July 2, 2013

Part II: What does it mean to be human?

Plenary lecture by Professor Aaron Ciechanover entitled,

“Drug development in the 21st century – Are we going to cure all diseases?”

What if sequencing our own, personal genomes becomes common practice?

The causes of breast cancer can be complex. EGRF-1, HER-2, BRCA-1 are all proteins in our bodies that upon mutation, can lead to breast cancer. However, a drug only targets one of these proteins, and if the wrong drug is prescribed to the patient, then the patient will see no benefit and their health, their survival, will be compromised. Thus, sequencing of a patient’s genome would allow the doctor to pinpoint the protein that is mutated and prescribe the proper drug to treat the cancer. This is one of the more obvious, practical benefits of “personalized medicine” as Ciechanover defines it. I agree wholeheartedly with this route.

But things can become ethically tricky really quickly when a person’s genome becomes sequenced. What does one do when one finds out that they have a mutation that increases the probability of having cervical cancer? Does one decide early on to surgically remove the tissue? What about having children? Should one first have a child, then remove the tissue? Should one even consider bringing a child into this little blue world with the knowledge that they too will be predisposed to the cancer?

Ciechanover illuminated the story of Angelina Jolie, who decided, after having children of her own and famously adopting others, to remove the tissue that would probably become cancerous. The question is not only about what to do with this information, for one’s own health, but whether to know the information in the first place.

Would it be better to never know one's own disease proclivities? For example, would one want to live out their life with the ever present, potentially painful knowledge that any day, they may find cancer in their body? Further, would one want to bear the burden of knowingly delivering these potentially unhealthy, deadly genes to their children? For example, would it simply be simpler to have children without knowing their proclivities for disease than to know the chances and have the children anyways?

I’ve thought long and hard on this issue myself, though recent science suggests something can be done about my disease, Muscular Dystrophy (MD). I sketched a quick square of major outcomes of having a child, where: 1) my genome could be sequenced; and, 2) a cure or treatment is made available to deal with the disease.

Let’s assume I know I have a genetic disease and the only way to treat the disease is to do so before the child is conceived (i.e., in vitro).

First, I would not treat the child and conceive the child with the knowledge he/she will likely have MD (and that it would make him/her tougher, as it did me), and the two possible outcomes would be: a) she would hate me for knowingly giving birth with a terrible disease; or, b) she would love me for allowing her to learn how to be truly tough.

Second, I would treat her and she would not have the mutation causing MD, and the two possible outcomes would be: a) she would be happy that she did not have to have this disease and know what it is like to run fast (can’t be all that awesome; I wouldn’t nor do I care; I am happy); or, b) she would hate me for curing her, wishing that she had a profound method of toughening up.

As with the style of all the plenary lectures at Lindau, no discussion follows immediately after each lecture. Rather, the Laureates are available during the coffee breaks, Young Research discussions, Panel Discussions, or at a local pub in Lindau later in the day.

After Ciechanover’s lecture, I was very excited to attend the Young Research Discussion section later today. Read on for the next post where I share my experience of the rest of the plenary lectures today!

… kevin eduard hauser