by Craig Klugman, Ph.D.
In case you have not heard, the big bioethics story this week comes out of Philadelphia where a 10-year-old girl with cystic fibrosis is in need of a lung transplant to survive. Sarah M has been on the transplant list for a while but her chances of getting a lung are slim. According to United Network for Organ Sharing (UNOS) rules, children under 12 can only get lungs from child donors and can only be offered adult lungs after all potential adult donors have been approached. The problem is that there are very few children donating lungs. Sarah’s parents did not like this rule and thus sued in court to allow their daughter to circumvent the national rules for their daughter. This came after an appeal to the Department of Health and Human Services led Secretary Kathleen Sebelius to state she would not change the rules. The court ruling said that the under-12 rule cannot apply to Sarah for a period of 10 days. UNOS has complied with the order and placed Sarah on the adult transplant list. The judge has created a 10-day window for Sarah to receive an organ at which time another hearing will look at abolishing the age restriction more broadly.
There are scientific reasons for the rule. Children do not fare as well with lung transplants than do adults. And the literature on the outcome of lung transplants for children with cystic fibrosis is also not encouraging. Sebelius has ordered an investigation as to why this is the case, but Sarah’s parents say they don’t have time for that.
Did I mention that there are several other children at the same hospital in the same predicament? The UNOS rules have been created, tweaked and re-created over decades by panels of experts trying to create a fair, just, and unbiased system for distribution of donor organs, which are always in short supply. But now a single judge has overturned the whole applecart, making medical decisions for other physician’s patients. And what about all of the other children whose parents didn’t have the education, finances, or gall to try to change the rules for their child alone? This is a case about fairness, inequity, and blurring of spheres of justice. Either a system of rules and rationing applies to everyone or to no one. Perhaps we should allow open selling of organs and the highest bidder gets them? It’s far from fair but at least it’s a system. This is an example of the “rules are great for everyone else” thinking that makes it difficult to have real meaningful health policy discussions and decisions in the U.S.
Referring to the title, this is where the bioethics bandwagon comes in. Looking at news stories on this case, one will find any number of bioethicists quoted on this case. I received an email from a national New York media outlet this morning to comment on the case. In the two minutes it took for me to receive and respond, they had already found someone else (apparently 2 minutes is too long for deliberation in the news world). When stories with bioethical implications like this hit the media, reporters turn to bioethics scholars for “expert commentary.” It becomes our moment in the sun for outsiders to see that we have a lot to offer. We also have to be careful because reporters like short soundbites, not long, reasoned arguments. Thus, to be an effective expert you have to speak in short clips. I may have lost my 15 seconds of FAME, but I also had time to think more about this case.
Given that this is a big news story, it seemed appropriate to be a bioethics.net blog piece. What bothered my blogging conscience though, was the idea that many of us in bioethics tend to chase the story and focus on the hot news item. And why not? It brings prestige to our institutions and to our careers. The interview offers makes us feel important and it flatters our egos. However, while we are all commenting, teaching and discussing this one case, we are not talking or thinking about the millions of people who lack health care, the other children not on the transplant list (remember the other kids in the same hospital as Sarah who also need new lungs), people who are suffering in poverty, or people who deal with injustice everyday. In other words, these cases cause us not to focus on a tree in the forest, but to look at one particular leaf on that one tree.
For example, this is not a conversation about the fairness of the UNOS system and the rule. That discussion is being offered but is not sufficient for the parents. Also waylaid in this conversation are notions of fairness. Many issues become hot in the bioethics world because of their aesthetics. Sarah is a cute white girl. Would there be this reaction for a girl of color? Or a poor girl? Or a gay girl? While we should not deny the role of emotion and human reaction in our decision-making, the aesthetics and personal economics of this case are factors in why it has reached national consciousness.
Hopefully some good can come out of this such as a larger national debate on these issues. Hopefully bioethics can look at the social justice and larger issues involved rather than a sweet picture of hope for one girl. Hopefully those conversations will be factually-based and well-reasoned instead of a knee-jerk reaction to one specific case that has jogged the emotional intuition of a nation. And if we keep the same rule or change it, we must all acknowledge that the rules must apply equally to everyone to be fair, not just to everyone but me.