Case Study 5: Who has a right to know?
Cheri is a recently married 25-year-old eager to start a family. Her father recently died of a dominant genetic disease. This disease does not appear until people are in their thirties, and then they slowly lose their nerve function until they die ten or twenty years later.
Cheri has a 50% chance of carrying this fatal gene, for which there is no treatment or cure for adults. (There is a cure for children, but only if they are treated immediately after birth.) If she does have the gene, each of her children will also have a 50% chance of inheriting the gene. She can find out if she has this gene either by waiting to get symptoms of the disease or through genetic testing.
She does not want to be tested because she does not feel she could handle the possible bad news. She also does not want her future children to be tested, because if they should test positive, she will know that she will come down with the disease herself (she doesn’t feel she could handle this news).
By not testing her children, she will deny them their only opportunity to be cured of the disease if they do carry the gene.
Ethical Questions: Do you think Cheri has an ethical obligation to test her children? Do you think she should be tested before having children? Should Cheri’s community/government be involved in the decision?
Your Position:
I believe that Cheri has an obligation to test her children. It's not right to possibly let her children suffer from a disease that can be cured at birth. She can't make her children suffer from their inherited disease if there is a cure! I think that it's right for Cherri to at least test her children and if they are affected cure them. I think that Cheri not testing her children, would be like the Richard Parker story. The captain and the other sailor who killed Richard would be the mother and Richard would be the kids. Richard didn't have a say in the matter, and the kids aren't born yet, but I'm pretty sure the kids would want to be cured and Richard wouldn't have wanted to be eaten. The captain and other sailor who killed Richard would be the mother because they could have done the right thing, but they didn't and Richard was eaten and Cherri doesn't want to test her kids.
Cheri doesn't have to be tested but she shouldn't be so caught up in her own problems of possibly having the disease, she would just have to live with her fate. But if she can make her children's life better, healthier, and longer why not get them tested at birth? I don't think that Cheri's community or government should be involved in this decision, because it doesn't affect them. If Cheri's neighbour had a say in the matter it would be like telling your teacher how to teach. It's their job and their decision not yours. So the government and community shouldn't have any part in Cheri's decision. Only Cheri's direct family should be involved, which would include her mother, her husband, and her husband's parents.
In science we learnt a whole lot about genetic diseases and the probabilities that they would be passed on through generations. For one of our projects this semester we even had to research a genetic disease (a sex linked trait or a chromosomal disorder). Through that project I learnt how to interpret pedigrees, punnett squares, and possible genotypes. Using that information I can then figure out the odds of having children that are affected by a genetic disorder.
Based on the information given above and my understanding of punnett squares I can come up with a couple of possible genotypes for Cheri’s family...
Cheri’s dad: Dd (heterozygous and affected)
Cheri’s mom: dd (homozygous recessive and not affected)
Cheri’s husband: dd (homozygous recessive and not affected)
Cheri can have two possible genotypes. One genotype causes her to be affected and the other causes her not to be affected. Below is a punnett square which illustrates the probabilities of each. As you can see from the punnett square, Cheri has a 50% chance of being affected by the disease and a 50% chance of not having the disease.
If we want to figure out Cheri’s children’s genotypes we can use another punnett square. For this punnett square let’s pretend that Cheri is affected, because we aren’t 100% sure until Cheri turns 30 if she has the disease or not. If Cheri isn’t affected then her children would have a 0% chance of being affected, but let’s say that she is affected. Since Cheri’s genotype is Dd (heterozygous and affected) and her husband’s genotype is dd (homozygous and unaffected), Cheri’s children and Cheri both have a 50% chance of being affected by the disease and a 50% chance being unaffected.
Based on what I’ve learnt in previous science classes and based on my morals and beliefs, I still think that what Cheri is doing it wrong. She should at least get her children tested so that they will be able to survive and be cured. Cheri may have to live with the fact that she has the disease, but at least she’ll know that she saved her children by curing them when they were born. |


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