Lunch at Danek Gertner Institute of Human Genetics

Dear Readers,

So I’m already one week into my trip to Israel and things have been going well. This post I’m going to focus on a meeting we had with some of the key members of the genetics institute at Sheba, the same institute where I will be starting work one week from today. While my official position here will primarily focus on lab work, gene segregation, hard science, etc., this talk focused on general role of the institute, how they run on a day-to-day basis, and the ethical implications of genetic testing in general.

The first portion of the meeting was dedicated to an introduction to the Institute. Basically, it is split into the clinical practice and non-clinical research. There are sub-divisions within the institute that deal with specific types of genetic disorders, and each of these divisions has both a clinical and a non-clinical arm (For example, I will be working in non-clinical research with the Institute for Rare Diseases).

We then went on to discuss some of the work done by the doctors at the Institute. In the words of the director, the institute deals with primarily preventive medicine. At first, I thought this was a kind of presumptive statement. Surely much of the work done by the institute is in diagnosing patients…how could he consider that to be exclusively preventative medicine? However, the director went on to explain that for every patient with a new diagnosis, most of the work comes in helping that family avoid further complications of their particular genetic disorder. For example, if two parents’ first child suffers from some kind of syndrome, not only will the institute work to help diagnose the child, but they will also help the parents avoid having another child who suffers from a genetic disorder. Additionally, upon identifying a novel genetic disease, the research branch of the institute will work to understand the disease, in effect, preventing the suffering of more people.

The director also went on to discuss some of the ethical implications associated with the Institute. Although I have done some research into Israeli bioethics prior to this trip (perhaps a later post will discuss why), it was really interesting to hear about Israeli ethics first hand. The director touched upon many of the major issues that I have read about (genetic testing in the case of non-terminal illness, pre-implantation diagnosis, the reasons behind Israel’s acceptance of genetic testing, abortion, etc.) as well as a few I was unfamiliar with (pre-implantation diagnosis to ensure parents have children who all have the same genetic disorder, who are of a certain sex, etc.).

In retrospect, the entire lunch reminded me of a paper I read back in June entitled “On new reproductive technologies and family ethics: Pre-implantation genetic diagnosis for sibling donor in Israel and Germany.” In this paper, professors Yael Hashiloni-Dolev and Shiri Shkedi analyzed the different definitions of “ideal” familial relationships in order to understand the difference between the German and Israeli populations’ views on new reproductive technologies. Throughout the paper, Hashiloni-Dovel and Shkedi kept coming back to the idea of the “perfect jewish child.” According them, parents in Israel want nothing more than to have a “perfect” baby. Whereas in some cultures—such as Germany—failing to love your children for who they are is seen as a parental failure, in Israel (apparently), wanting to have a “perfect” child is seen as an expression of love. While German parents who would prefer to have an “improved” child are viewed by society as selfish and unappreciative, in Israel, if parents do not do all they can to have the healthiest child possible, it is almost perceived to be negligent.

In all honestly, when I first read this paper, I was not entirely convinced of its accuracy. I believed it to be true in an extremely general sense, but realistically, how pervasive could this attitude be? However, during our meeting with the Genetics Institute, a similar theme began to emerge. Everyone who spoke with us mentioned society’s need to have children, in particular, perfect children. I thought the genetic counselor summed up everything nicely. According to him,

“It used to be that everyone had eight, ten, twelve children, and hoped for a few to have some success in life. Now, most families only have between one and three children, but they expect them all to be beautiful and smart and healthy and for each to have tremendous, tremendous success. It just isn’t possible. Genetics can’t do all of that.”

Looking back on both our lunch and the Hashiloni-Dolev/Shkedi paper, I don’t really know what my opinion is. I totally understand wanting the best possible life for your child, but at what cost? If every parent only consented to have perfect children, what would happen? Our world is filled with people doing tremendous good despite being far from perfect. Some of the greatest thinkers of our age have some sort of disability; what if their parents had chosen to have “healthier,” more “perfect” children. Would our world be the same? Both nature and nurture have a hand at shaping our lives. Genetics isn’t all of it.

Anyway, I’m starting to ramble, so I think I’ll wrap up right about now. Basically, this was the first instance of this trip where I really started to realize how different bioethics is in Israel. Back in June, I knew that Israel was an interesting place to study genetics and bioethics (hence why I came here), but I didn’t really anticipate how obvious it would be while on the ground. I have a lot of experience as a student, but this is the first time in my education that I have really been immersed in another culture. If anything, this lunch at the Genetics Institute has left me overwhelmingly excited to truly experience Israeli culture and bioethics because it is going to be an education I would have never been able to receive in a classroom at Georgetown. I guess books and papers can only get you so far. That’s all for now, and I hope everyone is having a good week!

Emma

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