowe (R-Maine) and Patricia Schroeder (D-Colorado), and members of the medical community led by Nanette Wenger, MD challenged the prevailing notion that women were "mini-men" and insisted that women be included in clinical heart study trails. Until the early nineties, men were the model subjects in most funded biomedical studies.

Medical and women's history buffs can check out the article "Coronary Artery Disease in Women: A Historical Perspective" by Joan L. Thomas, MD and Patricia A. Braus, MPH published in the AMA Journal of Internal Medicine (Feb 23, 1998) for more exacting details.

But the bottom line from their study: "Pressure from women concerned about the emerging knowledge about the adverse effects of heart disease in women helped to persuade a group of public officials of the importance of funding research related to women and heart disease."

Now that is the heart truth.

The Ethics of Convenience

We are in the midst of Bears mania here in Chicago and while most of the excitement is focused on the actual football team, this story has been making headlines as well: Wife induces labor so husband can go to Bears game

My favorite quote comes from the mother, Colleen Pavelka:

I thought, how could [Mark] miss this one opportunity that he might never have again in his life?

It's not clear here whether she's talking about the birth of her son, or the fact that the Bears haven't made a Super Bowl since 1985.

While this story has provided us with amusing water cooler talk, it does bring up ethical questions over whether or not medical care should be altered at the convenience of the patient and/or the patient's family.

Specifically, there has been a documented rise in the number of C-sections in the last few years and it has been noted that many of these are being requested as a matter of convenience.

This trend is disturbing considering the recent studies that show the risks to newborns born by voluntary Caesarean sections.

NYT Article here (login required):

Researchers have found that the neonatal mortality rate for Caesarean delivery among low-risk women is 1.77 deaths per 1,000 live births, while the rate for vaginal delivery is 0.62 deaths per 1,000.

It appears Colleen Pavelka did not undergo a Caesarean, however induced labor is not without its risks either.

Hopefully such events will prompt discussion about the pros and cons of voluntary C-sections and delivery that is scheduled strictly as a matter of convenience. We live in a time where for many, every minute of the day has been scheduled ahead of time. Perhaps some things should still be left up to nature.

On a lighter, more personal note, had I been in Colleen's position the headline Sunday morning would have read: "Husband's life spared after suggesting inducing labor early so he could 'make it to the game' "

Direct to Consumer Advertising Showdown

Drug advertising aimed at consumers, a fast-growing category that reached $4.5 billion last year, will face hard scrutiny in the new Congress, according to industry critics in both the House and Senate, according to a NY Times article published today.

The consumer ads will be on the griddle early in this session at hearings on the user fees that manufacturers pay to speed the reviewing of new drugs by the Food and Drug Administration. The user fee law will die in the fall unless Congress acts to renew it.

The pharmaceutical industry, which often gets what it asks for from Congress and the executive branch, seeks to renew the law and add a new set of user fees that would be pay salaries for additional F.D.A. employees to evaluate all consumer drug ads, before they are shown on television.

Both the industry and its critics agree that there should be a pause before the advertising starts — to allow time for doctors to learn about a new drug. The companies want the delay to be left up to them, but critics say the F.D.A. should require a wait of up to two years. Criticism of direct-to-consumer advertising has intensified since 2004, after Merck withdrew Vioxx, a heavily advertised painkiller, after a clinical trial showed that it sharply increased the risk of heart attacks and strokes.

To read more, click here.

One Nation, with liberty and justice, perhaps healthcare coverage, for all

From the Washington Post this morning:

Universal Health Coverage Attracts New Support:
Onetime Foes Become Unlikely Advocates, Citing Rising Costs and Tougher Access
By Christopher Lee

Harry and Louise have had a change of heart.--Thirteen years after television ads from the insurance industry featuring the fictional middle-class couple helped kill the Clinton health-care plan and make universal coverage politically radioactive, comprehensive proposals for expanding coverage to millions of uninsured Americans are flowering again inside the Beltway and around the country.

And this time, advocates hope, the political climate is right for the best ideas to grow, in large part because many business groups that opposed earlier efforts now agree that rising health-care costs and increasingly tougher access to insurance are unsustainable trends. To read on, click here.

Teenage pregnancy myth dismissed

From the BBC: The perception that teenage girls with unwanted pregnancies have been less careful about contraception than older women has been dismissed by a study.

Doctors at a Glasgow hospital analyzed the birth control attempted by nearly 1,000 women requesting abortions.

They found the proportion of older women who had used no contraception at all was roughly similar to the percentage of teenagers.

The findings are published in the journal BJOG. To read on click here.

The Anniversary of Roe vs Wade and Abortion Under Attack

In light of upcoming anniversary of Roe vs. Wade, I thought it was fitting that I had the pleasure and opportunity of interviewing Krista Jacob, the editor of Abortion Under Attack, a book which addresses the spectrum of personal and social influences, ranging from dealing with remorse to the impact that economics, race, and culture have on a woman's right to choose. Krista takes the stance that advocates of a woman’s right to choose are losing the battle—in part because those working to protect that right are ignoring a complicated truth: Many people who support legalized abortion do so with differing personal philosophies and varying levels of conviction. Today, young people are better able to grapple with the nuances of emotion and experience about this difficult issue because they’ve grown up in a post-Roe America. In her new book Abortion Under Attack: Women on the Challenges Facing Choice, Krista Jacob has compiled an impressive collection of essays by pro-choice advocates that addresses the spectrum of personal and social influences, ranging from dealing with remorse to the impact that economics, race, and culture have on a woman’s right to choose.

Here are some of the questions and answers from her interview:

Q. Society has been inundated with the abortion debate for the last few decades—hasn’t everything already been said? Don’t people already identify with one of the two camps, “pro-life” or “pro-choice”?

Krista: It’s true that a lot has been said (and said again) about abortion over the past few decades. Unfortunately the debate has become so vitriolic in both public and private spheres that many reasonable people shy away from this issue, that is until if affects them personally.

That said, regardless of a person’s personal experiences, there are millions of people who have feelings and opinions about abortion that fall under the rubric of “pro-choice,” yet shy away from identifying as such because they perceive the pro-choice position as dangerously simplistic and monolithic. Many have expressed to me that they have felt alienated in some pro-choice circles because they may have ambivalence or moral conflict with abortion itself, or they may even feel remorse or regret about their own abortion.

Q. There are so many books that address the topic of abortion—how is this one different? Why did you put this book together?

Krista: My vision for Abortion Under Attack was informed primarily by my work counseling women and couples coping with unplanned pregnancies. In this work, I found a significant disconnect between the realities of these people’s experience and the public discourse surrounding abortion. Abortion Under Attack is somewhat of a heretical pro-choice book. It tackles some of what have been treated as taboo subjects within the pro-choice movement, such as the question of fetal pain, grief or remorse after an abortion, late term abortion, and the problematics of “choice” rhetoric when placed within the context of race and poverty. I hope this wonderful collection will open minds and build bridges where they can be built.

Q. Where do you see that bridges can be built?

Krista: I think there are many opportunities to build bridges with people who are morally conflicted or ambivalent about abortion itself, yet still share our same vision of reducing the number of unplanned pregnancies through promoting comprehensive and accurate sexuality educational programs and through increasing access to birth control for all women and couples. I believe this is a significant percentage of people whose participation would greatly strengthen our movement.... There is an excellent essay in my book entitled, "The Rhetoric of Abortion: Reflections from a Former Pro-Life Activist," in which the author shares her experience as a member of the anti-choice movement and how she came to be a supporter of reproductive rights. It's an excellent essay and illuminates the importance of reaching out to this group of people.

Q. What is the “new dialogue” that contributors address in this book? What new ideas are brought to light?

Krista: What I refer to as the “new dialogue” in Abortion Under Attack includes the vast array of views and experiences surrounding abortion that I would still term “pro-choice,” yet haven’t always been welcome in traditional pro-choice circles. There are people who believe that abortion kills a life but still work actively to protect a woman’s right to choose what is right for her and her family. There are deeply religious and conservative women who have abortions. And there are women who grieve deeply for the pregnancy they aborted, and who desperately need supportive, non-politicized resources. This is the new dialogue I’m talking about, and I wanted to present it in a unified way in order to help change how abortion is talked about in the mainstream. Essentially this new dialogue is a movement within a movement, one that started at the grassroots level, in women’s health clinics, among women sharing stories about their abortions, and is slowly changing and broadening the vision and strategy of the larger pro-choice movement.

Q. If you could only elucidate three kernels of information that you discovered in researching your book, what would they be?

Krista: The personal is still political and the political must embrace the plurality of personal experience. I understand that political messages must be concise but they needn’t be overly simplistic and they mustn’t be developed at the cost of excluding marginalized people.

People are extremely ready for and open to a new dialogue about abortion, and now is the right time to cultivate this dialogue. Abortion is under serious attack and unless we can change the tone of our dialogue, on a large scale, we risk losing legal abortion completely.

Our movement must be responsive to a changing and evolving society. As I say in my Introduction, it is as much our right to have varying opinions about abortion as it is our right to have access to safe, legal, and dignified abortion.

Virginia considers requiring girls to get HPV vaccine

A bill has been introduced in Virginia that would require girls to receive their first vaccination against HPV prior to their entry into middle school, or have parents apply for an exemption after reading the literature on and being educated about the vaccine. The bill would add HPV to the list of immunizations needed for school attendance, and make the state one of the first to require the vaccine.

On the face of this, it sounds good - but digging a bit further in to it, a few questions are raised. While I initially wanted to cheer to see that a Republican was sponsoring the bill, it turned to dismay and, well, suspicion as I read the following:

Hamilton said pharmaceutical company representatives approached him about submitting the bill, probably because he chairs the House Committee on Health, Welfare and Institutions. Drug companies have been among the largest contributors to Hamilton's election campaigns.

So the companies that have financed most of his campaigns now want him to make a vaccine, which is not covered by all insurance companies (and runs around $350), mandatory for all girls?

Hmm. Strikes me as a bit ethically questionable.

Of course, one thing that many people are saying is ethically questionable is vaccinating girls against a sexually transmitted disease, something that doesn't raise any questions for me. Why? Here are a couple of reasons:

• 1) At the age people are talking about (9-13), most kids aren't being given specific and detailed information about what the shots they're receiving do - it's just part of the evils of going to the doctor. It's not like anyone is sitting down saying "alright, now you won't get measles, mumps, or cervical cancer so you can be sexually promiscuous now!"


• 2) Hepatitis B is a required immunization, and is sexually transmitted (among other ways)


• 3) We're talking something that kills. There are 10,000 new cervical cancer cases diagnosed every year, and something like 3500 women die every year. Given that we know most people do not abstain from sex until marriage (and we know this has been true for a long time), safety really seems like it should trump anything else. Or put another way: do you want to be the parent whose daughter tells you she has cervical cancer, knowing you could have prevented it through three simple shots?

I know parents hope that their children will adhere to their morals, and I support teaching your children your values and beliefs. But I also think there's the necessity to be realistic; if you can prevent disease via a combination of teaching morals and actual protection, why would you choose otherwise?

I remain skeptical of Hamilton's motivations for proposing this bill, but I suppose that sometimes, the ends do justify the means.

Jobs of the Future (that will require ethics training?)

An interesting article in the Globe and Mail asks how these jobs would look on your business card:

Bioaesthetic coach

Experience designer

Health-enhancement mentor

Intercommunity farmer

Personal genome optimizer

Chief health officer

Manager of faith-based relations and initiatives

Chief innovation officer

Executive chef, space airline

Global work process co-ordinator

Skycar mechanic

Underwater hotel manager

Vice-president of experiences

They may sound farfetched, but these are the kinds of jobs that workplace experts gazing into the future expect today's children, and their children, will hold down.

For the past several years, Washington-based World Future Society has been publishing articles in its Futurist magazine about what tomorrow's workplace will look like...

The article goes to explain that one category of jobs will focus on enhancing the human body by keeping it well, reversing the signs of aging, or implanting tiny computers that extend the brain's memory and expand cognitive powers. Human bio-enhancement promises to be a big field, with crazy-sounding opportunities, such as bioaesthetic coaching, somaelectronic integration, experience design, and personal genome optimization.

To read on, click here.

Change in prenatal Down syndrome screening recommendations

The American College of Obstetricians and Gynecologists (ACOG) recently issued new guidelines regarding prenatal screening. The new recommendation is that all women--regardless of age--be offered prenatal testing for Down syndrome. Until now, more invasive diagnostic testing (amniocentesis and chorionic villi sampling, or CVS) was routinely offered to women starting at age 35. Age is no longer to be used as a cutoff for these tests; and ACOG anticipates that the availability of ultrasound testing will help decrease the use of invasive tests for prentatal diagnosis of Down syndrome. You can read more about the recommendation here.

I've written here before about the disability-rights critique of eliminating disability by preventing birth. With regard to Down syndrome, there are a few additional issues to consider. One is that some number of women will receive this test without really understanding ahead of time what they might be getting themselves into. A positive screening result would indicate a higher-than-average risk that the fetus has Down syndrome. This forces a choice of whether to pursue diagnostic testing. A positive diagnostic test then forces a decision about whether to continue the pregnancy, in light of this information.

I worry that testing will be ordered routinely--especially as less invasive options become available--and some doctors will not take the time to explain to women the choices they will face if the screen comes back positive.

And given that many, if not most, medical practitioners view abortion for Down syndrome as an appropriate choice, how will they guard against inappropriately influencing patients' decisions? A doctor I know once referred to abortion in this situation as "a no-brainer. " I wonder what, if anything, she would say about screening for Down's to a woman who's 15 weeks into her pregnancy.

The Call for Genetic Privacy

WASHINGTON, Jan. 17 — President Bush on Wednesday urged Congress to pass long-stalled legislation to safeguard genetic privacy, a measure experts say would encourage millions of Americans to undergo testing that could lead to prevention and treatment of cancer and other diseases.

“If a person is willing to share his or her genetic information, it is important that that information not be exploited in improper ways,” Mr. Bush said at the National Institutes of Health. “And Congress can pass good legislation to prevent that from happening.” He added, “We want medical research to go forward without an individual fearing personal discrimination.”

For years, scientists and patients’ advocates have pushed for legislation barring employers and insurance companies from discriminating based on the results of genetic tests. A so-called genetic discrimination bill passed the Senate unanimously in 2003, but died in the House. To read on, click here.

Bioethics and Women: Across the Life Span

It's a snow day in Seattle (three whole inches!) so all my meetings were cancelled. This unexpected gift of time gave me the opportunity to read Mary Briody Mahowald's recently published book: Bioethics and Women: Across the Life Span (Oxford University Press). I had the privilege of meeting Dr. Mahowald last March when she participated in the WBP/Ford Foundation sponsored planning meeting in Washington, D.C., to organize the first-ever Bioethics Seminar for Women State Legislative Leaders.

Dr. Mahowald's book is not "bioethics-lite." Reading the first chapter transported me back to my graduate school days. In the first 30 pages alone it seems as though she touches on every critical philosophical underpinning of bioethics. Always a teacher, she has a delightful habit of including little explanatory notes in the text - in case your memory is a little fuzzy on Latin terminology or you aren't up on the latest medical interventions.

I went to Amazon.com to get a book cover image and found an editorial overview so much wiser than one I could craft. Here is an excerpt:

All persons, while different from one another, have the same value: this is the author's relatively uncontroversial starting point. Her end point is not uncontroversial: an ideal of justice as human flourishing, based on each person's unique set of capabilities. Because the book's focus is women's health care, gender justice, a necessary component of justice, is central to examination of the issues. Classical pragmatists and feminist standpoint theorists are enlisted in support of a strategy by which gender justice is promoted.

Two features of the book are unique: (1) the topics presented cover the entire life span of women, not just those related to reproduction; (2) a range views about moral status are applied not only to fetuses but also to individuals already born.

While delineating and defending the book's perspective, the first section provides an overview of bioethics, critiques prevalent approaches to bioethics and models of the physician-patient relationship, and sketches distinguishing aspects of women's health care that are prevalently neglected. The second section identifies topics that are indirectly as well as directly related to women's health, such as domestic violence and caregiving. Brief cases illustrate variables relevant to each topic. Empirical and theoretical considerations follow each set of cases; these are intended to precipitate more expansive and critical examination of the issues raised.

The last section is devoted to an egalitarian ideal that may be pursued through an ethic of virtue or supererogation rather than obligation. By embracing this ideal, according to the author, moral agents support a more demanding level of morality than guidelines or laws require.

Bioethics professors - take note: This book would be a great addition to your syllabus.

If I Only Had a Brain

Reproductive technologies seem to be getting all the press these days: from designer/deformer babies, made-to-order embryos, to womb transfers. And while these issues are of critical importance to women, I believe neuroscience is the emerging field we need to keep an eye on (and drive the policy debate.)

Advances in neuroscience are going to pose some of the most important ethical questions yet about what it means to be human – challenging our concepts of free will, gender and genetic determinism, and what sets us apart from other species. Many believe that it will displace genetics as the leading edge of scientific discoveries in the 21st century.

I was pleased to learn about an upcoming conference on the implications of neuroscience - see details below. The Institute on Biotechnology and the Human Future has recruited an impressive range of scholars and policy makers including:

Marsha Darling, Ph.D., Professor of history and interdisciplinary studies and director of the African American & Ethnic Studies Program at Adelphi University;

Andrew Imparato, J.D., president and CEO of the American Association of People with Disabilities;

U.S. Representative Brad Sherman, J.D., CPA, (D-CA), member of the House Committee on Science;

Patricia Smith Churchland, Ph.D., professor of philosophy at the University of California San Diego and author of Neurophilosophy: Toward a Unified Science of the Mind-Brain;

Linda MacDonald Glenn, J.D., L.L.M., faculty member in the Alden March Bioethics Institute at Albany Medical Center and in the University of Vermont’s College of Nursing and Health Sciences

Conference details:
A Spotless Mind? Policy, Ethics & the Future of Human Intelligence
Friday, February 16, 2007 - 8:30 a.m. – 5:00 p.m.
National Press Club, 529 14th Street N.W., Washington, D.C.
RSVPs are required. There is no charge for the event.
E-mail: rsvp@thehumanfuture.org

I'll be there and will be reporting live from the conference.

First U.S. Uterus Transplant Planned -- Is the Risk Justified?

From the Washington Post:

Uterus Transplant may enable Pregnancy

-- A New York hospital is taking steps to offer the nation's first uterus transplant, a radical experiment that might allow women whose wombs were removed or are defective to bear children.

The wombs would come from dead donors, just as most other organs do, and would be removed after the recipient gives birth so she would not need anti-rejection drugs her whole life. To read on...

We've blogged about this before -- but two big questions arise that no one seems to want to answer: What about the impact of anti-rejection drugs on the fetus during development? From what I understand, anti-rejection drugs are teratogenic or embryocidal. Does a woman's desire to bear a child justifiably outweigh the likely harm to the fetus? And if you decide that a woman could justifiably exercise her autonomy in such a manner, why not allow male pregnancy? (which we've blogged about before, too, here and here.) Either through a womb transplant or via an embryo implanted in the peritoneal sac? (some sort of flexible mesh that would allow growth of the embryo/fetus and yet prevent the endometrial and placental tissues from attaching to major organs would have to be devised).

I could imagine some argument about this being a women's natural role, but pu-leeze, do we really want to go there?





(image courtesy of http://www.malepregnancy.com -- an artist's rendition)

A Taste of US Family Life, A Tale of International Heartache

We've been talking about Chinese adoptions lately, and the new guidelines China has put in place. Today, the New York Times has a heartbreaking story about international adoptions from other countries, with a focus on the Ukraine and Russia. As strict as the Chinese adoptions are, they at least are not this manipulative*! The story is just a nightmare of things done wrong: bribes paid to directors, organizers, and agencies, older children being sent on "hosting tours" to potential adoption parents so that the parents can, and I quote, have a "trial run" at the children, only for everyone to become attached - and then the prospective parents find out that the child is not available for adoption, or is being fought over by multiple families, or that if they do want to adopt, they must come to the originating country and be shown a portfolio of available children which may or may not include the child that "toured" with them.

And this isn't even taking into account the child, who is often told upfront by the agencies that they are auditioning for their "forever family"! Many children "test" well, and so are repeatedly sent to different families, yet never actually made available for adopting - the hope appears to be that they will lure the families in to adopt other children.

The United States is in the process of attempting to ratify an intercountry adoption treaty with several countries, which supposedly includes a code of ethics to prevent these kinds of systematic abuses, but I have to wonder at how effective that will really be. And for too many people, prospective parents and children alike, it's way too little, way too late.

*At least from what I saw, as close friends adopted their daughter several years ago, and are now going through the process - following the new rules - to adopt a second girl. And as my "niece" is absolutely adorable, and has me wrapped completely around her finger, I am in no way impartial or objective about adoptions because of it.

And I thought the MegaMillions Lottery was bad enough ...

An interesting article appeared on the BBC website yesterday (http://news.bbc.co.uk/2/hi/health/6243705.stm). An association of British plastic surgeons is criticizing a company in the Czech Republic for running a lottery in which the grand prize is a cosmetic surgery package worth £6,000 (over $10,000 US), describing it as a marketing gimmick. I could rant for pages about medical marketing, medical tourism, or unrealistic media-driven notions of beauty but my brain is still oxygen-starved after my daily run ... according to the latest issue of Men's Health, I'm a little too fat thanks to my holiday overindulgence.

Borrowing a page from the environmental activist playbook, who often purchase hunting licenses for species like mountain lions but simply not use them, I have already bought a couple of lottery tickets. If I win, I plan to donate the prize package to someone truly needy, such as a burn victim, breast cancer survivor, or a child born with a cleft palate. If you'd like to do the same, you can buy your lottery tickets here: http://www.europa-international.net/

More on the “Pillow Angel” case--Sci Am asks 3 bioethicists to weigh in

Scientific American asked “three of the country's most esteemed bioethicists" to give their professional opinions on whether the ‘Ashley Treatment’ was a wise decision.
http://www.sciam.com/article.cfm?chanId=sa003&articleId=F41E496C-E7F2-99DF-33E40A7C8187563C

The above link includes the unedited transcript of e-mail dialogue between the participants:

Joel E. Frader, MD, is division head of general academic pediatrics at the Children's Memorial Hospital, Chicago, as well as a professor of pediatrics/medical humanities and bioethics at Northwestern University's Feinberg School of Medicine.

Norman Fost, MD, MPH, is a professor of pediatrics and bioethics as well as director of the program in bioethics and vice chair of the Department of Medical History and Bioethics at the University of Wisconsin Medical School.

Benjamin Wilfond, MD, is director of the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital and a professor at and chief of the Division of Bioethics, Department of Pediatrics, University of Wisconsin Medicine.

AFS Cells: A Non-controversial source of pluripotent cells?

There is a new report out today that suggests there is a new, non-controversial and "ethically sound" source of pluripotent stem cells: amniotic-fluid stem cells, which, as the name indicates, are stem cells found free-floating in the amniotic fluid. They are also apparently present in the placenta.

According to Dr. Anthony Atala, the specialist at Wake Forest University who led the research team, these cells are neither embryonic stem cells nor are they adult stem cells. They're something in between, fully flexible like embryonic stem cells, but non-controversial. And this is where I take issue. Dr. Atala is saying, and I quote from the above article,

the amniotic cells can be taken easily and harmlessly from the placenta or from pregnant women by amniocentesis

while David Prentice, a senior fellow in life sciences at the Family Research Council, (who strongly oppose embryonic stem cells) says that the AFS cells come with "little ethical baggage". But anyone who's been through amniocentesis knows that there is actually a risk of miscarriage with every insertion of a needle into the womb; according to the CDC, it's a risk of one in 200 to one in 400 women will miscarry, depending on the skill of the person performing the procedure.

This is not harmless. This is not easy. This is not little ethical baggage. If it's so bad, so wrong, to create embyronic stem cells because of the loss of potential life, how can anyone justify the potential miscarriage of a developing, in utero fetus?

Cancer Study Determines Cost in Patient Time

How much a disease costs society plays a role in social policy-making so getting the price right is a concern. What do we count in our costs? According to Len Lichtenfeld, MD of the American Cancer Society, “Cancer is more than just the dollars and cents for the medicines and the treatments and the doctors. It is also the lost opportunities for patients.” In a study to be published today in the Journal of National Cancer Institute, researchers examined the records of 763,000 cancer patients covered by Medicare 1995 to 2001 to determine the time people typically invest fighting 11 forms of cancer in the first year of diagnosis. They estimate, for example, the average hours a woman diagnosed with ovarian cancer spends is 368, those diagnosed with lung cancer, 272, and people with kidney cancer, 193. Patients with ovarian cancers lost the most time. The monetary value researchers attach to the time spent waiting in offices for doctors, scans, and tests, and having in patient and hospital treatment, is 2.3 billion dollars (US); this amount was determined by assigning an hourly wage of 15.23/hr, the median US wage rate in 2002. This time does not include that spent at home recovering from surgery or chemo, for example. The NY Times notes that the study did not look at the value of time spent by members of a patient’s family

China's Henan Provence Bans Abortion Drugs

In their continuing effort to stem their increasingly gender imbalanced population, China's Henan province has banned abortion drugs, after admitting that sex-based abortions (despite being illegal) are still widespread.

Unfortunately, I suspect this will simply do one of two things: either make abortions more dangerous by making them back alley (even if drug-based back alley), or increase the number of female babies abandoned in orphanages.

Congratulations to us for being named Time's Person of the Year!

TIME magazine has named us (and you and our fellow bloggers) as Persons of the year...It's about all of us who have an online presence, helping to shape the blogosphere and drawing attention to issues that affect us... as Time puts it, "It's about the cosmic compendium of knowledge Wikipedia and the million-channel people's network YouTube and the online metropolis MySpace. It's about the many wresting power from the few and helping one another for nothing and how that will not only change the world, but also change the way the world changes."

Nice to know that we are making a difference!
If you wish to become part of blog team, and make a difference, please email linda (at) biomedlaw.com or khinsch (at) womensbioethics.org.

Singing the Body Politic...

Paul Abrams of the Huffington Post outlines the science of stem cells and summarizes a talk he gave for the Women's Bioethics Project: Can Stem Cells Help Heal the Body Politic?: To understand "stem cells", and the debates about them, a simple analogy may be useful. Imagine that you have an 8 year old child who is a spectacular athlete, who can run, jump, swim, skate, play tennis, do acrobatics...she has the potential to be anything, but has not yet chosen. To read on, click here. Thanks, Paul!

Call for Abstracts - Ethical Issues in Biomedical Engineering

SUNY Downstate Medical Center and Polytechnic University are sponsoring the Fourth International Conference on Ethical Issues in Biomedical Engineering, April 20 - 22, 2007

Suggested topics for presentations include:

• Animal testing for medical devices
  
• Code of ethics for bioengineers
• Clinical trials of biomedical devices
• Ethics of genetic engineering and cloning
• Ethics of implant use and marketing
• Ethical issues in bioengineering research ethical issues in clinical engineering
• Privacy and bioinformatics
• Ethics of nanobiotechnology ethical issues in tissue engineering

Abstract submission deadline January 15, 2007

Notification of abstract acceptance February 15, 2007

For more info, check out the website

OR contact:

Subrata Saha, Ph.D. Conference Chair
Department of Orthopaedic Surgery & Rehabilitation Medicine
SUNY Downstate Medical Center
450 Clarkson Avenue - Box 30
Brooklyn, New York 11203

Email - subrata.saha@downstate.edu

Office – (718)-613-8652 Fax – (718)-270-3983

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