the Electric Monk

Josef Fritzel was convicted today and sentenced to life in prison by an Austrian court. Fritzl trapped his own daughter in a basement “dungeon” for 24 years, raping her 3,000 times over a 24-year period. (That works out to about twice a week.) As the BBC notes, “the story of Josef Fritzl has been described as one of the worst cases in Austria’s criminal history.” But is it?

Whoever thinks that Fritzl is even close to the worst criminal in Austrian history clearly hasn’t heard about Heinrich Gross, an Austrian doctor who tortured and killed hundreds of children–not to mention, of course, Austrian painter and memoirist Adolf Hitler. But of course I agree that Fritzl’s crime is horrible. In addition to enslaving and raping his daughter for a quarter century, he admits to letting one of the resulting children die in the dungeon due to illness, rather than seek medical attention and risk being caught.

But what if Fritzl had committed the very same crimes, trapping a stranger rather than his daughter? The aspect of this case that has generated so much attention–and why some consider it “one of the worst cases in Austria’s criminal history”–is that it involves the taboo of incest.

Consider a thought experiment posed by moral philosopher Jonathon Haidt: “Julie and Mark are brother and sister. They  are traveling together in France on summer  vacation from college. One night they are  staying alone in a cabin near the beach.  They decide that it would be interesting and  fun if they tried making love. At very least  it would be a new experience for each of  them. Julie was already taking birth control  pills, but Mark uses a condom too, just to  be safe. They both enjoy making love, but  they decide not to do it again. They keep  that night as a special secret, which makes  them feel even closer to each other. What  do you think about that, was it OK for them  to make love?” (PDF file of Haidt’s article.)

What is your answer to Haidt’s question? Is the act of incest, in and of itself, morally wrong?
–John Bohannon

“Professing Ethics at the Universities of Sodom and Gomorrah.” In this provocatively titled talk, Leon Eisenberg, Professor Emeritus at Harvard Medical School, posed an equally provocative question: “What is our responsibility as members of the university community when we observe the university engaged in unethical activity?” Universities have multiple goals–like raising money and remaining independent–he pointed out to the 2009 National Undergraduate Bioethics Conference, so there are bound to be conflicts. But if academics avoid rocking the boat, injustices can fester. Eisenberg told five vignettes in which students or faculty took an ethical stand.

1. Students vs. university–students win. He recounted a case where Baylor college was bribing incoming freshmen to retake their SAT scores in order to boost Baylor’s national ranking. A brave reporter from the student newspaper broke this story and the Baylor administration publicly apologized for its actions.

2. Faculty vs. government–faculty win (at least morally). In 1914, at the beginning of WWI, Albert Einstein became politically active by being one of only a few to sign a letter renouncing the war. This action could have ended his scientific career as it was a full six years before he was awarded the Nobel Prize. History remembers Einstein’s stand.

3. Students vs. society–society wins (sadly). Eisenberg relayed a personal account of his own work with a student group called AIMS–the Association of Interns and Medical Students–while a student at the University of Pennsylvania school of Medicine in the 1940’s. The group was advocating for better working conditions for medical interns and universal access to healthcare. The group became a target of McCarthyism, depicted as socialists, and buried.

4. Students and faculty vs. society–students and faculty win (and so does society). In the mid 1960’s, there was only one “negro” medical student at the University of Pennsylvania and less than 3 percent of all medical students in the US were black–most of them at the two historically black medical schools Howard and Meharry. In 1968, right after the murder of Martin Luther King, the students and faculty at Harvard Medical School advocated for an affirmative action program to increase black enrollment at the school. A committee of 9, including Eisenberg, radically proposed that Harvard admit no fewer than 15 black students the following year. The fear was whether or not there were even 15 black students in the U.S. qualified to attend Harvard Medical School. The administration got behind the students and faculty and made a concerted effort to recruit. Applications from black students went up 6-fold and by 1973, Harvard more than met its goal. Eisenberg proudly announced that Harvard Medical School has now graduated more than 1000 African Americans. “Harvard Medical School used to be all white and gray,” he said. “Now it’s in technicolor.”

5. Students vs. Big Pharma–stay tuned! Eisenberg talked about the current move among Harvard medical students to take on the conflict of interest that exists because of medical faculty members’ ties to pharmaceutical companies. While this issue has been a priority for the American Association of Medical Colleges for some time, Harvard has lagged behind many of other medical schools in weeding out Big Pharma’s influence over teaching, research, and clinical practice at the university.

Students frequently have more power than they realize to make positive changes to their institutions. Why, for example, do you think that China shut down the universities during the 1989 democratic uprisings? Are you putting your future career at risk if you speak out against injustices within your institutions? Absolutely. But, Dr. Eisenberg ended his talk with a challenge to the students in the audience: “If you don’t do it, it won’t happen.”

What do you think are the ethical issues festering on university campuses? What should students and faculty take a stand on that they are currently keeping quiet about?

–Andrea Kalfoglou

After the final dinner of the NUBC conference, Peter Singer spoke about global poverty. (There was a vegan option on the menu, of course.) The world’s most famous bioethicist came full circle to the idea that launched his career. His 1972 article “Famine, Affluence, and Morality” challenged readers with the following tale:  You come across a child drowning in a pond. You can easily wade in and save the child, but you will have to sacrifice your brand new expensive shoes. What should you do? “If you just walk on by,” Singer told us last night, “we consider you a monster.” But is that really so different from what you’re doing right now by not helping any of the millions of children around the world dying needlessly of poverty-related illnesses?

Singer has a new book out–The Life You Can Save–and a new strategy for convincing affluent people to help the poor: Encourage everyone to give a very small amount of their disposable income. Singer admits that the amount is far less, according to his theory, than people are morally obliged to give. “But as a utilitarian,” he said, his goal is to obtain the best outcome possible. Ask people to be saints, and only a few will step forward. Ask them to be slightly generous and far more people will give, adding up to a far greater total effect. At the time of this writing, his website lists 1,570 people who have pledged to donate the charity he requests, which is adjusted according to the donater’s income. He even provides a global map of where these generous people reside. (It’s an impressive distribution.)

After the talk, I asked Singer about his wrangle with Stephen Colbert. “For the record, how much of the cost of your book is going to save the world’s poor?” Singer’s answer would have been a good reply to Colbert’s jab. “100% of the profits I receive from the sale of the book go to charity,” he said, adding with a note of disappointment that his share only amounts to about 10% of its $22 price. The rest goes to Random House. Singer tried to convince the publishing company to donate a portion of its profits to charity as well, but they refused.

So for the record, Singer is clearly not a hypocrite. He walks the walk. But I wonder, is he doing the right thing by asking the world to give far less to the poor than they should? Or is it better for a radical leader to stick to his radical message? Imagine if Jesus, instead of telling people to “turn the other cheek” when wronged, said, “Take your revenge, but don’t hit back quite as hard as you usually do.”

Is the world worse off in some way, even if Singer’s pragmatic strategy pays off?

–John Bohannon

Have you ever suggested to a friend, even jokingly, that their favorite baseball or football player was on steroids? Have you ever gotten a positive reaction? The fact is, a lot of people would be very upset at the accusation that their idols were cheaters, as the use of performance enhancing drugs is restricted in athletics. It’s not fair, as the motivation for these restrictions outline, that one person should play better than another because they are taking steroids.

But why does “performance” have to be limited to athletic abilities? Theresa Lii of Brown University doesn’t think so. The off-label use of drugs such as Ritalin and Modafinil, collectively called “nootropics,” is rising. These cognition enhancing drugs are used to stay awake, boost productivity, and increase focus.

Suggest to the same friend that their use of Provigil makes them a cheater, because it’s giving them an extra edge in school or work. What kind of response do you think you would get then?

When do we draw the line between an acceptable performance enhancing drug and an unacceptable one? Do we draw one at all? If the purposes for these drugs aren’t really that different, should the same kind of regulations that are placed on steroids be placed on nootropics?
–Richard Blissett

Face transplantation presents a bioethical dilemma. Like other organ transplants, there is a risk that the body will reject it. To prevent this, patients are placed on immune-suppressing drugs, and often must continue this medication throughout the rest of their life. So face transplantation may lead to a shorter lifespan. But for the few people who so far have undergone the procedure, that is a worthwhile tradeoff.

Mary Rhee from the University of Maryland, Baltimore County, presented both the medical and the philosophical/psychological implications of this procedure today during the NUBC conference. On the philosophical/psychological side, the discussion began with the emphasis on the inherent “worth” of the face, in that it is an integral part of human identity. This is one reason why this is such a difficult bioethical issue, as a beneficial procedure that comes with so much baggage.

For some, the benefits far outweigh the loss of years of future life. Consider Isabelle Dinoire, a woman whose face was so severely mangled by a dog attack that she was largely unable to eat, drink, or even talk. Her wounds proved irreparable through the use of conventional reconstructive surgery. Hers is an easy case. But what of people who have facial scars that have no direct effect on their health and functions beyond social interaction?

Face transplantation is an excellent example of a core bioethical question. What is medicine’s purpose, to elongate life or to improve quality of life? Where should the balance be struck?
–Richard Blissett

At the end of his address at the National Undergraduate Bioethics Conference, Dr. Daniel Wikler posed a tough question to the audience. Two people need a liver transplant, one who is blind and one who is not. If there is only one liver available, who should receive the transplant?

According to a global health mantra, the sighted person should receive the transplant. This would amount to progress in global health, a small reduction in the burden of disease: A population of equal size that has one less person suffering from blindness is a healthier population.

Something about this answer feels repugnant, even for many who agree with the logic. There is no clearly desirable outcome in this situation. A human being will die regardless of the decision that is made. When facing such circumstances, perhaps the best we can do is to seek the lesser evil.

How would you decide who gets the liver? Save the blind person or the sighted? Or flip a coin?
–Kavin Sundaram

The field of bioethics is growing. More and more universities are incorporating bioethics into their programs and the exposure of major bioethical issues in the media is now a regular occurrence. Prenatal testing, new life-saving technologies, clinical testing of pharmaceuticals–these are just a few of the bioethical issues that we in the West hear about every day.

But Sarah Alsamarai of Boston College wonders: Are these the most important issues? Sarah emphasized that case-based bioethics often “applies primarily to wealthier, insured communities.” If people feel that both local and global bioethical issues are important, why is there so much focus on what Paul Farmer, American anthropologist and physician at Harvard, calls “quandaries of the fortunate?” The fact is that while there are many public health issues that are discussed within the bioethical community, they are often overtaken and overshadowed by topics that are more “popular” but an impact on far fewer lives–for example, preimplantation genetic testing.

As Sarah repeatedly noted, this tension does not imply that such case-based bioethical issues are not worth attention. Mainstream bioethics issues such as pharmaceutical testing need to be discussed. But collective bioethical issues, such as global health disparities, need to be brought to light. But journalists face the problem of a lack of interest on the part of media consumers.

Is this inequality of attention even something that can be fixed? What’s truly important to us, and what is there to be done about it?
–Richard Blissett

In 1997, a baby known as “Ashley X” was born. Like all babies she had limited control of her body and almost no ability to communicate. Tragically, Ashley would never acquire these abilities. She was born with static encephalopathy, an incurable neurological condition that left her severely disabled with the permanent mental ability of an infant.

The manner in which Ashley’s parents decided to deal with their daughter’s long-term care sparked a national ethical controversy. At the 2009 National Undergraduate Bioethics Conference today, this case was the focal point of a seminar presented by Christine Mitchell, the Associate Director of Clinical Ethics at Harvard Medical School.

"Ashley X" from her parent's blog http://ashleytreatment.spaces.live.com/blog/

Ashley’s parents, struggling to manage her care while giving her the best quality of life possible, opted to hormonally limit her growth, in part to make her easier to manage as she aged. Ashley’s uterus was also removed to preemptively eliminate the inconvenience/discomfort of a menstrual cycle.

Some questions that Mitchell raised with regard to this case were: 1) Were the actions of Ashley’s parents justified? If not, why not? 2) When, if ever, is it ok to use medical intervention to ease the burden on caregivers?

–Ashley Mrva

How much should a really rich guy give to the poor in order to not seem like “a complete A-hole?” Colbert asked last night. Singer’s answer: I don’t know, maybe 10%… Then Colbert notes that Singer’s book costs $22 and asks him how many lives that money could save.

I think Singer held his own. (It’s not his first time on the Colbert Report.) But what if he hadn’t? What if instead he came across as a hypocrite for not living up to his own philosophy? Should it matter for you and me? An idea should be considered on its own merits, not by the popularity or integrity of the person who puts words to it. Then again, most people have a different intuition, that you should “walk the walk” if you want to convince anyone of a radical idea, such as Singer’s claim that we should all be vegans who give away most of our disposable income to help those in the greatest need. (I’ll be checking what he eats tomorrow evening at the conference here.) [Editor:  See for yourself whether Singer is a hypocrite.]

But would it matter if Peter Singer turned out to be a meat-eating scrooge? Would his arguments be any less convincing?

–John Bohannon

I used to think journalists—especially when they cover tough topics like bioethics—get a bad rap for fumbling stories. Not today. Nope, today at the NUBC conference I haven’t heard a single person criticize the media for getting facts wrong, or sensationalizing a story, or explaining complex issues poorly.

Instead, at every turn, someone is lamenting that writers have missed a story altogether.

In his talk this morning on the tricky issues in treating adolescents with antidepressants, Steven Hyman noted how surprisingly prevalent suicide is: each year in the U.S. there are 20,000 homicides, but 30,000 suicides. Not what you’d expect by reading the papers, he said.

Of course: a murder and its investigation occasions a barrage of news coverage; a suicide does not. And surely it shouldn’t. Perhaps there, the complexity, and tragedy, demands instead a fuller treatment—a meaty feature story, an in-depth documentary.

Or maybe not. “People want to read about crises,” said Bonnie Steinbock, whom I talked to later in the morning. “And they want it made simple.”

Do we always tune out the substantive and the sticky in favor of the sexy?

Almost on cue, Dan Wikler sprinkled his talk this evening with assertions that the biggest bioethical conundrums around—the so-called “New Issues”—are the ones we’ve never heard about. We aren’t told about a disease unless it’s going to reach us in the privileged Western world. We aren’t made privy to the quantitative analysis undertaken in setting global public health priorities, because it’s just too mind-boggling.

Are there exceptions? Have you found yourself reading an article about a complex health issue so compelling that you couldn’t put it down?

—Megan Talkington