Embryonic stem cell research: a possible alternative?

Rick Wiess of the Washington Post and Nicholas Wade of the NY Times both report on an online article at Nature.com about a method to create nonviable embryos for embryonic stem cell research. An example cited in the articles is the creation of an embryo that lacks the specific gene to develop a placenta; therefore, the embryo cannot implant and develop. From one viewpoint (a viewpoint supported and advocated by William B. Hurlbut, a Stanford University professor and member of President Bush's Council on Bioethics) this avoids the destruction of a viable embryo, and therefore, ethically permissible. From another viewpoint, this is the equivalent of "purposeful creation of fatally hobbled beings to use as research subjects" and is therefore ethically impermissible.

While this discussion is very interesting and may lead to a compromise in the current stalemate on federal government sponsored ESCR, one question still remains to be discussed: What of the status of the women providing the embryos?

The Politics of Bioethics: Getting Progressive Voices Heard

On October 3, a group of progressive bioethicists, including WBP board member and founding scholar Jonathan Moreno, got together at a meeting for the Center for American Progress. Hoping to influence public policy, other prominent bioethicists, including Art Caplan and Alta Charo explained that their approach is more optimistic about science and technology, and they will be focusing on issues that are too often not covered by conservatives, such as inequities in the healthcare system. More on this panel is reported in today's Nature (subscription required).

I look forward to hearing more about this at the upcoming ASBH meeting in Washington, D.C....

In pain? Head for a better neighborhood.

According to a new study from the University of Michigan Health System, minorities and people with low incomes have less access to pain medication from their local pharmacies than do well-off white people.

The study, which compared the availability of opioid pain relievers in pharmacies from different areas, found that these drugs were more readily available in upscale ZIP codes than in poorer neighborhoods. While researchers point out that most of the pharmacies had "sufficient" supplies of medication--defined as at least one drug in each of three categories--the gap in the number of local pharmacies that stocked sufficient supplies was significant: 86.9% vs. 54.2%.

Inadequate pain relief is a problem across the country, which makes it especially distressing to learn that one group is particularly underserved in this regard.

The study is published in today's issue (vol 6, issue 10) of the Journal of Pain.

Attention Women: Sleep is not a Luxury

Research on the relationship between sleep and health is growing quickly. Scientists have long known that sleep disorders, such as sleep apnea, narcolepsy, and chronic insomnia, can lead to serious health problems, and now there is data that support the claim that otherwise healthy people who do not get enough sleep, or have erratic sleep patterns, risk serious illness as a result. According to Eve Van Cauter of the University of Chicago: "Lack of sleep disrupts every physiologic function in the body." Immune system dysfunction, heart attack, stroke, diabetes, and cancer are now correlated with sleep deprivation. Adults between age 32-49 who sleep less are more likely to be obese; and it is not just that obese people are less likely to sleep, it is that people who sleep less in this age group are likely to become obese, according to the October issue of the journal Sleep, the official journal of the Associated Professional Sleep Societies. Chronic insomnia appears most frequently in women and male and female elders and women are twice as likely as men to have difficulties falling asleep or staying asleep. Only recently has the medical community focused on women's sleep disorders.

Fear and Loathing in Beverly Hills

Liza Mundy, a staff writer for the Washington Post, writes about America's obsession with infertility in a sharp and incisive critique of NBC's latest medical show -- a fertility clinic soap opera called "All Too Conceivable". Watching the show with a combination of what she describes as "revulsion and fascination", Mundy points out that in the United States, "we do not have much in the way of public discussions of reproductive technology, in part because we do not seriously regulate it." Which brings up a good question: in order to have serious public discussions, do we have regulate something? What do you think? Comments welcome...

Happy Birthday to the WBP!

From our founder, Kathryn Hinsch:

Pantry, Pilgrimage, and a Promise

One year ago today: A Tribute to Our Founding Scholars
Most of us are familiar with the storied beginnings of various software companies that were started by men in their garages. The Women's Bioethics Project was started, appropriately enough, by a woman in her kitchen.

I had just been granted a leave from my graduate studies at Harvard Divinity School and was back in Seattle. During my course of study at Harvard I realized that the world didn’t need another bioethicist, what it needed was a way to get women’s underrepresented voices heard in current bioethics debates. In studying bioethics and public policy, it was quite obvious that women’s life experiences were not being taken into account by the largely male population of lawmakers. Alone in my kitchen, I cooked up the idea of a think tank focused keenly on women and bioethics. It was one of those pivotal and defining moments.

I needed a reality check, so I contact Dr. Kelly Fryer-Edwards, a professor at the University of Washington, School of Medicine who I had met the summer before during my internship there. I asked Kelly if she would be willing to meet to discuss a wild idea. She was game.

We began to hold a series of dinners with Seattle-area scholars to discuss what this think tank could become. Over Thai food and beer, quiche and wine, we debated approaches, structures, issues, and funding. Week by week we went from a blank piece of paper to paragraphs to a framework. Before we knew it we had a strategic plan, and ultimately, a business plan. I thought my time at Microsoft had prepared me for intense debate, but these scholars pulled no punches. It was arduous yet scintillating work

Finally, last October, one year ago today, we felt confident that we had a workable plan. At that point Kelly and I decided it was time to make a pilgrimage to the birthplace of bioethics: The Hastings Center. Kelly arrived in upstate New York by train; I arrived by car with a malfunctioning GPS. We had an appointment to review our plan with the scholars at the Hastings Center, which became an exciting and turbulent day of intense feedback. That night Dr. Thomas Murray, President of The Hastings Center, and his wife Cynthia, took us to dinner. Over pasta and wine, Tom gave use wise counsel and pledged his support. The evening ended with hugs all around. The Women’s Bioethics Project had been born.

Kelly and I returned to Seattle with the formidable task of actually implementing the plan. We have worked hard and accomplished a lot since that autumn day in New York, more than we ever dreamed, really. I’d like to commemorate it by thanking the scholars who spent many hours building the Women’s Bioethics Project. They only asked for one thing: if the think tank became as successful as we all dreamed it would be, that I promise not to be seduced by the lure of media-grabbing issues like cloning but instead remember the bioethics issues like poverty, access to health care, and looking after children and the elderly that truly affect women’s lives. It is a promise I intend to keep.

Kathryn Hinsch

Founding Scholars:

Licia Carlson, PhD Assistant Professor, Department of Philosophy, Seattle University Debbie Cool, PhD Co-founder, Ceptyr
Denise M. Dudzinski, PhD Assistant Professor, Medical History and Ethics, University of Washington, School of Medicine
Annette Dula, EdD Women's Studies, University of Colorado at Boulder
Marybeth Foglia, RN, MA National Center for Ethics in Health Care (VHA)
Kelly Fryer-Edwards, PhD Assistant Professor, Medical History and Ethics, University of Washington, School of Medicine
Sara Goering, PhD Assistant Professor of Philosophy, University of Washington
Suzanne Holland, PhD Associate Professor and Chair of Religious and Social Ethics, University of Puget Sound
Maggie Hooks, MD Harborview Medical Center Helene Starks, PhD, MPH Assistant Professor, Medical History and Ethics, University of Washington, School of Medicine Valerie Ross, MS University of Washington Medical Center
Janelle Taylor, PhD Assistant Professor, Medical Anthropology, University of Washington
Susan Brown Trinidad, MA Researcher, Medical History and Ethics, University of Washington, School of Medicine

Please join us in wishing the WBP a Happy Birthday! -- Anything will do, just leave a comment.

Another reason to watch the Supreme Court this year

The United States Supreme Court has made many headlines this year and will continue to do so for the foreseeable future. Most of the news has been about new judicial appointments and how they may affect the future of the court and, by extension, our country. But now there is another good reason to watch the action on the court this year and an opportunity to see how John Roberts will lead.

In Gonzales v. Oregon, the Supreme Court is being asked to determine whether federal laws regulating drug use trump Oregon's right to legalize assisted suicide. Previously the Court has found that there is no right to assisted suicide but that states have the authority to regulate the practice. US attorney General Alberto Gonzales contends that the US Controlled Substances Act prohibits physicians from prescribing lethal doses of drugs for terminally ill patients, which is exactly what Oregon's Death with Dignity Act allows. This claim is based upon the supposition that such a use of drugs is not a "legitimate medical purpose."

It is unlikely that the dispute will be settled on the basis of whether or not assisted suicide is a legitimate medical practice and more likely that the matter will revolve around the rights of states to legislate practices, such as medicine, within their own state. However, the arguments in this case will help set the stage for further public debate about assisted suicide. And given that three of the justices have themselves battled cancer and that the court just lost Justice Rehnquist to cancer, it is impossible for this issue not to engage the justices on a personal level.

Although the hearing began today in Washington and Justice Sandra Day O'Connor participated in the questioning, it is not clear that she will be voting on this issue. If she leaves before the court rules and the remaining justices are split 4-4, arguments will be held over until O'Connor's replacement joins the bench.

Regardless of who votes or what the outcome is, this is destined to be a landmark decision in the history of the assisted suicide movement.

Marriage a Legal Requirement of Motherhood in Indiana

The State of Indiana proposes that a woman in Indiana seeking to become a mother through assisted reproduction therapy such as in vitro fertilization, sperm donation, and egg donation, must be married (presumably to a man). The draft legislation can be read here. In addition to being married, potential parents must be state certified. This certification is obtained thru a successful state assessment of many things including: intended parent "values," "education," and "personality, including the strengths and weaknesses of each intended parent." A clue as to what will count as a personality strength or weakness may be gleaned from the following other requirement, namely, a "description of the family lifestyle of the intended parents, to include a description of individual participation in faith-based or church activities." I recommend reading the following article, "The Crime of 'Unauthorized Reproduction'," by Laura McPhee that is in draft form here.

Abortion and disability

A new study in the Journal of Pediatrics reports that the number of infants born with cystic fibrosis (CF) has decreased since prenatal genetic tests for the disease became available. CF is not the only condition, of course, for which such tests exist: Down syndrome and other conditions are included in maternal serum screening tests. Positive test results provide would-be parents with a choice: to terminate the pregnancy, or to become parents of a disabled child.

Some have criticized the more and more common practice of terminating these pregnancies as a new form of eugenics, designed to "breed out" common chromosomal abnormalities. Others disagree, saying that it's not "really" eugenics if the state isn't involved in deciding which fetuses get aborted.

At the very least, it raises questions about what we consider to be the normal range of human variation. It also implies value judgments about what kind of life is worth living.

Bill Bennett 's immodest proposal

Remember Bill Bennett? Paragon of virtue (editor, in fact, of the Book of Virtues)? Former Secretary of Education? Former Drug Czar? High-stakes gambler? He's back in the news: apparently he made a remark on a radio show this past Wednesday to the effect that the crime rate could be reduced by selectively aborting "black babies." Mind you, he wasn't recommending this, just . . . . mentioning it.

Everybody with a pulse is condemning his comment. The White House, even, is saying this wasn't, um, "appropriate." This might just be me, but "inappropriate" doesn't seem like the right word for this one. The idea that someone could casually toss off a racist remark about forced abortion is. . . well, kids, what adjective would you use?

Women’s Voices need to be in the Bioethics News

On the FAB listserv yesterday, Joan Callahan drew our attention to the fact that in USA Today’s story introducing the mainstream public to world of bioethics, not one woman is mentioned. She asked for suggestions as to how women bioethicists might be included on whatever list the media have when they need to call an "expert" for ethical insights on news in health care, the life sciences, bioetechnology etc. The mission of the Women’s Bioethics Project to get women’s voices heard in the public debates on bioethical issues. Kathryn Hinsch responded to Joan’s call with the announcement that the Women's Bioethics Project is in the process of compiling a list of women scholars who are willing to talk to the press, conducting press tours to the major media to let them know about this resource, and preparing media training for scholars. She invites scholars to contact Gina Sullivan gsullivan@womensbioethics.org to sign up.

Ed(st) note: For those who aren't familiar with FAB, it's the International Network on Feminist Approaches to Bioethics. More info here.

Generation Rx

Three things came into my e-mail box this morning related to pharma. I teach ethics at a Pharmacy College and I somehow get on pharma news lists. First, Eli Lilly will be putting a “black box” warning on Strattera, a drug used to treat ADHD. This is the loudest possible warning that goes in a drug label. Why the warning? Data show that it causes suicidal thinking in some children and adolescents. This is the same kind of concern there is with Paxil. Second, I get a NYTimes book review for a cleverly named book, Generation Rx by Greg Crister: “baby boomers and their offspring have become the most medicated generation ever, devoted consumers from cradle to grave of every manner of pharmaceutical imaginable - pills that not only cure real diseases, but that also promise, in Mr. Critser's words, to "do everything from guarding us against our excesses of drink, food and tobacco, to increasing our children's performance at school, to jump-starting our own productivity at work, to extending our very time on this mortal coil." Top this off with an invitation to a film called Side Effects, whose www site warns me that before I pop my next pill I should watch their satire about life inside a pharmaceutical company. I think I will go. I need a laugh.

More obstetric horror stories in Africa

Today's NYT carries a story about a heroic Dutch surgeon, Dr. Kees Waaldijk, who is working to help women in Africa recover from obstetric fistulas. With few resources and little help, he estimates he's done 15,000 fistula repair operations over the past 22 years.

An obstetric fistula is what can happen when labor is unsuccessful and there's no doctor standing by to do an emergency C-section: the baby dies, and the woman's urethra and/or bowels are torn, resulting in urinary and fecal incontinence. Given the early age of marriage and pregnancy for some women, combined with the lack of access to medical care, this is a huge problem--and one that has garnered little international attention or funding. (You can also check out the interactive audio/video feature posted with the text story--but do so only if you can handle watching a little bit of the surgery.)

Linda Glenn posted on this same issue here on the blog in June. Wouldn't it be great if the publicity were generating funding for efforts like Dr. Waaldijk?

Connecticut says insurers don't have to pay for infertility treatments in women older than 40

This AP report describes a new law in Connecticut that, while requiring insurance companies to cover the costs of infertility treatment, allows companies to deny this benefit to women older than 40. Similar age-based cutoffs exist in New York (at age 44) and New Jersey (46). There is no federal law requiring insurers to pay for infertility treatments, and only 15 states (including Connecticut) have such laws on the books. Some groups, including RESOLVE: the National Infertility Association, plan to fight the age restriction in Connecticut; they worry that this restriction could be read as a precedent in other states.

Many, many ethical questions around this one: You've got medicalization questions (Is infertility a disease?), health-care resource allocation questions (Should efforts to help would-be parents conceive be categorized as medical treatment? Is infertility more worthy of insurance coverage than, say, mental health parity?), questions about procreative liberty (Given the costs, likelihood of complications, etc., should women over a certain age do everything possible to conceive?), and questions about the nature of motherhood (Does the kid need to have your DNA for you to be a "real" mother?).

Talk amongst yourselves . . .

Ethical Violations

Most public discourse around medical ethics centers on debates and dilemmas such as stem cell research and the infamous Terry Schiavo case. Another type of ethics problem – ethical violations – makes the news but there is typically little discussion beyond the initial outrage and tsk-tsking. The latest scandal to hit the front page regards fraud within the organ procurement and transplant system. This was blatant, obvious abuse involving faking the identity of a recipient in order to move him from fifty-second on the list up to number one. There is little, if any, room to debate whether or not this was wrong. But there is still plenty to talk about. What incentive could be so great that surgeons were willing to directly harm another person (the one who should have received the organ and was subsequently removed from the list because the procurement agency thought she had received it), jeopardize their own program and careers, and tarnish the public’s trust in a national system that depends on the public’s good will to continue operating? Even after reading the news articles I don’t know the answer to that. But since this isn’t the first scandal, real or imagined, involving this system, it’s time to do more than shake our collective heads. When people hear about these scandals and lose faith that the system is a just one, donations of organs drop. And that hurts everyone. Most people don’t know that transplantation is the only field in medicine in which patients have a formal role in making policies. And any member of the public can raise an issue regarding the policies of the United Network for Organ Sharing (UNOS).

Center for American Progress to address bioethical issues

The DC-based Center for American Progress (CAP) kicks off its program to develop a “progressive bioethics agenda” by hosting a panel discussion on Monday, October 3. The panel will address the question, “What are the cutting-edge issues that confront bioethics?” Featured will be prominent bioethicists Art Caplan (University of Pennsylvania), R. Alta Charo (University of Wisconsin at Madison), and Vanessa Northington Gamble (Tuskegee University), with moderator Jonathan Moreno (University of Virginia). Moreno's book, Is There An Ethicist in the House? has just been published. The accomplished professor is also a senior fellow at CAP and a member of the WBP advisory board. Should be an interesting discussion. If you're in the DC metro area, stop by. It's free. And hey, did we mention there would be refreshments?

"Facing the Future" and other bad puns

Recent announcements that two US medical centers are moving forward to attempt the first face transplant has led to headlines full of puns in newspapers across the country. But the announcement is anything but funny to those involved. People who have faces seriously disfigured by accidents are interviewing to become the first face transplant recipient at Cleveland Clinic. Though the surgery has been perfected on corpses, there are many unknowns facing the first live recipient. So many, in fact, that the consent form itself states that informed consent is not truly possible.

The consent form at Cleveland Clinic states:

• Your face will be removed and replaced with one donated from a cadaver, matched for tissue type, age, sex and skin color. Surgery should last 8 to 10 hours; the hospital stay, 10 to 14 days.
• Complications could include infections that turn your new face black and require a second transplant or reconstruction with skin grafts. Drugs to prevent rejection will be needed lifelong, and they raise the risk of kidney damage and cancer.
• After the transplant you might feel remorse, disappointment, or grief or guilt toward the donor. The clinic will try to shield your identity, but the press likely will discover it.

Since the first surgery is considered research, all expenses will be covered by the medical center. Recipients still have many other hurdles to overcome. The first of which is deciding if the potential benefits outweigh the burdens. A plethora of ethical issues are raised by this proposed transplant, some of which have been eloquently identified by Arthur Caplan. Perhaps the most important question is under what circumstances is it ethical to risk a patient’s life in order to push the envelope on a new scientific procedure? This question holds for any new medical development and the same host of questions were asked at the time of the first heart transplant. Today heart transplants benefit many patients and more patients are waiting for them than there are hearts available. So while the pun is bad, the question is real – what future do these people face?

Well, women aren't so different from livestock, right?

You think I'm joking, dontcha? No such luck.

The good news is, apparently the FDA is already rethinking--make that "denying," actually--its brilliant idea of appointing a veterinarian to take the place of Susan Wood (who resigned over the agency's non-decision on Plan B) as head of the Office of Women's Health.

Yes, that's right, a veterinarian. Read more--if you think you can stand it--in the Washington Post.

They might not work better, but they sure do make money!

Today's NYT reports that newer drugs for schizophrenia are no better (ok, maybe a teeny weeny bit better) than older, cheaper drugs. Well, for patients anyway. For drug manufacturers, which have been marketing the heck out of these meds, they are a goldmine: the old treatment costs about $60 per month, compared with up to $450 for one of the newer meds, according to the article.

Sound familiar? You could replace "schizophrenia" with "arthritis pain" and be talking about Vioxx; or you could replace "schizophrenia" with "hypertension" and be talking about the legion of anti-hypertensive meds that don't improve on the performance of plain old diuretics ("water pills").

Where to begin with the ethical issues involved here? Let's see, there's patient safety. . . allocation of research dollars toward diseases for which decent treatment exists, while less common or less sexy conditions are research orphans. . . the effects of direct-to-consumer advertising. . . the effects of pharma marketing on physician prescribing patterns. . .

Miracle mitochondria or designer babies?

The United Kingdom’s genetics watchdog agency, the Human Fertilisation and Embryology Authority (HFEA), has granted permission to a team of Newcastle University scientists to create a human embryo that will have genetic material from two mothers.
The BBC reports that “The scientists will transfer the pro-nuclei – the components of a human embryo nucleus - made by one man and woman - into an unfertilized egg from another woman.”

The team and its supporters attribute the value of the research to the potential prevention of the maternal passing of certain genetic diseases to their unborn babies. The relevant genetic diseases, which are known as mitochondrial, arise from DNA found outside the nucleus and are inherited separately from DNA in the nucleus. Although the resulting egg would never be allowed to develop into a baby, if it did, the offspring would still resemble their mother and father because the mitochondrial DNA do not dictate things like hair color.
Mitochondria produce most of the energy that people need to grow and live. Organs such as the heart, brain, liver, kidney are particularly dependent on well functioning mitochondria. One unique feature of mitochondria is that they have their own DNA, which is inherited from the mother only. Faulty maternal DNA puts children at risk of developing a mitochondrial disease that can damage the cells of the brain, heart, liver, kidney and skeletal muscles and confine sufferers to a wheelchair. At present there is no known cure.
Some groups have expressed concern regarding the HFEA approval to proceed with the research. The potential scientific breakthroughs seem to evolve at a rate that surpasses accompanying decisions regarding ethics. Pro-life campaigners fear the decision to approve the research represents an unacceptable step towards the creation of "designer babies".
Professor John Burn, from the Department of Clinical Medical Sciences at Newcastle University, claimed such fears and criticisms to be unfounded. Professor Burn said that technically a baby could be born with two mothers - the DNA from the egg donor and the DNA from the mitochondrial donor. The ethical implications may resemble those regarding a surrogate mother donating an egg or carrying the intended parent's child that was conceived through IVF treatment - a process itself that once generated an abundance of controversy.
[thanks Ana Lita]