My Sister’s Keeper: Q&A With a Medical Ethicist
If you haven't heard our podcast yet, listen now! Christine Mitchell, director of ethics at Children's Hospital Boston and the associate director of clinical ethics at Harvard Medical School, might get you thinking about in the book in different way.
Consider this: is it really unethical to have a child as a means to something else - in this case, having Anna so her umbilical cord could be used for Kate's stem cell transplant - when it's been going on for centuries? Didn't families used to have children to help with the back-breaking work on the farm? Didn't royal families always have at least two children so they could have a "spare" if the heir died?
"The reasons we get here, when they're not accidental, are quite varied," Mitchell says in her podcast. "When you put it in perspective ... it doesn't seem nearly as peculiar just because it's the employment of a new technology. Having a child because it's possible to use the blood from the umbilical cord for [another child's] stem cell transplant is among the better reasons."
Mitchell provided us with such great insight we couldn't include it all in the podcast. Here is what she said about the role of medical ethicists, changes in the field, anticipating ethical trends and prebirth planning:
Q: What exactly does a medical ethicist do?
A: Christine Mitchell: I'm the ethicist at Children's Hospital Boston. I go on rounds with staff and see patients where there are questions about what they ought to do, especially if there's a disagreement. It might be a family who doesn't want their child to have a surgery that the staff really feels is important. I meet with the family, patient and clinical team, and if it's a formal consult, there are three or four other members of the ethics committee with me.
Q: Who makes up an ethics committee?
A: Ethics committees now in almost all hospitals are multidisciplinary; there are usually three or four physicians and an equal number of nurses, a psychologist or psychiatrist, a social worker, a couple community members and an in-house or community chaplain. There may even be a couple of chaplains from different religions if relevant to a case. Some committees also have attorneys or risk managers. But the main thing is the committee involves people from a variety of perspectives, not just healthcare.
Q: How has technology changed the ethical landscape?
A: There's this little saying in ethics that "ought" implies "can" - ought meaning value decisions, or decisions about what people should do - and that is usually the herald for an ethics moral obligation. "Ought implies can" means you don't really have to worry about what you ought to do, unless you can do it. Well sometimes that gets twisted around. People think just because you can do it, you ought to do it. That has often been called the technological imperative; in other words, because we can do these things with technology, people assume that we ought to. Some of what ethics committees do is provide a little bit of a curb on that technological imperative and think more seriously about whether we ought to do the things we can do.
Q: Would you back a family's decision to have stem cell research or preimplantation genetic diagnosis?
A: It's an advantage to many families to have preimplantation genetic diagnosis. This procedure entails joining the egg and sperm outside of the womb, testing it for known genetic diseases, and then choosing an embryo that doesn't have that genetic problem. It means a child with a genetic disease that would otherwise be deadly, or lead to a very painful life of suffering can be avoided - and it's hard to say that's wrong, although there are some people who do. So people can exercise individual choice about whether they would use that technology. It doesn't seem right to impose a restriction that covers everyone since it's a value not everyone would share. Stem cell transplants are getting more difficult. If we know a child like Kate's life can be saved with a blood transfusion from the umbilical cord, and that's available, it would be hard to respect a family's desire not to have it. We probably would respect it, but that gets into much more difficult domain where we have to look at the details of the specific case.
Q: How do ethics committees keep up with the changing ethical landscape brought on by new technology? Do ethics committees ever get together and say, "This is what's coming up and here's how we're going to handle it."?
A: Most ethics committees have educational programs every few months. We have our genetics division tell us what screening and testing devices they're starting to use that might allow families to choose treatments, so we can have a better understanding of what the possibilities are. Trying to get background information is pretty normal for ethics committees. What we don't do is harden things into policies or protocols in very new areas. Especially as treatments are in creation and we don't know what the ethical issues are going to be. That takes time and experience to get a better grasp on the generalizations that can be made into guidelines or policies.