sci fi meets nursing

My ethics class last week covered the topic of genetics. Our guest speaker was Jeff Kahn, director and professor of the Center for Bioethics at the U of M. Cate pointed out that the book Better Than Well, which I have been 1/2 way through reading for over a year now, was written by Carl Elliott who also works in the Center for Bioethics. I wonder how well they know each other. Are they friends? Ooh, Elliott does mention Kahn in his acknowledgements section. I can only imagine the great conversations they must have.

So just two days prior to this lecture, I watched The Boys from Brazil – a movie made in 1978 starring Gregory Peck, Sir Laurence Olivier, and… wait for it… Steve Guttenberg! (A very young and strapping Steve Guttenberg, I might add.) This movie totally set the tone for the lecture for me. If you haven't seen it and don't want me to ruin it for you, stop reading. But it is basically about Dr. Mengele (Gregory Peck), a nazi, who figures out how to clone humans. He had a creepy research lab in Paraguay (for some reason, not Brazil) where he impregnated a bunch of women with little baby Hitler clones.

At one point in the movie, a university scientist explains the cloning process. What it boils down to is that you take an egg, remove its inside bits, and replace them with a cell from whomever you want to clone. In this case, it was some old blood from Hitler. A picture of this process looked like this:

Maybe I would have been more easily frightened by the scary, sci fi cloning part of this movie if I had watched it in 1978. Now that cloning is a real possibility, the movie takes on a completely different tone.

In a recent Midmorning show on MPR, Kahn briefly talked about cloning. The surrounding topic was in regards to research that claims that it is possible to make a stem cell from an ordinary cell, such as a skin cell. This stem cell can then be turned into any other kind of cell you want to grow it into. Theoretically, it would also be possible to create a human embryo by these means. This clone would have the same potential as a naturally fertilized egg. Kahn points out that we have yet to see cloning used to make a human baby. Human cloning is actually illegal in most countries. Interestingly, it is not in the US.

In his lecture to my class, Kahn spoke about the ethical implications of genetic testing and in-vitro fertilization. For a visual aide, Kahn showed us this slide:

This picture is an example of what pre-implantation genetic diagnosis (PGD) entails. Doesn't it look creepily like the Hitler cloning pic? Eh?

In PGD, an embryo is created using in-vitro fertilization. After about 2 or 3 days, when the embryo consists of 8 cells, a biopsy is performed (as shown above). The DNA from the one cell that is removed can then be tested for various genetic diseases.

As an example of PGD, Kahn brought up the case of the Nash family. For anyone who has read Jodi Picoult's My Sister's Keeper, the book is based on the Nash case and delves into the ethics of PGD and how it affects the interpersonal relationships of the family members.

The Nash's first child was born with Fanconi Anemia. This disease is genetically recessive and both the Nash parents have one recessive gene. Children with this disease are born with dysmorphologies (such as having no thumbs or incomplete guts), reduced IQs, and are likely to get leukemia by around age 6. The Nash child did get leukemia and needed a stem cell transplant to survive. Unfortunately, there were no matching donors. The Nash's knew they wanted another child and instead of using PGD for the sole purpose of ensuring their next child did not have Fanconi Anemia, they also wanted to use it to select an embryo that would be an exact immune match for their older daughter. In this way, the Nash's could have a healthy second child that would also save the life of their first child.

The questions that must then be asked are:

1. Is this ethical? The Nash's did not manipulate genetics but rather selected one embryo over another for specific traits. Should traits be selected purely to avoid disease or may non-disease traits also play a part? In the Nash case, they did both.

2. Why does this case matter? We do not ask people why they choose to have kids. Should we be allowed to ask the Nash's?

3. What role do nurses play in such bioethical issues? In my opinion, one role of the nurse (in any situation) is to educate and inform people. The people in question can be patients, family members of patients, or the general public. In any of these cases, it is the nurse's job to make sure the person fully understands the issue at hand so they can make their own informed decisions based on solid, non-biased information as well as their own ethical standards. Complicated genetic testing and treatments need to be put into a language that anyone can comprehend. Moreover a nonjudgmental space needs to be created so that ethical implications can be openly discussed. Situations can become complicated however when a nurse's personal moral code conflicts with the interests of the patient. What modalities do we have to lean on when confronted with our internal ethical debates?