*Just a little disclaimer to the thousands of readers I must have by now, this is only a rough draft, so hang in there with me while I work the last few kinks out and get the visual material added.
In a simple Google search, you can find over 20 reasons 47.6 percent of women are choosing not to have children, but but one reason that is consistently at the the bottom of most lists is due to a fear of negative genetic inheritance. Due to a historical past in eugenics – selective breeding to rid a population of unwanted traits – there are some who have issues with genetic testing because of the possible implications it could mean for voluntary gene selection.
What that Google search won’t show you is how those women cope with the decision not to have children. It won’t show you how it changes their relationships, career, living situation.
However, some people are more susceptible to genetic diseases than others. According to the Wall Street Journal, Rabbi Josef Ekstein started Dor Yeshorim, which tests potential couples before marriage to assuage the fears of those who might risk passing down any of nine common diseases found in Ashkenazi Jews. If a match is discovered to have such risk, Ekstein, who lost four of five children to Tay-Sachs, discourages the couple from marrying due to the potential risks. While this has shown a reduction in the birth of children with diseases such as these, the limitation of couples being allowed to marry could trigger a negative response from people because of its similarity to the concept of eugenics.
In an interview with the Associated Press, Ekstein said, “I am a Holocaust survivor. I was born in the middle of the second World War. I hope that I am not a suspect for practicing eugenics. We are trying to have healthy children.”
For some, genetic and carrier testing can mean having more information of your past, as well as your future. In the event that no prior medical history is available for the potential parents, this form of testing allows participants to not only see what risk there is for any children, but also see if they are at any risk for developing any diseases later in life. According to the 2010 census, approximately 15 million children had no knowledge of their biological father. Carrier testing could prove imperative for those unable to access potential genetic risks for their offspring due to an absence of information from one of the parental figures.
“I mean, I know what his name is, but I’ve never bothered to meet him or try to talk to him. I figure if he wanted to know me, he would,” said Christopher Kennedy when asked if there were any concerns about having children because he didn’t have access to half of his genetic makeup. “My mom mentioned once something about Huntington’s Disease, but I didn’t know about that until after Alexis was born and she was never able to give me any real details. I’d probably get tested to see if it’s a concern if I wanted to have a second child.”
As testing becomes both more affordable and available, more couples are getting screened to see the probability of passing down unfavorable genetic material. Some even choose to abort fetuses who have tested positive for diseases such as Cystic Fibrosis and Tay-Sachs, though this leads to the possible discussion of eugenics. A study in California showed the number of babies being born with Cystic Fibrosis reduce by half due to prenatal screenings that resulted in selective abortions.
There are two forms of testing that can predict the likelihood of a child possessing unfavorable, or even fatal genetic traits. Carrier testing happens before conception and tests the parents’ genetics to see if they are carriers of any genes that would contain any of up to 100 diseases. The alternative form of testing takes place post conception through testing on the amniotic fluid surrounding the fetus. This form, while it can be a fundamental form of preparation for some parents, is also being used as an avenue to decide selective abortion. Topics such as this tend to raise huge ethics and morality questions.
“It makes me uncomfortable to say a child is defective once you do a test. For me, I’d be much more comfortable on the front end deciding not to take the chance [on having children], than waiting and deciding based on whatever those factors are. There’s just something troubling to me, deciding who is worthy and not worthy at that moment,” said Dr. Jaime Harker, Director of the Sarah Isom Center for Women and Gender Studies.
Women are not the only ones who are concerned with what genetics their offspring will receive. Many diseases require both parents to be carriers, known as autosomal recessive inheritance. Tay-Sachs, for example, is one such condition that causes progressive damage to the nervous system. Genetic inheritance factors like this requires input from both parents to decide if the risk is worth having children. However, some diseases only require one parent have the gene in order to pass it to their offspring, known as autosomal dominant inheritance. Type 1 Neurofibromatosis, a condition that causes tumors to grow along the nerves, is one such disease.
When it comes down to having children, there are numerous decisions that have to be looked at, and it varies from person to person on whether to take the risks associated with genetic inheritance. However, it seems to be the general consensus that if diseases such as Tay-Sachs and Huntington’s Disease were eradicated, or at least preventable, due to things such as carrier screenings, most would find it beneficial and a mental relief when discussing having children.
“My kids are everything, but if I had known [about carrier screening] and I was told there was a risk of them having one of those diseases I probably wouldn’t have had them,” said Bruce Newell, a single father of two. “That’s scary thinking about all the things that could go wrong, but if someone had told me one of my kids was sick before they were born, that’s between me and God and I would have had them anyway.”