the Electric Monk

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

Prison is a brutal place designed to punish people for crimes they willfully committed. And yet a large portion of US prisoners are  mentally ill, many so ill that they are not fully rational.

Due to the nationwide lack of available community psychiatric services, prisons have become the primary treatment provider for the mentally ill. After being charged with a crime, mentally ill offenders enter a vicious cycle of incarceration, abuse, exacerbation of symptoms, and recidivism—and the treatment they do receive is almost universally sub par. Some argue that prison is absolutely no place for the mentally ill. Others contend that prisons are the only source of guaranteed treatment and supervision for the mentally ill in this country.

On what grounds should we imprison the mentally ill? If there are none, what are we committed to do?

–William Kowalsky

From where we stand in America, Africa seems so far away – an ocean and plagues of malaria, tuberculosis and tropical diseases away. Yet merely a hundred years ago, the southern United States had similar rates of malaria running rampant through its warm climate.

So what happened? The US eradicated malaria through mosquito nets and draining the swamps that bred infected mosquitoes. But what of Africa?  Dr. Lachlan Forrow discussed the issue in his seminar “Moral Responsibility and Health Disparities in the U.S. and Africa: Lessons from Dr. Albert Schweitzer” this afternoon.

Economically, it’s relatively cheap to prevent malaria using the same techniques that we used in America, and these techniques are known to be effective. So we have the measures to eradicate it – Dr. Forrow even mentioned a malaria vaccine that will be tested in a randomized clinical trial on March 31 – but the progress in Africa has not been anything like that experienced in the southern US.

So what is limiting us from helping Africa eradicate malaria? Are we morally obligated at all to help them?
–Asra Shaik

A couple would like to have children but they have a problem. In spite of many rounds of in vitro fertilization, they have been unable to conceive. They have been working with a particular ART clinic for 10 years now, and both the couple and the clinic are in a sticky situation. The mother and father are now in their 50’s and 60’s, respectively, and are determined to bear a child through the use of a donor egg and gestational surrogacy:  another woman will give birth to their child. However, the clinic has a policy to not perform ART procedures in cases where the mother is of advanced maternal age, 50 years old being the cutoff. Is it right for the clinic to deny the couple on this basis?

The theme of the 2009 National Undergraduate Bioethics Conference is “New Technology, New Ideas, New Challenges.”  The dilemma faced by the clinic is one of those new challenges. Dr. Lisa Lehmann, Director of the Center for Bioethics at Brigham and Women’s Hospital, presented this story during her seminar on “Ethical Challenges of Technology in Clinical Practice.” She had planned to discuss two other issues, but the seminar participants became engrossed in the dilemma of the older couple.

What if it was your decision whether or not to allow the clinic to help the older couple conceive through gestational surrogacy? Would you deny them the child for which they’ve waited so long? (Be careful, for if you deem people unfit to have a baby due to advanced age, why stop there?)
–Richard Blissett

Welcome to Electric Monk, a many-headed bioethics blog launched for the occasion of the 2009 National Undergraduate Bioethics Conference at Harvard University.