Frequently Asked Questions
Why did my doctor refer me to genetics?
What is a genetic counselor and the genetic counseling process?
What can I expect when I schedule an appointment?
How do I cancel or reschedule my appointment?
Why does it take so long for a genetics appointment?
What are you doing to shorten the wait?
How do I prepare for my appointment with genetics?
Who will I see when I come in for my appointment?
I don't live in Ohio, can you help me coordinate insurance and appointments?
When are the appointment times/days?
What happens at the appointment?
Will my insurance cover a visit to genetics and/or genetic testing?
What is your policy on confidentiality?
What is genetic testing?
Do you offer paternity testing?
Why did my doctor refer me to genetics?
Geneticists specialize in determining the underlying reason for why a person has a rare condition or has an unusual presentation of a common condition. There are subspecialities within genetics. You may have been referred to genetics at the Cleveland Clinic because you or a family member were diagnosed with cancer at a young age or because you have features of an inherited cancer syndrome.
Your child may have been referred to genetics because of developmental delay, autism, a birth defect, a known genetic syndrome or a variety of other reasons.
Pregnant women and couples considering starting a family may be referred to genetics to find out their chances of having a healthy baby and also to discuss the testing that may be available to address any increased risk they may have for having a baby with a problem.
What is a genetic counselor?
A genetic counselor is a health professional with a graduate degree (usually a masters in genetic counseling) and experience with medical genetics and counseling. Genetic counselors take on many roles that are helpful to patients, from educator to social worker to advocate, while also assisting the physician by collecting the pertinent information to make a diagnosis. We have expertise in genetic testing, and discussing testing options, helping people decide whether to undergo genetic testing, and explaining the results are all things you may cover in a session with your genetic counselor. Genetic counselors at the Genomic Medicine Institute see patients and also have other responsibilities, such as providing genetics education through public speaking engagements and coordinating research studies. Our access to cutting edge research being done in the GMI and our extensive network of colleagues enable us to bring scientific advances to our patients as quickly as discoveries are made.
What is genetic counseling?
Genetic counseling involves a meeting with a genetic counselor and geneticist to discuss genetic or inherited conditions. Genetic counseling seeks to translate complex scientific information into practical information that is useful to the patient and other family members. Usually the counselor asks many questions about the individual’s family history. The family history information is used to help make a genetic diagnosis, to determine a person’s risk for developing a genetic disorder, or to determine the risk of having a child with a genetic disorder. Medical information is also collected and the geneticist and genetic counselor will assess the family's medical needs, as well as their emotional, psychosocial and other needs.
What should I expect when I schedule an appointment?
If you are a new patient and are being seen in our Thursday afternoon cancer genetics clinic by the GMI Director, Dr. Eng, or by Dr. Natowicz you will likely receive a phone call from the genetic counselor that you will meet when you come in for your appointment. New patients who are scheduled to see Dr. Moran may also be called in advance by a genetic counselor. These phone calls are usually made within a week of your appointment, and it is our opportunity to collect information from you about your family history and the medical problems or concerns for which you or your child have been referred to genetics. We need to know about both sides of the family, back to the patient's grandparents. For pediatric and adult patients, we focus on family members with similar or related problems to the child who has been referred to clinic. For cancer referrals, it is very helpful to us if you ask your family members specific questions about the cancers they have had. We like to know the age of diagnosis of the first cancer, if cancer was detected in one or both breasts, ovaries, etc., if the person was a smoker or may have been exposed to potentially cancer-causing agents, and specifically where the cancer occurred (if possible, find out if cancer in the abdomen was ovarian, colon, stomach, etc.).
How do I cancel or reschedule my appointment?
Please call our Patient Service Representative at 216-445-5686 to cancel or reschedule an appointment. We ask that you provide us with as much advance notice as possible when canceling or rescheduling, as this enables us to move patients off the waiting list so that they may be seen sooner.
Is there anything I can/should do before my appointment?
Generally, it is helpful to have a record of any surgeries or medical procedures that have taken place. Also, please make arrangements for any physicians you've seen outside of the Cleveland Clinic to give you copies of medical records (including test results, letters, etc.). It may be necessary to sign a medical release form. If you or your child has seen many doctors, a list of their names would be beneficial. Finally, go over your family’s medical history and ask if anyone has had similar problems, learning problems, birth defects or miscarriages. Ask about the ages at which these conditions were diagnosed. If you are being seen for a personal or family history of cancer, please find out as much as possible about the cancers your relatives have had.
Who should I bring with me to the appointment?
If you have a spouse, family member or close friend that you would like to have with you for support, then you should bring them with you to the appointment. Also, if several members of your family are affected with, or are at risk for, the same condition, then it might be helpful for those individuals to accompany you to your appointment as well. However if a family member would like to be fully evaluated, he/she should also schedule an appointment.
Do I need a referral?
Our office does not require a referral in order to schedule an appointment for genetic counseling. However, some insurance companies require a referral before providing coverage for genetic counseling or testing. Contact your insurance company to find out if a referral is necessary for coverage.
Why does it take so long for a genetics appointment?
The Genomic Medicine Institute is a rapidly growing, and unique, institute within the Cleveland Clinic. There is not only a great demand for our services, but most of our physicians and genetic counselors are also involved in research and education. Therefore, we are able to schedule patients only at certain times of the week. We always reserve time slots for patients who need to be seen quickly. Please know that we are doing our best to meet your needs quickly and completely. We feel that, in addition to providing excellent patient care, it is our mission to advance research and education in genetics, which we believe also benefits all of our patients in the long run.
What are you doing to shorten the wait?
We have a Wait List, from which we call patients when we have cancellations. We encourage you to ask about the Wait List when scheduling your appointment and we will try to get you in to see us sooner whenever possible.
Who will I see when I come in for my appointment?
Genetic counselors will be involved in most patients' appointments. At the time of the appointment, you can ask the scheduler which genetic counselor and physician you are going to meet with during your visit. The genetic counselors work with several different physicians, each of whom has various overlapping areas of expertise. Pediatric patients are seen by Dr. Marvin Natowicz, Dr. Rocio Moran, or Dr. Carol Crowe. Cancer counseling patients are seen by Dr. Charis Eng. Adult genetic counseling patients may be seen by any of our geneticists, depending on the presenting issues. Prenatal patients may be seen by Drs. Natowicz or Moran on the Cleveland Clinic's main campus, or in conjunction with one of the high-risk obstetric specialists out at one of the Clinic's satellite centers.
I don't live in Ohio, can you help me coordinate insurance and appointments?
The Cleveland Clinic offers special services to patients traveling from out-of-state through the Medical Concierge. The services offered include assistance with coordinating appointments, helping with airline and hotel reservations (and providing discounts when available), and arranging ground transportation. The phone number is 800-223-2273 ex. 55580 and email address is medicalconcierge@ccf.org.
When are the appointment times/days?
Cancer/Adult – Dr. Charis Eng
Sees patients on Thursday afternoons.
Pediatric/Adult/Metabolic – Dr. Martin Natowicz
Sees patients on Wednesdays.
Pediatric/Adult/Metabolic/Cardiovascular – Dr. Rocio Moran
Sees patients on Mondays, Tuesdays, and Wednesdays.
Pediatric/Adult – Dr. Carol Crowe
Sees patients one Monday morning per month.
What will happen at my appointment?
Appointments vary depending on the reason for the visit. In general, you can expect to give a medical and family history, if this hasn't already been done over the phone. A physical exam may be necessary, especially for pediatric patients or others who are seen in the T Building. The geneticist and genetic counselor may talk with you about possible diagnoses or may be able to give you a definitive diagnosis. Genes, genetic syndromes, inheritance patterns, and available genetic testing may be part of the discussion. Frequently, patients come away from a genetics visit with helpful explanations about their conditions or risks for having or passing on a condition, a sense that they have been listened to, and resources to help them get proper medical care and support. For specific information about different types of appointments, visit our prenatal, pediatric, adult, and cancer counseling summary pages.
How many visits will I need?
The number of visits that you will need depends on the reason for your appointment. For pediatric consultations, it may take several visits to fully evaluate your child. For adults who are interested in genetic testing for inherited predisposition to certain cancers, at least two visits will be required. Adults coming in for pre-conceptional or prenatal counseling often come for one appointment, but sometimes more than one visit is necessary. For other types of adult visits, it will depend on your specific situation.
What is genetic testing?
Genetic testing is a type of laboratory test that looks for changes in a person’s genetic material (DNA, genes or chromosomes) or in the products that the genes make. Most times genetic testing is done by taking a blood sample, but sometimes other body samples (like cheek cells or skin) are needed. There are many genetic conditions for which there is no testing available. So, not everybody who comes to CPGH for genetic counseling will be able to have a genetic test. The physician and genetic counselor that you speak with during your appointment will explain if genetic testing is available or advised. For example, they will tell you how and where it is performed, who in the family is the best person to be tested first, and how long it will take to see the results. As a general rule, ALL genetic testing results are given in person during a follow-up genetic counseling session. Finally, because many genetic tests are expensive and not always covered by insurance, we recommend that each person check with his/her insurance company about coverage prior to having testing.
What is the difference between a genetic condition and an inherited condition?
A genetic condition is a disease or syndrome that is caused by a change in our genetic material (DNA, genes and chromosomes). An inherited disease is a type of genetic condition that involves genes which may be passed on from parent to child. Many genetic conditions are not usually inherited. For example, Down syndrome is a genetic condition that typically is not inherited. In CPGH, we see people with genetic conditions that are not inherited, as well as those that are. It is our job to determine if and how a condition is inherited, and to help our patients understand these concepts.
Will my insurance cover this?
Genetic counseling and genetic testing are often, but not always, covered by insurance companies. Insurance coverage depends on your specific policy and the reason for your genetic counseling visit. You can find out if genetics services are covered by calling the customer service phone number on your insurance card. It is the patient’s responsibility to contact his or her insurance company regarding deductibles, out-of-network approval, and/or preauthorization. The insurance company may ask for specific codes or test names in order to determine coverage. You can call our office and speak with a genetic counselor to get this information. For more information about Cleveland Clinic billing policy and financial assistance, visit Understanding your Bill.
What is your policy on confidentiality?
There are laws in place to help protect people from health and employment discrimination. All CPGH information is kept in your Cleveland Clinic chart. Records, including test results, are not given to anyone without your permission. Furthermore, none of your medical information would be given to other family members without your permission. Likewise, if you are coming in to CPGH to talk about another family member’s genetic test results, you must bring a copy of those results or have the relative call us prior to the appointment to give their consent to discuss him or her during your appointment. As required by law, we follow HIPAA regulations to keep your medical and genetics records secure.
Do you offer paternity testing?
Paternity testing compares DNA (from blood or cheek cells) from different individuals to find out if they are biologically related. The most common reason for paternity testing is to identify a child’s biological father. This testing is not performed at the Cleveland Clinic, and we do not coordinate this testing. Many commercial laboratories provide accurate paternity testing. Three such labs are listed below. The Cleveland Clinic is not affiliated with these laboratories and does not endorse them. They are listed only for informational purposes. For more information, contact the paternity testing labs directly.
GeneTree DNA Testing Center
888/404-GENE
DNA Diagnostics Center
800/613-5768
Beta Paternity DNA Lab
800/798-3810