Hereditary diseases do not occur with us, as far as I know now. Fortunately! It doesn't guarantee the future, but it's in the hands of fate and not in the DNA. But what if you know that you or your partner are carriers of a hereditary disease? How far would you go to fulfill your wish to have children without a hereditary disease? What do you think of culturing embryos specifically for research?
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Do you have reason to think that you or your partner are a carrier of a serious condition? Then you can have that examined. If the result turns out to be negative, there are several choices you can make. Take the risk anyway and test the unborn child for the hereditary disease. Or don't take any risks by not having (biological) children. Or select the embryos for the presence of the disease in the DNA and only place the 'healthy' ones.
Certainly when a condition is of a very serious nature, you as a parent-to-be will absolutely not want to burden your child with it. Although the medical world has fortunately already developed in such a way that there are possibilities not to burden your child with a hereditary disease, the choices are not easy.
Last year, Minister Schippers gave medical researchers permission to cultivate embryos under strict conditions. The target? In the long term, allowing people who have become infertile due to cancer treatments, for example, or who were born infertile to have children. Even people who are burdened with a serious hereditary disease can avoid risks in this way. Since so-called residual embryos from IVF treatments from other couples (with permission!) can do nothing for these people, cultured embryos are necessary.
The Health Council now wants to use the cultivation of embryos for broader research. They want to investigate the technique whereby the 'sick DNA' is removed and other DNA is replaced. With this technique, parents with a hereditary disease such as Duchenne, cystic fibrosis or Huntington's disease would no longer pass it on to their children.
While no parent would wish them serious illness, the method is controversial for some people. For many people an embryo equals a human life, no matter how early, and that doesn't defy you. According to them, culturing embryos is not done. However, an embryo is still a fairly broad concept. Researchers are talking about early embryos of a millimeter in size, which only consist of a few hundred cells. Which cell will develop into, for example, a skin cell or heart muscle, is only determined after a few weeks.
The researchers are particularly interested in the so-called pluripotent stem cells, which arise 4 days after fertilization. The culture embryos may also not be used for research longer than 14 days after fertilization. Well, and for some it is a few cells and no human beings (yet) and for others it is already unethical in that phase. Controversial or not, the results of a study can be life-changing.
Someone who can talk about a hereditary disease and its consequences from practice is the mother of 2 sons, Saskia Buijs. A while ago I wrote a moving article about Saskia, Max and Jip, who are all charged with the energy metabolism disease.
A chronic progressive disease that can manifest itself at a very young age or in mild form later in life. Two children are born with this disease every week, half of whom die before the age of 10 and only 70% live to adulthood. A whimsical disease in which the mitochondria, those energy factories, do not work properly.
A shortage of energy has far-reaching consequences, especially for the large organs, which no longer function properly. Max and Jip are very bright boys, but need 24/7 care. At night they lie on breathing apparatus to cope with the lung function and a cold or choking can be fatal. Life on the edge. Saskia is therefore a big proponent of culturing embryos for research. Saskia:“Should I have it done myself? Yes, right away. No doubt. If that would give me the chance to have a child without this disease. People who linger endlessly in ethical interests do not have 2 sick children of their own!”
Image used via Shutterstock
