"Testing Fate"

An article in Newsweek by a 16 year old who mulls over whether or not to get genetic testing for Huntington's disease which runs in her family. She wonders about still pursuing her dreams if she tests positive..

"On the other hand, I'm scared that I may not cope well with the test results, or lose my motivation for life. The last thing I want to happen is to lose hope. I know that whatever the result of the test, I need to stay focused on school and my goals in life. As long as I channel my energy towards causes for HD I hope to stay on the right track...My parents have taught my sister and me that all of the doubts, the "symptom searching" and the stresses can be successfully managed. They've demonstrated this by empowering themselves with involvement in the HD community. As they take us to Huntington's events, I've seen people go through the growth and adjustment caused by the rollercoaster of HD.

... Testing is a personal and emotional choice. Each individual has his or her own reasons for wanting or not wanting this information. Although the initial result may feel overwhelming, as I've seen, time is a major factor in the coping process--so is an optimistic outlook. There are no guarantees in life, so even with a positive test result, the world, as I know it, will not come to a halt. Embracing life and living it to its fullest potential is a choice, especially with the difficult reality of HD."

I think she described the importance of support by becoming involved in the HD community very well and also describes the considerations involved in any kind of genetic testing. The article discusses family issues in more depth than I quoted and is worth reading, not only for anyone facing genetic testing, but for all of us living in a world where we will face more choices about how to utilize medical knowledge.

Cardinal Rigali's letter asks Congress to amend bill

... Genetic Information Nondiscrimination Act (H.R. 493).

The bill fails to address discrimination against families based on the preimplantation or prenatal genetic testing of their child, or genetic testing performed on an adoptive child before an adoption is completed.

The article via USCCB (United States Conference of Catholic Bishops) states:

"As a result, an insurance company may misuse knowledge of a child’s genetic defect to raise a woman’s premiums, cancel her insurance, or even pressure her to have an abortion or cancel adoption plans for a child with special needs, because the company does not wish to cover the additional needs of a child who will develop an illness or disability."

A link to the Cardinal's full letter is available at the above site through USCCB.