Moral dilemmas with genetic testingBy Veita Bland, M.D. / September 30, 2016
One of the growth industries in this country is the business of knowing your own history. How many of you have seen those commercials that speak about knowing who your ancestors are and where you came from? It is so intriguing and apparently a big money maker.
To take that a step further, now for a modest fee you can see who you really are. So many of us already know for example that great-grandfather was full Cherokee on father’s side of the family. And grandfather was Blackfoot on mother’s side of the family but you do not look like any of them. What other genes are in the mix to make you who you are? That information is interesting and thought provoking to say the least.
With the advent of technologies now present in the medical field of genetics comes a burden. That burden is whether to share all of the information we can now produce and with whom.
We can now know for certain whether a person has a gene that will result in a disease we cannot cure. How should that knowledge be handled?
Should the patient be told this information especially if nothing at this time can be done? If the genetic testing shows genes that may cause death and could be passed to future children, how should this information be handled? These are real life scenarios. For example, a woman was diagnosed with a deficiency in her immune system. She chose not to share this information with her husband. No testing was done for the husband who unfortunately also had the condition and a child was born that died at six months of age from the inherited disease.
Ethical questions must be considered as more and more testing is done. Some genetic researchers in the field give examples where potential marriage mates conceal health information in order to increase their chances of marriage, especially in some developing countries.
In this country the problem is a little different. There is a big problem with getting insurance companies to pay for these genetic tests which are still quite expensive.
We are now seeing people enter their child bearing years with genetic problems in their families. They want to know if they have inherited these conditions in order to decide whether they will or will not have children. Some insurance companies have refused to pay for genetic testing. What are these people to do who may not be able to afford the testing?
The ability to search for a genetic disease has been the hope of many in medical research. It is thought that in the future, when a baby is born, he or she will be immediately scanned and any and all conditions will be accounted for and addressed. One day medical science will have the ability to deal with all conditions in the future.
We do not have that ability at this time. Is it cruel to tell a person they have a genetic disease that will surely kill them when there is no cure? How will they live their life differently? Will they chose to have children? These are moral questions that require more than a doctor’s advice to make an informed decision. With progress in medicine comes even more responsibilities in our society.
Dr. Bland’s radio show, “It’s a Matter of Your Health,” can be heard live on Wednesdays, 5:30 p.m. on North Carolina A&T State University’s WNAA, 90.1 FM. Listeners may call in and ask questions. The show is replayed on Sirius 142 at 5 p.m. on Wednesdays.