blog.bioethics.net

Inside the lives of surrogates

Newsweek's cover story this week is about the experiences of women who gestate babies for others. Here's a clip from the piece by Lorraine Ali and Raina Kelley:

Very little is understood about the world of the surrogate. That's why we talked to dozens of women across America who are, or have been, gestational carriers. What we found is surprising and defies stereotyping. The experiences of this vast group of women—including a single mom from Murrietta, Calif., a military spouse from Glen Burnie, Md., and a small-business owner from Dallas—range from the wonderful and life-affirming to the heart-rending. One surrogate, Scanlon, is the godmother of the twins she bore, while another still struggles because she has little contact with the baby she once carried. Some resent being told what to eat or drink; others feel more responsible bearing someone else's child than they did with their own. Their motivations are varied: one upper-middle-class carrier in California said that as a child she watched a family member suffer with infertility and wished she could help. A working-class surrogate from Idaho said it was the only way her family could afford things they never could before, like a $6,000 trip to Disney World. But all were agreed that the grueling IVF treatments, morning sickness, bed rest, C-sections and stretch marks were worth it once they saw their intended parent hold the child, or children (multiples are common with IVF), for the first time. "Being a surrogate is like giving an organ transplant to someone," says Jennifer Cantor, "only before you die, and you actually get to see their joy."

(read the rest)

The joints where industry and orthopedists meet

Scott Haig, an orthopedist, writing in Time about the conflicts of interest that surfaced at the recent annual meeting of the American Academy of Orthopaedic Surgeons:

The DOJ's slap was felt acutely by everyone at the convention. No more free dinners, shoulder bags, flashlights and pens. Way fewer models in leotards draped across operating tables and traction equipment. A new ruling requires every research presentation to begin with full disclosure of all monetary relationships the speaker has with any company. Every single fully trained doctor I heard speak was getting paid by a company; many of the bigger-name doctors were getting paid by three or four. How much money was still the subject of gossip — the exact amount is not required to be broadcast in these podium confessionals. The DOJ has, however, ordered companies to list the doctors in their employ, as well as the amounts paid them, on their websites. Judging by those figures, it adds up to plenty. And it got our attention at AAOS. Some doctors thought it immoral; others lamented the doubt it cast on the integrity of research. But I think most just wanted in.

Ultimately, though, Haig writes that he's optimistic the money doesn't get in the way of medical fact.

-Greg Dahlmann

The UK's debate over, well, almost everything

The UK has been involved in a rather intense political discussion about making changes to the country's Human Fertilisation and Embryology Authority bill. Stem cells, chimeras, cloning and more all fall under this law. Prime Minister Gordon Brown announced this week that there would be a "free" vote on the bill in May (MPs would be allowed to vote against the direction of their party). Looking ahead to that vote, the Guardian's Aida Edemariam has put together a comprehensive breakdown of the issues and where various interests stand on them. Here's a clip:

The human fertilisation and embryos bill is among the most emotive and divisive bills to have come to parliament since its decision to enter the Iraq war. Cabinet ministers - until Gordon Brown allowed, this week, a free vote - indicated they might have to resign rather than vote for it. Rationalists may claim that the bill is simply catching up with the scientific developments of the past few years, but where the very tissues of human life are concerned, nothing is that simple. The science involved is so advanced that, like it or not, the nitty-gritty of the bill rubs up against some of the most fundamental philosophical questions there are: at what point can life be said to exist? What choices can be exercised at that point, and who gets to exercise them? Should we go to infinite lengths to cure illness, or is it sometimes more ethical to accept defeat? What does it mean to be a parent? What if there is only one parent? What if there are three? What does it mean to be a child? What does it mean to be human?

-Greg Dahlmann

A pregnant father

While it's not quite the situation some have speculated will one day come about, a transgender man in Oregon says he's pregnant. Writing in the April issue of The Advocate, Thomas Beattie says the reception to his pregnancy has been awkward and chilly:

Our situation sparks legal, political, and social unknowns. We have only begun experiencing opposition from people who are upset by our situation. Doctors have discriminated against us, turning us away due to their religious beliefs. Health care professionals have refused to call me by a male pronoun or recognize Nancy as my wife. Receptionists have laughed at us. Friends and family have been unsupportive; most of Nancy’s family doesn’t even know I’m transgender.

This whole process, from trying to get pregnant to being pregnant, has been a challenge for us. The first doctor we approached was a reproductive endocrinologist. He was shocked by our situation and told me to shave my facial hair. After a $300 consultation, he reluctantly performed my initial checkups. He then required us to see the clinic’s psychologist to see if we were fit to bring a child into this world and consulted with the ethics board of his hospital. A few months and a couple thousand dollars later, he told us that he would no longer treat us, saying he and his staff felt uncomfortable working with “someone like me.”

In total, nine different doctors have been involved. This is why it took over one year to get access to a cryogenic sperm bank to purchase anonymous donor vials, and why Nancy and I eventually resorted to home insemination.

-Greg Dahlmann

(via)

Earlier on bioethics.net:
+ Podcast: Talking about male pregnancy

Art Caplan at MSNBC.com: Transplant list numbers raise doubts

Over at MSNBC, Art writes about the recent news that the UNOS transplant list might be overstating how many people are waiting for transplants:

Are we being sold a bill of goods about the number of patients waiting for transplants in the United States? There is reason to think so.

The United Network for Organ Sharing (UNOS) is the Richmond, Va.-based organization that holds the federal contract for distributing organs to those awaiting transplants in the U.S. UNOS says there are about 98,000 people who need transplants. But, a recent story in the Washington Post shows that about one-third of those are actually not eligible for an organ transplant on any given day.

What is going on? If UNOS and the transplant community are inflating the numbers to make the shortfall in organs seem worse than it really is, they risk losing the trust of the American people. That trust is the ethical foundation for organ donation in this country.

If one checks the UNOS waiting list for people who are "inactive," or ineligible to receive an organ, some startling facts emerge. More than 7,000 patients with renal failure have been on the ineligible list for more than two years. So have hundreds of others with a failing heart, liver or pancreas. Although some patients awaiting transplants are going to bounce on and off the list because of other chronic health problems, the number who remain inactive for two years or more cries out for some sort of explanation.

Some of the reasons patients become inactive on the UNOS list make sense. Some patients take themselves off the list. Others cannot be found for one reason or another. Some need to lose weight in order to survive a procedure, while others are temporarily too sick.

But there are large numbers of people sitting inactive on the list because their medical work-up is not complete, or because of insurance or paperwork issues. These are not such good reasons.

(read the rest)

The 5 most popular Bioethics News stories from the week of March 17

Here are the most popular Bioethics News items from last week based on average clicks per day:

1. Ob/Gyn guidelines stir up ethics debate
(NPR) An opinion released by the ethics committee of the American College of Obstetricians and Gynecologists states that physicians should be required to refer patients seeking abortions or other procedures to another provider if the physician has a moral objection.  The Bush administration has now gotten involved, saying such a rule could violate federal law.(See NPR's follow-up.)

2. Concerns about vaccine opt-outs
(NYT) In many parts of the country, the number of parents opting to not have their kids vaccinated has grown significantly.  Experts worry the trend may be endangering public health.

3. New Jersey considers mandated coverage
(NYT) A bipartisan group of state legislators has presented a plan that would require all residents to have health coverage.  The proposal would redistribute already-existing funds to cover costs, though there are doubts that would actually fund the program.

4. Med students flock to dermatology
(NYT) With its relatively easy working schedules and high pay, dermatology is drawing many of the best and brightest medical students.  That has some worried that other important specialties are being drained of talent.

5. Balancing cost and effectiveness
(NYT) Evidence that a very expensive biotech drug may treat Gaucher's disease at much lower doses has prompted a debate about whether the current recommended dose is the result of medical necessity or profit-seeking.

The top 5 from two weeks ago.

The death row inmate as organ donor

In a recent issue of Good Magazine, Graeme Wood argues that we should explore the possibility of allowing death row prisoners to, essentially, die by organ donation:

The real objection to the Mayan Protocol [death by organ donation] is aesthetic. Many want executions to remain grim affairs, and don’t want a condemned man to cloak his squalid final hour in the raiment of altruism. “To get the organs, you really have to take them right away, and that would change the mood from an execution to a sympathetic harvest,” [Art] Caplan says. “Frankly, the families of many victims probably don’t want that.”

Plus, the medicalization of execution would creep everyone out. We like the state to kill neither too clinically (as with a multiple organ transplant) nor too medievally (by chopping off the head). Better, for the sake of all but the condemned and the people dying for his organs, to find a Goldilocks-style middle ground in execution—neither too controlled nor too chaotic.

But being creeped out is the price of living in a society that kills its criminals. If organ harvesting would make executions uncomfortably like human sacrifice, perhaps that’s because our death chambers are already gory enough to make anyone but a Mayan high priest pale.

-Greg Dahlmann

The Onion on organ "donation"

Anonymous Philanthropist Donates 200 Human Kidneys To Hospital

-Greg Dahlmann

Symposium to examine flu pandemic prep and pharmaceuticals

Seton Hall Law School, along with the Seton Hall Law Review, is hosting a public symposium later this year about pandemic flu prep. Here's how they describe the event:

Panels will explore issues related to the development and approval of vaccines and antiviral drugs, both before and during a pandemic; the allocation of vaccines and antiviral drugs in situations of scarcity; pricing issues; and liability and compensation for drug-related injuries. There will be a special emphasis on issues related to international equity.

And they're looking for panelists.

The 5 most popular Bioethics News stories from the week of March 10

Here are the most popular Bioethics News items from last week based on average clicks per day:

1. Parents of Ashley X: intervention has been successful
(CNN) Parents say their daughter, now 10, appears to have stopped growing at 4 feet 5 inches and 63 pounds.

2. Debate over cognitive enhancement in academia
(NYT) A recent Nature article about the use of cognitive enhancers among faculty has prompted heated discussions that are starting to mirror debates about doping in sports.

3. Study: one in four teenage women has STD
(NYT) Researchers from the CDC reported that almost half of the African-American teens in the survey were infected with an STD. The most common infection among all the women was HPV.
(blog.bioethics.net post about this story)

4. Surrogacy business grows in India
(NYT) Among the reasons India is becoming a center for international surrogacy: talented medical professionals, little regulation, and lower prices.

5. Jack Kevorkian plans run for Congress
(AP) "Dr. Death" plans to run in a Michigan district just outside Detroit. He says Washington needs "some honesty and sincerity." Kevorkian is still on parole after serving more than eight years in prison for second-degree murder.

Art Caplan on steroids and sports

Over at Science Progress, Art looks at some of the arguments against -- and for -- the use of performance-enhancing drugs in sports. Here's a clip:

“Professional” wrestling has many fans in North America, Mexico, Asia and Europe. Its athletes can do impressive feats involving agility and strength. They are very strong certainly due to steroids. But no one seriously thinks that pro wrestling is a sport—despite having all the external accoutrements. It is a steroid-infused exhibition. [British bioethicist John] Harris might say “well redefine the sport—there is nothing intrinsically sacrosanct about effort leading to performance.” Except that there is. The definition of sport is human effort based on talent and training leading to performance. This is an activity that need not be preserved but if it is to be preserved—and most baseball, track and cycling fans have an exquisite sensitivity to history—then drugs, huge shifts in equipment, and competing in venues that distort the value of effort, e.g., very high altitudes, won’t work.

So at least in sports, if not on Wall Street or in the classroom, it is how the performance is achieved and not just the performance that is valued. That link between human effort and agency and output may be contingent. But it is surely definitive of what sport is.

About that study of teens and STDs

Recently the results of a study conducted by the CDC splashed across news headlines: "1 in 4 teen girls has an STD." Many of the major news networks went on to include a handful of other statistics from the study, which were released on Tuesday at a press conference in Chicago.

Amidst the lock-up-your-daughters frenzy of these bold-faced headlines, nobody seemed to question why only teenage girls were selected for a study regarding STDs and not teenage boys as well. Curiously, there also seemed to be no question of the puzzling statistic, repeated by every major news outlet, that nearly half of the African-American girls in the study had at least one STD.

The study may have, understandably, focused on girls as opposed to boys because STDs tend to manifest themselves more severely in women than they do men. The study might have been an attempt to bring needed attention and funding to the area of women’s health. The results may have been released in the manner of a press report to trigger awareness and action in medical communities.

However, given that only 838 girls were surveyed in this study, with no further details provided regarding the demographics of this population, drawing broad generalizations about teenage girls based on this study alone is dangerous, and indeed smacks of bias. Women, particularly minority women, have long been unjustly targeted as populations responsible the spread of STDs, and thus populations that must be “controlled”. This flawed theory is only encouraged by selective statistics and headlines such as the one above. Though the numbers may draw attention to the problem of STDs, they do so in a manner that unequally assigns blame. Given that it takes two to tango…

-Roopali Malhotra

January 2008 AJOB Neuroscience

In case you missed it, the January issue of AJOB Neuroscience is now online. It features two target articles:

Neuroimaging Techniques for Memory Detection: Scientific, Ethical, and Legal Issues
by Daniel V. Meegan

A Leg to Stand On: Sir William Osler and Wilder Penfield's "Neuroethics"
by Joseph J. Fins

As always, each target article is accompanied by a group of peer commentaries. January's issue also features the editorial "Women's Neuroethics? Why Sex Matters for Neuroethics" by Molly C. Chalfin, Katrina A. Karkazis, and Emily R. Murphy. The full text of the commentary is open access. Here's a clip:

Why should we pay special attention to the neuroscience of sex differences? Perhaps the most important reason is that this work will prove important for contested ideas about the so-called nature of human nature. One only need look to the Larry Summers debacle in 2005 to see how contentious the topic is and how far-reaching its effects may be. Although the question of how and why women and men are different is an old one, neuroscience's use of cutting-edge technology - coupled with a growing reliance on science to shed light on complex human behavior - increases the likelihood that this work will leap to the forefront of public discussion and debate about social equality.

This issue also includes the essay "The Prospects for Neuro-Exceptionalism: Transparent Lies, Naked Minds" by Robert Wachbroit. And that, too, is open access. Here's a clip:

In dozens if not hundreds of science fiction movies and stories, a machine is used at some point to determine what someone is really thinking. Does she really remember that terrible event? Is she really telling the truth? Does she really love her husband? What was she really thinking the moment of the crime? The hold of this theme on the popular imagination quite likely underlies some of the current anxiety about neuroscience. Will it provide us with a significantly different kind of information about people's thoughts and feelings, like those science-fiction machines? Will it yield accurate and reliable conclusions about what is on, or in, a person's mind, regardless of her intention or willingness to share that information? Will it pose a special threat to privacy?

These concerns are provoked by actual developments in neuroscience and technology, particularly in brain imaging. We can now see what people's brains "look like" when people are performing various cognitive functions and displaying various emotions, and we can observe striking differences in the brain images of people differing in age, gender, and psychiatric diagnosis. Yet, while these images may seem to reveal much that was previously concealed, some of the questions we just raised are vague and unclear. What do we mean by "significantly different kind of information"? Is that not a matter of degree? What constitutes a "special threat to privacy"? Does that not that depend on cultural expectations and current protections?

We're now officially living in the bizarro world

First, Eliot Spitzer, supposed paragon of public morality, gets nabbed for hiring prostitutes. And now this: Jack Kevorkian plans to run for Congress.

Yep. He plans to run in the same district outside Detroit where he was convicted of second-degree murder. He's out on parole (as long as he doesn't talk about how someone might commit suicide). Kevorkian's plans are a little (OK, a whole lot) surprising if only because it seems he's found a profitable second career as a speaker. Kevorkian recently got $50,000 to speak at the University of Florida.

The Ethical Implications of Synthetic Life Symposium

Mycoplasma mycoides created at the Venter Institute by swapping a new genome into Mycoplasma capricolum

+ Jaydee Hanson, policy director for the International Center for Technology Assessment

+ Jef Boeke, professor of molecular biology and genetics at Johns Hopkins

+ Gautam Mukunda, a political scientist from MIT

+ Glenn McGee, director of AMBI

UMBC's Stephen Freedland will moderate, with introductions from UMBC's Andrea Kalfoglou.

photo: J. Craig Venter Institute

The five most popular Bioethics News stories from the week of March 3

Here are the most popular Bioethics News items from last week based on average clicks per day:

1. The genome as luxury item
(NYT) Personal genome sequencing is starting to draw the attention of the very rich. The current price tag for the service is about $350,000.

2. Placebos: you get what you pay for
(NYT) Behavioral economists report in JAMA this week that patients said a placebo worked better when they were told it cost more.

3. Prosecutors: Lilly hid risk of Zyprexa side effects
(NYT) The State of Alaska has sued Lilly seeking compensation for Medicaid patients who developed diabetes while taking the schizophrenia medication. Federal prosecutors and other states are also investigating the company's conduct regarding the drug's marketing.

4. Is it enough if a cancer drug provides a better, but not longer, life?
(Boston Globe) The FDA approval of Avastin for breast cancer has some asking whether it's worth it to spend thousands of dollars on a drug that hasn't been shown to extend patient lives -- though it does seem to slow tumor growth.

5. Malaria vaccine study will infect volunteers with the parasite
(Scientific American) Researchers say they'll only use a strain of malaria that responds to existing drugs. They say the testing in the US will help them better pick vaccine candidates to test in children in Africa.

The debate over academic doping

In Sunday's NYT, Benedict Carey looks at the discussion that has followed that Nature commentary about professors who use cognitive enhancers. Here's a snip:

In his book “Our Posthuman Future: Consequences of the Biotechnology Revolution,” Francis Fukuyama raises the broader issue of performance enhancement: “The original purpose of medicine is to heal the sick, not turn healthy people into gods.” He and others point out that increased use of such drugs could raise the standard of what is considered “normal” performance and widen the gap between those who have access to the medications and those who don’t — and even erode the relationship between struggle and the building of character.

“Even though stimulants and other cognitive enhancers are intended for legitimate clinical use, history predicts that greater availability will lead to an increase in diversion, misuse and abuse,” wrote Dr. Nora Volkow, director of the National Institute on Drug Abuse, and James Swanson of the University of California at Irvine, in a letter to Nature. “Among high school students, abuse of prescription medications is second only to cannabis use.”

But others insist that the ethics are not so clear, and that academic performance is different in important ways from baseball, or cycling.

“I think the analogy with sports doping is really misleading, because in sports it’s all about competition, only about who’s the best runner or home run hitter,” said Martha Farah, director of the Center for Cognitive Neuroscience at the University of Pennsylvania. “In academics, whether you’re a student or a researcher, there is an element of competition, but it’s secondary. The main purpose is to try to learn things, to get experience, to write papers, to do experiments. So in that case if you can do it better because you’ve got some drug on board, that would on the face of things seem like a plus.”

She and other midcareer scientists interviewed said that, as far as they knew, very few of their colleagues used brain-boosting drugs regularly. Many have used Provigil for jet lag, or even to stay vertical for late events. But most agreed that the next generation of scientists, now in graduate school and college, were more likely to use the drugs as study aids and bring along those habits as they moved up the ladder.

Earlier on blog.bioethics.net:
+ Is your professor juicing?

Is being infected with malaria worth $2000?

If it is, and you live in the Seattle area, there was some very exciting news last week. The Seattle Biomedical Research Institute would like to trade that two grand for the time and inconvenience of having malaria-carrying mosquitos held up to your arm until they bite you. Here's more from an AP story:

Symptoms usually develop within nine to 11 days, and volunteers will be treated for malaria when the first parasites show up in their blood. The treatments last three days.

In the related project at Walter Reed, where hundreds of people have been exposed to the malaria virus, not one person has gotten seriously ill, said Dr. Patrick Duffy, head of the Seattle Biomedical Research Institute's malaria research programs.

The compensation is for time and inconvenience and the amount must be approved by an independent panel before the study begins.

"It's a sensitive issue. They want to make sure it's fair ... but not so much that somebody would say, 'I can't turn down this opportunity'," Duffy said.

Testing subjects will get no sicker than someone with the flu and most won't even miss a day of work after being exposed to malaria and then treated, he said. They will need to stay in a downtown hotel for a few days and get daily medical tests, but can leave their room during the day because treatment for the virus would begin before it becomes contagious.

(read the rest)

Intro to Islamic bioethics

Over at the Wired Science blog, Brandon Keim asked a few Muslim bioethicists about how Islamic views of biotechnology compare or contrast with Western approaches. Here's a snip:

Would it be a bit too easy and reductionist, I asked, to then say that Muslims are less inclined to take an absolutist position and instead base their judgments by weighing the risks and benefits of each case? Replied [Brown University anthropologist Sherine] Hamdy,

"Yes, that is generally how Islamic law characterizes itself, as one sensitive to contingencies; as taking the social context into account (see for example, the intro to Harvard scholar Baber Johansen's book Contingency in Sacred Law.)

Of course there are always people who are extremists and who take absolutist positions -- but as a scholarly orthodox tradition, Islamic scholars have generally incorporated social contingencies into their opinions about the permissibility of modern practices, especially with the legal tool of "maslaha" -- which is a calculus of weighing particular benefits against risks (measured both socially and spiritually); the current Grand Mufti of Egypt, Shaykh Ali Gumaa is an example of a scholar who is trying to educate ordinary Muslims against the dangers of absolutism because the context is always so important."

-Greg Dahlmann

Cloning is cheaper when you buy in bulk

Odd info nugget from an AP story about breeders of fighting bulls turning to cloning: cattle cloning at ViaGen in Austin gets cheaper the more clones you buy. It's $17,500 for the first calf, $15,000 for the second, $12,500 for the third and $10,000 a calf when you buy four or more.

There wasn't any mention of double coupons, though.

-Greg Dahlmann

One of medical school's lessons: how to be less empathic

A study published this month in Academic Medicine looked how medical school affects levels of "vicarious empathy" in students, or as the paper is titled, "Is There Hardening of the Heart During Medical School?"

The short answer: it looks like it. The authors report that students' vicarious empathy declines significantly after the first and third years. Here's how the authors explain the post-first year drop:

For all the students studied, the significant decrease in vicarious empathy that occurred after completing the freshman year of medical school may have resulted from a high degree of student stress and anxiety caused by the students' competitiveness and desire to overachieve on examinations. Additional stressful factors may include the media's presentation of doctors as heroes, which helps create a skewed image of the ideal physician for entering freshmen medical students. As the students progressed through their freshman year, they probably realized there is a mismatch between the media representation and reality.

And that post-third year decline? The authors attribute it to seeing patients in the clinic, especially "challenging patients" in "university tertiary care centers."

(read the rest)

Which luxury: gene sequence or car?

From Amy Harmon's piece in NYT about how genome sequencing is becoming a luxury item:

“I’d rather spend my money on my genome than a Bentley or an airplane,” said Mr. Stoicescu, 56, a biotechnology entrepreneur who retired two years ago after selling his company. He says he will check discoveries about genetic disease risk against his genome sequence daily, “like a stock portfolio.”

But while money may buy a full readout of the six billion chemical units in an individual’s genome, biologists say the superrich will have to wait like everyone else to learn how the small variations in their sequence influence appearance, behavior, abilities, disease susceptibility and other traits.

“I was in someone’s Bentley once — nice car,” said James D. Watson, the co-discoverer of the structure of DNA, whose genome was sequenced last year by a company that donated the $1.5 million in costs to demonstrate its technology. “Would I rather have my genome sequenced or have a Bentley? Uh, toss up.”

He would probably pick the genome, Dr. Watson said, because it could reveal a disease-risk gene that one had passed on to one’s children, though in his case, it did not. What is needed, he said, is a “Chevrolet genome” that is affordable for everyone.

(Thanks, Jim!)

photo: Bentley.com

The five most popular Bioethics News stories from the week of Feb 25

Here are the most popular Bioethics News items from last week based on average clicks per day:

1. Public warms to the phrase "socialized medicine"
(LA Times) A recent survey reports that the phrase no longer conjures negative images for many Americans. Except Republicans -- 70 percent of those polled still think "socialized medicine" would make the health system worse.

2. Ads with your health records
(USA Today) Google says its health records service won't initially include ads, but didn't rule them out in the future. One analyst says advertisers would pay "absurd amounts of money" for such ad space.

3. Hearings begin in organ harvesting case
(New York Times) A California doctor is accused of speeding the death of patient so a transplant team could retrieve the patient's organs. The president of the American Society of Transplant Surgeons called the case unprecedented.

4. First of three Wisconsin stem cell patents upheld
(AP) The trio of patents, held by the Wisconsin Alumni Research Foundation, cover human embryonic stem cells and the techniques used to isolate them. The patent office has yet to rule on challenges to the other two patents.

5. Jarvik's Lipitor ads canceled
(New York Times) Pfizer is pulling them after Congressional scrutiny focused on the fact that Robert Jarvik is not a licensed medical doctor. Apparently, he's not a kayaker, either -- even though the ad shows him rowing one.