Saturday, October 18, 2008

Eugenics or Designer Babies


In our modern age we have come to a point in time where we can not only decide we when want to have a baby (even after menopause) or how many we want (IVF with selective downsizing or multiple fertilized embryos allowed to go to term), but we now can decide what color eyes (s)he will have, the intelligence level to give him a heads up on others, how tall or short, even the sex.

Taken a step further, we can screen for more than 900+ genetic disorders according to the National Institute of Health. If you so chose, for $89.00 you can do a home test for DNA screening. What was state of the art ten years ago is as common as new reality shows on television. The concern I have with all of this forward movement we have in making genetic selections is in regards to really knowing the future consequences of our actions. I feel we are moving so fast we forget to stop and look at the big picture.

In the United States today, 20% of couples that delay pregnancy for whatever reason will end up with a permanent delay of infertility as the time frame to have their child has past them by. This fact increases the number of couples looking for assistance in having a family when they had planned. Medicine is a business that depends on clients that can pay for the services offered. Many couples have waited to have children until they are secure in their jobs, have money saved up and lifestyle they feel is right for children. Now more than ever before the savings is used to help get the couple pregnant, not just for after the pregnancy. If you have only a few chances to have a baby, and need help from an outside source, you want to make sure you get what you really want. Many people are now looking into genetically designed babies. They are choosing to take the most desired traits between the egg donor and sperm donor (not always the mother and father raising this child) and match them up for a baby with a genetic makeup that is the best they can have. By choosing certain traits over others (blue eyes vs. green) are we telling the world we believe someone with the undesirable traits are not up to our standards. This rings of eugenics, breeding for desirable traits, brought to the forefront during WWII with Nazi Germany.

Genetic counselors are used more and more these days to help couples understand the results of any genetic screenings done either before they get pregnant or after the pregnancy is assured. What we need to keep in mind is the fact any parent is a carrier of at least one recessive gene that can cause illness in future generations. If they were to decide to abort because the fetus has the full mutation, (the disease), the immediate children are free from the illness. This leaves two-thirds of the un-aborted and unaffected children who will be carriers anyway. No one is really “saved” from this mutation, just this next generation. We must also be aware of the fact not every gene needs a matching one from the other parent to cause disease. In rare cases a genetic mutation on the 15th chromosome from dad can cause Prader-Willi Syndrome and the same mutation from mom can cause Angelman’s Syndrome.

A known fact in genetics is the inevitability of our genetic material breaking down over the years. It is why we grow old. As our genetic material breaks down, the chance for mutated genes increases, thus the chance of giving a mutation to an offspring rises with our advancing age. Each one of us carries mutated genes given to us from our parents. Most of the mutations that cause disease are both recessive (need one from mom and one from dad to have the mutation in an offspring) and extremely rare.

As genetic screenings continue, we are learning more and more about the effect it has had over generations. For example carriers of the sickle cell anemia mutation have a natural defense against Malaria, helpful to those living in Malaria ridden regions of the world, not good for offspring of two carriers who have a 50-50 chance of being born with the disease. People alive today who can trace their family trees back to survivors of the Black Plague can rest easy in the knowledge they are highly resistant to the HIV virus. What if genetic testing was available during the middle ages? Would we have still have this resistant genetic material to what has been called the plague of the 21st century?

One positive aspect of genetic testing arises in an unusual situation among Ashkenazi Jews. Screenings for Tay-Sachs and Cystic Fibrosis (very common in this group of people) are done on school aged children. When match making is considered between two people, the anonymous numbers assigned at the screening is called in. If both are carriers, the marriage is discouraged. The Committee for the Prevention of Jewish Genetic Disease has shown the practical results of this voluntary policy, as impressive despite being referred to as eugenic by the New York Times. The argument for this kind of testing is found in the need to think ahead regarding who will care for a child with such a devastating diagnosis. It is not only the physical demands placed on the families but what about the financial burdens placed on society as well. Long term costs could run into the millions. In cases like these, the greater good becomes a question that should be asked by all involved.

Cystic Fibrosis has been virtually eliminated from the Jewish population in the United States. Unfortunately, we have found a link between Cystic Fibrosis and Typhoid. It is only the difference of a few letters in the DNA, but a dramatic difference in diseases. By wiping out one, are we encouraging the other?

There is a famous legal case from 1927 titled Buck vs Bell where a woman was deemed feeble minded, was made a ward of the state living in a state run home, and considered by Justice Holmes of the Supreme Court to be a drain on society as the third generation of a feeble minded family. Carrie Buck was forcibly sterilized after having a daughter believed to be feeble minded also. This case shows the dangers of making decisions without knowing all the facts. As time has shown, Carrie Buck was found to be of sound mind, and her daughter was an honor roll student in school.

Time will allow us to see the consequences of decision we have made or will make in the future. I just hope we can learn from the past as we head into the future.

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