Sperm from banks not guarantee of healthy child

Wednesday, February 22. 2012

Sperm from banks not guarantee of healthy child

A couple in Texas is suing a sperm bank in New England because their child has cystic fibrosis. Cystic fibrosis is a devastating disease that is caused by mutations in the CFTR gene. People with cystic fibrosis have mutations in both their copies of the CFTR gene; one mutation from their father and one mutation from their mother. The Kretchmars are suing because the sperm they purchased to have their son, Jaxon, carried a cystic fibrosis mutation. So did Mrs. Kretchmar. Now Jaxon has CF. From CBSDFW.com:

The Kretchmar home is filled with the hum of a breathing machine and the sounds of Mario racing around a television screen watched by 22-month old Jaxon.

“MMMMaaarrrrioooo…,” he mutters under the clear mask which covers most of his tiny face. He’s yelling, but it’s hard to understand, because his voice is so muffled and his body is shaking. The shaking is a good thing. The special vest he is wearing, while he getting his breathing treatment, helps shake the congestion loose inside his little body.

Jaxon is battling cystic fibrosis. He was diagnosed just days after he was born. The new vest, breathing treatments, up to 20-pills a day. It’s all part of fighting the pulmonary disease.

In 2009, the Kretchmars turned to the New England Cryogenic Center, NECC, near Boston, when they needed help conceiving Jaxon. The sperm bank’s website talks about having a “healthy baby.” It states: “No specimens are released until it has been tested” for a list of diseases including cystic fibrosis....

The Kretchmars chose donor N170. The questionnaire they received described him as a dad, a criminal justice major, and a Catholic man with clean family health history. The Kretchmars bought three vials of N170. And, on April 17, 2010, Jaxon was born.

There is so much going on here it is almost too much to analyze. (Honestly, every time I read this I trip over the fact that the sperm donor was labeled as "Catholic.") Setting the commodification of life aside, the harsh reality is there are no guarantees when it comes to genetics.

I have tested people for cystic fibrosis for years. There are over 1000 (and counting) known mutations in the CFTR gene that can cause cystic fibrosis. Most labs only test for the 70 most common ones. The other mutations are considered private family mutations. I am sure there are some mutations in minority populations that have yet to even be documented. It is quite possible that the sperm donor carries a mutation not on the normal panels for CF testing.

There are many other genetic diseases like CF where a limited number of the most common mutations are part of the testing. Anything else maybe missed. So a "negative" in genetics does not mean you are not a carrier for some genetic disease. It means that you are not carrying any of the specific mutations the lab tests for.

Most of us are carriers of some devastating genetic disorder and we don't know it. (In the case of CF, 1 in 25 Caucasians in a carrier.) There is absolutely no way any sperm or egg bank could provide "disease-free" gametes.

But in this culture where children are ordered up to our specifications, we want to have recourse when the product we are sold is "defective." I feel terrible for the Kretchmars and for Jaxon. (There are some promising treatments for CF on the horizon.) But the reality is that children are not commodities that we can ensure will turn out perfect.

This is the major flaw in prenatal eugenics: the assumption that genetic disease will disappear if we can just make sure no one with genetic disease is born. But no matter how good or pervasive genetic testing gets, there will always be children born with genetic disease. We need to remained focused on curing the disease instead of trying to eliminate the people with the disease.

Posted by Rebecca Taylor in Reproductive Technologies at 07:05 | Comments (4) | Trackbacks (0)

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Alright there are facts about this situation that you would need to know to understand it better. For example, Jaxon has two COMMON mutations, delta f508, two copies of this. It is found in the most common testing. (I am a family friend and am very familiar with the whole thing). They didn't "order up" a child. They took the basics into consideration when choosing a donor. Him being Catholic wasn't one of these, it just happened to be in the basic profile. Had the bank run any tests at all, they would have caught this specific mutation. Then in the article it also went on to say that testing was never done for HIV, etc for most of the samples from this specific bank. Their goal is not to get free money. Their goal is to make the situation known and to work on prevention of other children suffering unnecessarily. The test that would have caught this was a very basic test run on both my husband and I when we conceived our first child. This situation should not have been treated any differently. Please learn ALL the facts before giving an opinion that does not take these in to consideration.

#1 Heidi on 2012-02-23 17:29 (Reply)

Heidi,

Thank-you for the comment. I am free to comment on any story in the public square as are you.

The fact that Jaxon has 2 common mutations (information not included in the article) does not change the point of this post at all.

Sperm and egg banks pretend they can give you a healthy child because they do "genetic screening." There is no amount of genetic screening today that can ensure a healthy child. I was simply trying to burst that eugenic (and erroneous) perception of purchasing gametes.

Jaxon has CF. Society can focus their money and efforts on curing this disease or ensuring that no one with CF is born. I argue for the former because there will always be children with CF. Trust me when I tell you there are those that simply want to focus on the latter as if that "cures" disease.

I have already prayed for Jaxon and his family and will continue to do so. I hope treatments on the horizon will give him a long and healthy life.

As for sperm and egg banks in general, if you are purchasing gametes off a menu according to your preferences, that is "ordering up" your children. (I mentioned the Catholic label because the DONOR, according to our faith, committed grave sin by "donating" sperm and fathering a child he will not raise, not because of any preference of the family.)

#1.1 Rebecca Taylor on 2012-02-24 06:07 (Reply)

I get what you are saying. The initial blog posting felt a bit like an attack on the family. Many don't understand why the lawsuit is in place. The whole situation is for awareness about the empty promises and lack of regulation there is on the industry as a whole. They realize that there is always a risk. In their specific situation basic screening would have prevented this with the specific donor they chose. Since this lawsuit has started, the bank is already being forced to make changes, which is a good thing. Honestly, in the end, this is what the family wants. They know about a treatment for him that is 5 years out. If they can keep him healthy enough, this has real promise. It is a constant uphill battle to keep him healthy as his symptoms have been more advanced than they hoped. As for this being a sin on the donors part, well, that is on him. Thank you for taking the time to address the situation. They do indeed make empty promises and since this is technically the medical field, people trust them without question (especially when their drs recommend a specific bank like in this situation).

Sperm from banks not guarantee of healthy child

Mary Meets Dolly

Wednesday, February 22. 2012

Sperm from banks not guarantee of healthy child

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