positive hla b27 and heredity

My mother is positive for hla b27 and is having pretty severe issues with her eyes, spine, knees ect. I have been married for about 1 1/2 years now and we are considering starting a family. Should I be tested for this marker considering the "black mark" it can put on a record? If I am positive for it as well what are the odds of passing it on to my children?

[Lisa Kessler, MS, CGC]

You have asked many important questions, and I hope that the following information is helpful to you.  As you know, the HLA – B27 allele causes an increased risk to develop ankylosing spondylitis, a form of chronic inflammation of the spine and of particular joints in the spine.  As you mentioned, it can also cause problems with the eyes called Iritis.   In addition to HLA-B27, there are most likely other genetic and environmental factors associated with this condition, so it is not only a genetic condition.   In fact, about 80 percent of children who inherit HLA-B27 from a parent with ankylosing spondylitis do not develop the disorder.  In other words, even if you were to test positive for the HLA-B27 allele, you may never develop the problems that your mother is experiencing.  

You have also asked some important questions about the impact of genetic testing and your record.  In order to help with concerns about genetic discrimination, genetic counselors often discuss some of the current laws that are in place to help protect us from genetic discrimination.  This federal law is called “The Health Insurance Portability and Accountability Act (HIPAA)”.  HIPAA protects those with group health insurance from being denied insurance or having their insurance cancelled.  HIPAA has many limitations including not protecting those who are individually insured, not offering protection for disability and life insurance, and HIPAA does not prohibit using genetic information as a basis for charging a group more for health insurance.  Because of the limitations of HIPAA, several states have enacted their own laws to provide additional protection against genetic discrimination.  

In addition to the current laws, there is legislation underway to increase protections against genetic discrimination and this is called “The Genetic Information Nondiscrimination Act” (GINA).   It is reassuring to know that some protections against genetic discrimination exist.  For those with concerns about this topic, it can help to talk with your doctor or genetic counselor.

If you are interested in learning more about HLA –B57 testing, and you have concerns about genetic discrimination, there are ways to pursue genetic testing confidentially through companies like mine, DNA Direct.   Testing can also be ordered through your healthcare provider.  

[christine519]

Thank you for your response. It was very helpful and more clear-cut than anything else I have read so far. Again, I greatly appreciate you taking the time to respond!