Should You Tell Them You’re a Carrier?
Our children are living in a much different world than the one in which we grew up and explored. They have technology at their disposal and opportunities for travel and exploration that we never imagined. They are also living in an era where the tip of the iceberg in cancer research is just being reached, and the identification of cancer genes means that we as parents have to determine what, if any, information about genetic risks we share with our kids. And we have to make this determination before we even completely and scientifically understand what roles cancer genes play in our overall health.
Genetic Risks and Children
The breast cancer gene is one of the first genes to be identified in patients and family members, and studies thus far have shown that women with this gene are 50% to 80% more likely to develop breast cancer. And as genetics work, it is likely that these genes will be passed on to future generations – at least a 50% chance. However, some doctors are not recommending parents tell their children of genetic cancer risks until their children are much older and would be tested (perhaps in their 20s).
Recently researchers from Philadelphia looked at more than 250 parents who were tested for the BRCA1 and BRCA2 cancer genes (those genes representing increased risks for breast and ovarian cancers). The journal Cancer reveals that most parents shared the test results with their children, including children as young as 10 years of age. There were a total of 505 children who heard of their parents’ test results (and the following indicate the parents’ assessments of their children’s reactions).
- 41% of the children had neutral responses.
- 28% of the children had responses of happiness or relief.
- 13% of children were concerned in general.
- 11% of children were upset, scared, or concerned with death as a result of hearing the news.
- 7% of the children did not seem to understand the information.
- 5% of the children asked questions and appeared curious.
- 4% of the children outwardly expressed appreciation for being told the information.
Should Kids be Told?
As with any new idea, discovery, or dilemma, there are opposing sides of opinion as to whether or not children should be told they could possibly carry a cancer gene.
Don’t Tell the Kids
Doctors and specialists who argue that parents should not tell their children that they are either carriers or non-carriers themselves, and there is a possibility they are carrying a cancer gene, say the rewards of knowing don’t outweigh the negative emotions. New York University’s Langone Medical Center’s Dr. Freya Schnabel does not support parents telling their children of the genetic risks. She says that the knowledge does the children no good and “isn’t constructive” in their childhood. Because children aren’t currently tested for the gene, they are unable to confirm or dispel their anxieties about whether or not they are carriers.
Some of the anxieties and fears that children might think include:
- I am going to get cancer.
- I know someone who developed cancer and died.
- I don’t want my friends to know because I don’t want them to look at me weird.
- I’m not in control of my own body.
- My mom or dad is going to get cancer and die.
- My brother or sister is going to get cancer and he or she will die.
- How much does cancer hurt?
As with any discussions with kids, consider their ages, emotional intelligence levels, and the context of the information being shared.
Tell The Kids
Assistant Professor in the Department of Clinical Genetics at Fox Chase Cancer Center in Philadelphia, and lead author of the study, Angela R. Bradbury, MD, says that many parents tested for genetic cancer risks tell their children and the conversations are not negative. However, she also says that the full effect of telling children is not clear, and doctors have not yet agreed upon when and how children should be brought into the discussion of genetic risks for cancer.
While I have not been tested for cancer genes, I do know that I have a strong family history of cancer and if I ever decide to take a genetic test I would be honest with my children about the results in age appropriate ways. I have also shared this family history with my children from day one. They fact that my Uncle Pat died from melanoma is an added reason and motivation to use sun screen – and the kids do this without hesitation. We also have watched close family members struggle with breast, prostate, and brain cancer. One of my sons was tested for cystic fibrosis because of his symptoms and a family risk (thankfully negative). We have to mark those boxes at their childhood check-ups that ask for family histories of epilepsy, heart disease, and stroke.
I am raising my children to be conscious of their health – and this includes giving them the information they need in order to learn how to lead healthy lives. Health history doesn’t have to be frightening, but imagine how scary it would be to suddenly hear for the first time at age 20 that you are at a high risk for breast cancer. I’m guessing many children would feel betrayal and question other decisions and discussions along the way. Our children don’t have to know all of the frightening details and statistics, but they can be supplied with these terms, words, and genetic information as part of their growing vocabulary.
Article source: http://feedproxy.google.com/~r/BetterParenting/~3/6X91jVT1NvU/