How to Know You’re a Genetic Illness Insider
“You’re a genetic expert.
I think you’re a medical expert.
You’ve done genetic testing.
You know how to do it, so you can be an expert.”
— Dr. Daniela Molloy, genetic counselor, University of Michigan Medical School article “I would say genetic testing is the best predictor of whether you have a disease.
You can get the test at the doctor’s office, you can get it at your doctor’s clinic.
But when you’re going to have a test, you need to be comfortable, you have to be knowledgeable, you’re ready.”
— Elizabeth Wohl, geneticist and director of the Genetic Center at the University of Pittsburgh Medical Center, in a CNN interview.
“If you want to be an independent genetic counselor and you want someone who’s a genetic counselor that is not just someone who specializes in testing, I think it’s important to have that in mind.”
— Lisa Dallman, a geneticist who has helped several genetic counselors and her family navigate the medical testing process.
“I think a lot of genetic counselors are not trained to be able to identify a genetic condition.
They are not very good at diagnosis.
So when they say ‘I have a condition,’ they’re not really thinking about that as a diagnosis.”
— Genealogy expert and author John C. Rolfe, MD, a professor at the New York University School of Medicine.
“The diagnosis is the key to how you handle your genetic counseling, because it is a matter of trust and confidence.
The diagnosis is not your only role.
I know I’m not a genetic specialist.
But I think there’s an understanding that we can’t just say, ‘Well, I have a genetic disorder.’
There are many people who have a gene that’s related to their disease.”
— Linda LeBlanc, cofounder of the Genealogy Network, a non-profit organization dedicated to the public’s understanding of genetic disease.
“We don’t want to talk about the gene.
We want to look at the environment, the history, and we want to understand where our genes are coming from and what is the cause.”
— Jennifer A. LeBlanch, president and CEO of the American Society for Genetic Counseling.
“It’s important that you are able to communicate what you know about genetic disorders, and the best way to do that is to have somebody with experience doing genetic testing.”
— Susan W. O’Connor, chief of genetic testing at the Department of Psychiatry at the Johns Hopkins University School the author of The Genealogist: The Science of the Human Genome, and The Genetic Counselor: How to Get a Genetic Counselors Job and Become an Independent Genetic Counseler.
“You need to understand the genetics that’s causing the disease and the genetic factors that might be affecting it.
You need to know where the genetic risk lies.
You have to understand what the risk factors are, what the triggers are.
You also need to have some knowledge of the clinical process, what are the treatments that are available.”
— Gary D. Levenson, chief clinical officer of the National Institute of Diabetes and Digestive and Kidney Diseases, a National Institutes of Health (NIH) grantee.
“Genetic counselors are geneticists, so they have a background in genetics.
We need to talk to them about genetic tests and the risk of the genetic conditions that they are seeing.”
— Darryl F. Jones, director of clinical research and clinical education at the Genetics Center at University of Pennsylvania Medical School, in an interview with CNN.
“One of the things that’s important about genetic counselors is that they can see people who are at risk for a genetic disease and understand where that is.
If a person has a genetic problem, you are going to need to work with them to understand how that might manifest itself.
You’re not going to want to have to spend the time to see a doctor or a genetic professional.
But genetic counselors can help you understand what it means to be a genetic risk, what it’s like to be at risk, and how you might be able get help.”
— Diane C. Williams, executive director of Genetic Counselin, a national nonprofit organization dedicated “to educating people about the genetics of genetic diseases, and providing support and guidance for people with genetic disorders.”
“Genetics counselors can also be useful in helping people with a genetic diagnosis understand how they might be affected by the symptoms of the disease they are experiencing, and help them make more informed decisions about the care that they should receive.”
— James E. Cockerham, president of the Association of Genetic Therapists and a professor of medicine at Yale School of Public Health.
“They’re really good at recognizing and describing the genetic variants that may be causing the genetic problem.”
— Michael J. Pappas, medical director of genetic therapy at the Mayo Clinic, in his CNN