It’s Vital That Families Openly
Discuss Their Medical History

by Darline Turner Lee, Physician Assistant, ACSM Exercise Specialist

Article Last Reviewed: Sept. 9, 2006

My son was circumcised. In last month’s column I told you about a standoff between my husband and I over whether or not to circumcise our son. He was strongly in favor of the procedure and I was vehemently opposed because it’s an elective procedure, not a necessity-in most cases.

After about two weeks of intense e-mail discussion (we weren’t speaking), my husband and I tabled the debate. It was upsetting the two of us as well as the entire family dynamic. But as time ran short and I had to complete and submit my preadmission paperwork for the hospital (The form asks if newborn baby boys will be circumcised), the question had to be addressed. We had the inevitable “battle to the finish” in which my husband reluctantly told me some pertinent family information. Without going into detail and out of respect for my husband, suffice it to say that there is significant medical history in his family that makes my son an appropriate candidate for circumcision.

For three weeks we had been chilly with each other, hardly speaking and holding tenaciously to our positions. The whole scenario could have been avoided if he had just said at the onset, “Hey, there are some things in my family’s history that make the procedure necessary.” It’s very hard for me to understand why openly discussing medical issues is so hard for some people. I have an even harder time understanding why they won’t discuss this very important information with their families.

When I asked him about this he simply replied, “We just don’t talk about such things in my family.”

I really can’t be mad at him or his family, for we exercise denial in my family as well. My now deceased uncle who drank himself to death once drove his car into some woman’s house while on a bender. Once all the legalities were addressed, it was never mentioned again. One of my cousins was HIV positive and died of AIDS. No one mentions it. He just “passed away.” What about the fact that my uncle was a severe alcoholic and could have passed onto his children a genetic predisposition to alcoholism? Shouldn’t the family be concerned and shouldn’t we keep watch over one another so no one else gets into trouble? And as for my cousin, yes, his wife and kids were tested, but wouldn’t it be great if we, as a family, could use this tragedy to educate some of the younger cousins now coming of age and wanting to explore their sexuality?

This situation is all too common. Many people adhere to “Don’t ask, don’t tell,” or, “Don’t air your dirty laundry in public.” The question I have is, what is considered dirty laundry and when is sharing vital information with family members (i.e. your wife) airing it to the public?

Public disclosure of health information has received a lot of attention in recent years. I remember in the mid to late nineteen eighties media reports of HIV positive individuals losing their jobs, their healthcare and sometimes their lives when their medical information was disclosed. I also recall a court case while I was in graduate school in the early nineteen nineties in which a woman lost custody of her children because her ex-husband used information he obtained from her therapist to portray her as an unfit mother in court.

These and other situations created such a public outcry against privacy invasion that in 1996, the Health Insurance Portability and Accountability Act (HIPPA) was passed. This law protects against the unauthorized sharing of personal medical information. The law provides individuals protection against healthcare providers, insurers and other healthcare entities sharing personal medical information without consent. It protects citizens from having personal health information given to employers, insurers, marketers or other entities that could then use this information against them. The law was amended in 2002 to add provisions to protect against electronic medical records being altered or accessed to be sure that it does indeed protect the privacy of individuals without jeopardizing the quality of healthcare delivery or creating barriers to healthcare. HIPAA assures us that private medical issues will remain private.

While the law provides assurance that a person’s medical history will not be inappropriately released, it is both appropriate and necessary that family members be made aware of necessary facts. Share your medical history with you loved ones. It may be one of the most precious gifts you give them. As for my husband and I, we are back on track, caring for our children and once again openly communicating. I would love to think that this is the last time we’ll have such a disagreement, but I know better. I am also getting to know better than I ever dreamed, the meaning of many phrases in our marriage ceremony, in particular,

“The two joined and they became one flesh”

No longer are our choices and preferences just our own. What happens to each of us directly affects the other-and our children and families. I hope that we can break the familial “codes of silence”, to openly discuss our family history and give our children all the tools and information they will need. I’ve said it before and I’m sure I’ll say it again. If you can’t do what needs to be done for yourself, then do it for those you love and who love you.

Darline Turner-Lee has started journals full of pertinent information for each of her children.