Genetic counselors come from varied backgrounds.
We have many coming from chemistry, biochemistry, psychology and biology, from the lab, from business. There are multiple doors to enter into genetic counseling. The definition refers to trying to provide a safe place to talk about very frightening, very painful issues. It's an exchange of information, listening, responding, hopefully with a conscience, and some balance and sensitivity. That is so important, the sensitivity in working with all families.
We try to balance the fear when it's appropriate and also recognize when it's not. There are times when the burden warrants the feelings of despair. And at that time, you need to validate those very genuine feelings. The role of the genetic counselor certainly has the medical information base, meaning we talk about a differential diagnosis, the natural history of the disease, prognosis, recurrence risk, testing options, appropriate referrals, recommendations. However, more recently, the DNA diagnostic tools have instigated a change for many of us - with less lecture and more therapeutic intervention, when we really face the complexity, the burdens and values of testing, particularly predictive testing.
The issues that we talk about, some of the things that were alluded to this morning by Dr. Young, reflect people's values, their goals, their own personal, private beliefs.
What are the implications of testing and their options? And what many people forget to mention is we try to help them talk about and imagine," try-on" what life will be like after the decision. It's not just the decision-making. What happens after the decision? And after the results?
We find ourselves working in many different roles. I work in pediatric genetics, adult genetics, and neurogenetics. We're being used in many different specialty clinics where physicians welcome our knowledge and realize that they can really benefit from having someone who can spend time with their families. That's the one thing we really do offer the doctors and the families. We spend time. I may meet with a family for two hours at a time. We do have a multidisciplinary team at UCSF, the counselors, the fellows, the physicians. And the physicians have varied backgrounds: pediatrics, obstetrics-gynecology, neurology, ophthalmology, dermatology. We have people with expertise in all different areas.
As I alluded to before, we're often referred kids and adults who have been through the system and now there's still no answers. Any individual, with a suspected family history of a genetic disease or condition, any couple that has experienced three more spontaneous fetal losses. You can read through this list. Essentially, genetics involves multi-system involvement. That's one of the key things that you always look for - whether there is an intellectual deficit in addition to physical findings, the phenotype. Again, you can look this list over at your leisure and if there are any questions, I'm glad to talk to you about this later.