Friday, September 30, 2005
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?
Ed(st) note: For those who aren't familiar with FAB, it's the International Network on Feminist Approaches to Bioethics. More info here.
Wednesday, September 28, 2005
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?
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 . . .
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).
Monday, September 26, 2005
Wednesday, September 21, 2005
Recent announcements that two
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?
Tuesday, September 20, 2005
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.
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. . .
Thursday, September 15, 2005
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]
[thanks Ana Lita!]
Wednesday, September 14, 2005
Studies in a recent edition of Science by Bruce Lahn of the
Given that we don’t know what the genes do and that their evolution is ongoing, this may not have much of a practical impact on most of us. What it does do, however, is suggest that we need to think about this finding – that evolution may still be ongoing in humans – in light of some current topics of public discourse. One such topic is the long standing debate about what is and is not within “normal” psychological parameters. If our brain is still developing it lends credence to the argument that it is better to view differences in human makeup merely as differences as opposed to attaching normative value to them. Another topic related to genetic evolution is the still futuristic notion of genetic engineering in humans. While genetic engineering is most widely applied in agriculture, there is much speculation about how this field may benefit or enhance humans. What these studies remind us is that we still need to factor in the influence of evolution.
Friday, September 09, 2005
Turns out some diseases, such as muscular dystrophy, are triggered by defective genes in the maternal mitochondrial (extra-nuclear) DNA. By transplanting the healthy nucleus into a new, healthy egg, researchers hope they can eliminate these diseases--while still maintaining the "real parenthood" of good old Mom and Dad.
Missing in the dicsussion is the question, where in the world will all these eggs come from?
Read more here.
Regardless of one's stance on abortion, the instrumental subpoena of women's (supposedly confidential) medical records -- especially in a time of increased privacy protection and regulation around health care information in general -- ought to raise concerns about privacy and civil rights.
(The very similar efforts of former US Attorney General John Ashcroft, which were intended to bring down Planned Parenthood clinics, were unsuccessful.)
Thursday, September 08, 2005
Wednesday, September 07, 2005
No dilemma in bioethics is a simple one. The issue of pesticide research readily demonstrates that even characterizing a debate as “two-sided” is often an oversimplification. Today the EPA announced that it will bar data from pesticide studies involving children and pregnant women. Protecting a vulnerable population from risk seems like a winning position. However, the impact of such a decision may, in the end, put these populations at even greater risk. As “safe” limits of pesticide exposure are studied and regulated, lack of data regarding the effects on children and pregnant women may mean that the legally acceptable levels are not really safe for them at all. But deciding to accept research using children and pregnant women is also not a simple matter. One recently proposed study that would look at the effect of pesticide exposure on young children had to be shut down when claims were made that it was targeting low-income, less-educated families and that the incentives were so high as to be considered coercive. Another criticism of the study was that the two year research time frame was not sufficient to find negative long term health effects such as developmental delays, cancers and puberty/hormonal disruptions. The history of pesticide testing reveals other thorny issues including problems involved in finding control groups when examining data obtained from observing the health outcomes of children who were exposed to pesticides in their natural environments.
Monday, September 05, 2005
Addendum (posted Sept 6) - And please let's not forget about our companion animals -- the dogs and cats that have been displaced by Hurricane Katrina -- donate now at Humane Society of the United States.
Friday, September 02, 2005
In the face of such an unprecedented natural disaster in the US, how can we, in the field of bioethics, respond? Certainly, this type of situation can bring out the worst of humanity, as witnessed by the looting and rioting reported; but it can also bring out the best of humanity as we gather our resources together and volunteer our time and efforts. We must respond with kindness and love, and all that entails -- I forget who said that "Our acts of kindness warm the coldness of people's lives." And whether it be through donations to the American Red Cross Hurricane Relief or prayers or donating blood, our response will be a reflection of how we choose express our humanity.
[Thank you and welcome to Ana Lita, one of our new guest bloggers! Ana, who holds a Ph.D. in Applied Ethics and Social Philosophy and an M.A. in Sociology and speaks five languages, is Director of the IHEU-Appignani Humanist Center for Bioethics at the United Nations in New York City. ]
Thursday, September 01, 2005
The NYT article notes: "An estimated 6,000 children in the United States have the specific condition for which the F.D.A. approved the drug, although some doctors expect Increlex to be more broadly prescribed to children with less severe growth abnormalities."
This is yet another variation on the "treatment vs. enhancement" debate. So at what point--if any--ought short stature be considered a disease? Data suggests that tall folks do, in fact, have social and economic advantages over the vertically challenged: but does that make it a disease or a disability? The larger question--which applies to many other topics, incluindg the fight over whether Ritalin is treating a genuine medical problem or being used to bring the classroom behavior of little boys under control--is whether it's a good idea to medicalize characteristics that are part of the normal range of human variation.
It's also worth asking, who benefits when we decide to label something a disease?