Rockford Register Star
  • Dr. Murray Feingold: Genome sequencing: Is it ethical or not?

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  • Recently, there was a provocative article in the New England Journal of Medicine titled, "Prenatal Whole Genome Sequencing - Is the Quest to Know a Fetus's Future Ethical?"
    With the advent of Whole Genome Sequencing, it is now possible, when the baby is still a fetus, to determine a great deal of genetic information about him or her. This includes the risk of childhood diseases, the presence of genes that can cause various types of cancers, diabetes, serious genetic syndromes and even other non-illness traits such as baldness.
    There is ongoing debate concerning how much information the parents should be given about the genetic makeup of their fetus. At the present time, there is agreement that parents should be given information concerning genetic conditions that will be of direct benefit to the child. For example, a condition in which some type of treatment is presently available.
    However, many believe that parents should not be informed if the fetus has a gene that causes a disease in adult life, such as Huntington's disease, that does not, thus far, have any treatment. And there is another problem. Many times the results of gene testing show gene abnormalities or mutations in which the significance or consequences of these mutations are unknown. These mutations could cause some type of serious disease or they may have no impact on the child. Should parents also be given this information?
    The authors of the article believe that parents should have the right to all of the genetic information available about their fetus. This information should be given to the parents by a geneticist or genetic counselor.
    The parents are the ones who are responsible for caring for and raising their children and are entitled to have this information.
    Others disagree believing that knowing their child will have some type of serious untreatable adult-onset disease will place a huge psychological burden on parent and child. And, giving parents information about the presence of abnormal genes whose significance is not known may result in excessive worry and cause more harm than good.
    Also of concern is that there are not enough geneticists and genetic counselors available to explain and discuss the significance of the genetic findings to the parents.
    There is a sense of urgency regarding the best way to address these moral and ethical issues, because they are not five years away, they are with us today.