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Tuesday, June 28, 2022
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My recent article “The Girl I Am Dating Just Told Me She is a Carrier for a Genetic Disorder” received different responses. These are two letters I received. The first was sent to give support to a couple who are carriers for the same genetic disorder and are considering marrying one another. The second letter was sent to clarify the ramifications if only one member of the couple is a carrier for a genetic disorder.

Dear Dr. Chani,

I read with interest your response to Heartbroken, the young man who found out his almost-fiancee is a carrier for a genetic disorder. I wanted to offer some insight based on personal experience. When my son began dating, I encouraged him to get genetically screened through JScreen or Dor Yeshorim. My son decided to get tested with JScreen and found out that he carries genes for two genetic disorders.

When he was dating a girl who he really liked, he discovered that the girl had undergone genetic testing with Dor Yeshorim. Since he knew he was a carrier for two disorders, he encouraged her to re-test with JScreen so she could know exactly what she carries. Lo and behold, she carried genes for the same two genetic disorders!

They faced a dilemma. Stay together knowing that they would have to do in vitro fertilization (IVF) and embryonic testing before each pregnancy, or break up. They both had been dating unsuccessfully for a few years, and they felt that they were well suited for one another. Fortunately, they planned to make aliyah and start a family in Israel where the government covers the cost of fertility treatments. Baruch Hashem, they already have adorable twin toddlers and are expecting their third child this summer.

I would like Heartbroken to know that there are happily married couples who are aware of genetic disorders they carry and who have several healthy children, each of whom was born through IVF. Maybe it would help him to recognize that, Baruch Hashem, in today’s day and age, having children when someone is a carrier for a genetic disorder is not so uncommon or difficult as it seems.

Kol tuv,

Leah

Dear Leah,

Thank you for sharing your story about your son and daughter-in-law’s decision to marry and have their children through IVF. The reality is that one never knows what is happening behind closed doors. People do not usually share this kind of private information about how their children were born. It is really helpful to know that there are couples who have chosen to marry even though they need to work around a genetic issue. Hopefully your letter will help other couples who find themselves in a similar situation.

________________

Dear Dr. Chani,

I read the letter that you received about someone dating a girl who is a carrier for a genetic disorder, and I am very confused. If one is a carrier for a genetic disorder (as I am for Gaucher’s disease), I thought the only way to pass on the disease is if your spouse is a carrier as well. My husband thankfully is not a carrier, therefore my children cannot have this genetic disorder. But my children may still be carriers for this disease, therefore they will need to be tested when they are ready to get married to see if they are compatible with their future spouse and then make a decision.

Heartbroken mentioned that the girl he is dating “carries a gene for a serious genetic disorder.” He seems to be putting the blame on her or maybe he is just misinformed or did not fully understand what the genetic counselor was telling them. I do not want his letter to give misinformation to other people who are dating. I hope people do not think that they cannot have a healthy child the traditional way if only one of them is a carrier because this is just not correct information. Please ask Heartbroken what the disorder was and why it was an issue for them.

Thank you,

Sarah

Dear Sarah,

I appreciate you writing to me to share your confusion. I imagine that if you were confused, there are probably others who read the article who might be confused as well. Hopefully, the following will clarify the implications of genetic screening for couples looking to marry.

It is important to understand the significance of getting screened for genetic disorders before proceeding with a serious dating relationship. It is not uncommon for a person to be a carrier for one genetic disorder or another. In the case of most genetic disorders, the risk chiefly exists when both members of a couple are carriers for the same disorder. If that is the case, each pregnancy has a chance of producing a healthy child, a healthy child who is a carrier of the disorder, or a child who has the disorder. This is why in Leah’s family, as described in the letter above, each embryo was screened during IVF to ensure it would be healthy before proceeding with a pregnancy. If only one parent is a carrier, a couple would not need to be concerned about having a child with the disorder. At most, they might have a child who is a carrier for the disorder.

However, this is not the case for a sex-linked gene disorder. In the case described in my previous article, the issue was Fragile-X syndrome, which is a complex X-linked genetic disorder. There are multiple levels of expression of the disorder. Since the female was a carrier, she could potentially have a child (male or female) who is unaffected, a child who is a carrier, or a child who has the disorder. This would be true even if her husband is not a carrier. This is why the couple received the advice of a genetics counselor to have children through IVF, even though the husband was not a carrier.

It is advisable for people who are dating to get genetically screened. Genetic screening in dating is a sensitive issue, and people have different approaches to it. Some people prefer to get screened through a process, such as JScreen, that lets them know what genetic disorders they may carry. Others prefer to get screened through an organization, such as Dor Yeshorim, that holds a record of the information without revealing the results. Upon request, they check the compatibility of the identity numbers of two people who have tested to let a couple know if they match for a genetic disorder or not.

Either way, genetic screening helps couples make informed decisions about the implications of their genetics and the possible effects on their children. I hope that these letters spread awareness of the importance of genetic screening and help people navigate successfully through any issues that may arise.

All the best,

Chani


Dr. Chani Maybruch is a social psychologist and relationship coach, specializing in teaching emotional connection and communication skills for over two decades. She coaches individuals and couples, teaches courses on how to become a master of relationships and provides free relationship resources at chanimaybruch.com. Learn a step-by-step method to improve your ability to emotionally connect with her new online course: The RELATE Technique™—Seven Steps to Emotionally Connect Through Conversation. Reach out to her at [email protected]

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