Privacy and the risks of IVF

A recent article in Toronto’s National Post tells of the experience of Dr. Rosanna Weksberg, a University of Toronto geneticist, when she presented a talk on the need to study risks associated with IVF (in vitro fertilization) to the Canadian Fertility and Andrology Society. Her talk related her experience in seeing an increased number of children with rare genetic disorders among children conceived by IVF. Some of those disorders are seen as much as 10 times more often in children born by IVF.

She expressed her concern that follow-up studies of children born by IVF are needed. The reception from the meeting of fertility specialists was polite, but no interest in her proposal for study was expressed. She said she has been trying to find fertility clinics willing to partner in studies of children born with the help of reproductive technology, but has not found any willing to work with her. A spokesman for the fertility society said they were interested, but that clinics could not afford to fund research.

In the United States assisted reproduction is a 3 billion dollar a year industry, but like in Canada there is no accurate information on the risk of genetic disorders, birth defects, or other increased health risks of the children produced by these procedures. Our culture has set apart everything having to do with sexuality and reproduction in a domain protected by privacy. That protection is so complete that it causes assisted reproductive technology to be entirely unregulated and makes any attempt to study the outcomes of the children produced exceedingly difficult. We need to recognize that, even though privacy in reproductive decisions is important, people cannot make responsible decisions without good information. Those contemplating the use of assisted reproductive technology need to know what the risks are for the children they bring into the world. They owe it to their children.

Kaddish “I Am Here”

This past fall, I had the privilege of attending the Houston Symphony’s production of

A prisoner in a special chamber responds to changing air pressure during high-altitude experiments. 1942. Dachau, Germany

Kaddish.  The Kaddish Project seeks to commemorate the noble struggle of individual Holocaust survivors, including four who have made their homes in Houston.  Much of my research at Trinity focused on the concept of personhood, that we are more than just biological systems but instead are “someones,” persons.  I couldn’t help but think of this as I heard the chorus sing the song of the persecuted Jews: I am someone and “I am here.”  Though mocked and beaten in the streets even in the days before World War II, the Jewish people of Europe taught their children that they were of value even though others thought otherwise.  The soloists and chorus related the story of one survivor’s recollection of a concentration camp.  When the prisoners arrived, those under 14 years of age and over 65 were separated to the left and killed.  They were less than optimal for the German labor camp, so they were eliminated.  Kaddish led me to reflect on how physicians were a significant part of the German “Final Solution.”  They were the ones who deemed the crippled and deformed, the mentally deranged and deficient economic burdens.  That’s why I think that as we look for disease and perform technical procedures, it’s important for us to remember that our patients are someones who we must relate to and care for.