Introduction

Background: Genetic Counseling - To Know or not to Know?

You are members of a panel of genetic counselors working for MyGene.come. MyGene.com is a research institute that studies the social and medical outcomes of providing genetic information to patients and their families.

In the past your company have advised families that were considered to be at risk of carrying certain genetic disorders. In most cases you conducted pre-natal testing, that is - genetic testing of infants (by [|amniocentesis]) and their parents ([|Carrier Screening]) before birth. Occasionally couples asked your company for advise as they were planning their future family, even before they decided to get married. Overall, you learned that some families benefited from knowing their possible risks. Other families, however, have concluded after the fact that they had rather not known what their risks are, for various reasons.

Those that benefitted were able to prepare for developmental problems that their newborn would have. In some cases where the diagnosed disorder was very severe, the parents decided to discontinue the pregnancy. In many cases, the newborn was found not to have the suspected disorder, parents' anxiety over the issue would be replaced with excitement over the upcoming new baby.

On the down side, the diagnosis of a disorder would lead parents to the painful decision if to keep the pregnancy. In cases where the disorder was not severe, or was treatable, parents felt that they would have rather not known about it ahead of time. People that were found to be carriers of certain disorders felt that this knowledge placed them in a vulnerable position when looking for a partner. In extreme cases, the diagnosis lead couples to separate.

Other considerations are the cost of the genetic tests, which can sometimes be very high. And compare to that - the cost for the public of supporting families of children with severe genetic disorders.

With these complexities in mind, MyGene was hired by the government to write a manual for genetic counselors and medical practices as a whole. This manual would direct genetic service providers to perform or to not perform genetic testing. Before you discuss your options, it woudl be necessary to become educated about genetic disorders which would vary in severity, inheritance patterns, and impact on the families and their communities.