The origin of genetic counseling was during the period prior to the days of the world wide web. The information available for patients and families was from clinicians and genetic counselors. In addition to enormous amounts of information that is now available on genetic disorders, access to this information is readily available to those interested in learning about multitudes of genetic disorders, including patients and families members of those with a genetic disorder. What are the implications of these developments for genetic counseling?
There are significant advantages as well as disadvantages to the role of information on the web on all aspects related with genetic disorders. The abundance of information available to patients and families as well as professionals are of great help if used appropriately.
When making a diagnosis, information available on the internet can be used in making a clinical diagnosis, in ordering the appropriate test and identifying the lab that offers the desired test.
The challenge for genetic counseling is the potential that information available on the internet may not be available or affordable in a given country. An example is the pharmaceutical therapy. Another is use of crisper technology in the treatment of genetic disorders. Many of these treatments are exorbitantly expensive and/or available only is some countries.
Practicing genetics counselors may be aware of these treatments. What is the ethics in discussing or not discussing the availability of these treatments with patients and families? It is also possible that patients and families may come across the information regarding treatment from media, including the internet. They may bring up this information during counseling sessions. How should genetic counselors address questions about treatments that are exorbitantly expensive and/or available only is some countries, when brought up by the patient or family?
