Appointments with Cook Genetics are conducted via telehealth and will be focused on Hereditary Cancer Predispositions.
Frequently Asked Questions (FAQ) about Genetic Counseling
Please click the down arrow next to each question for a detailed answer.
Genetic Counselors are clinically-trained, advanced practice, mid-level healthcare providers who have specialized graduate education in genetics, healthcare, and short-term counseling. Genetic Counselors practice in a variety of specialties, including Oncology, Fertility, Pediatrics, Prenatal/High Risk Pregnancies, Cardiology, Neurology, and more. While many genetic counselors work in large university health systems, other genetic counselors may work for smaller clinics, at genetic testing labs, or remotely doing telehealth. Even fewer genetic counselors work in private practice.
Here at Cook Genetics, we specialize in private practice Oncology Genetic Counseling. Other appointment types may be available on a case-by-case basis.
Anyone whose personal and/or family history fits any one of "The 5 Red Flags" for hereditary cancer should have genetic counseling and possibly genetic testing.
The 5 Red Flags:
Cancer diagnosed at young ages (i.e. under age 50)
Rare cancer (e.g. ovarian cancer, pancreatic cancer, neuroendocrine tumors, sarcomas, etc.)
Multiple primary cancers in the same person (not a cancer that has spread, but two separate cancers)
Generational pattern of similar cancers (i.e. multiple generations of breast cancer, colon cancer, etc.)
Ashkenazi Jewish ancestry (an ethnic group more likely to have genetic predispositions for cancer)
If you or your family falls into any one of these five categories, genetic counseling is highly recommended.
Genetic counseling is, first and foremost, a conversation. We won't be asking you to undress, and we won't be poking or prodding you. We will sit down and discuss your personal medical history and family history of cancer (if applicable), in order to get an overarching picture of what may (or may not) be going on in your family. Oncology Genetic Counselors are specially trained to recognize patterns that might point to certain hereditary cancer syndromes running in the family, and then they can order the appropriate genetic testing.
We are experts at explaining complex scientific concepts in an understandable way. Our appointments are generally 90+ minutes long, because there is a lot of information to go through. We want you to leave the appointment with all of your questions answered and feeling empowered with your newfound information. Our goal is to break it down so that you can become your own advocate moving forward!
Genetic testing is conducted on either a saliva sample or a blood sample. To make things easy on everyone, here at Cook Genetics, we typically do a saliva test. You spit in a tube, and we ship it off to the genetic testing lab. Yes, it really is that simple, but no, it is not the same as an over-the-counter ancestry/health genetic test. The testing we offer is top-notch clinical-grade genetic testing, and it can only be ordered by a healthcare provider.
The nationally-recognized genetic testing lab conducts the test on your saliva, then they report the results back to us at Cook Genetics. It is our job to translate all that scientific jargon into something understandable that you can use to advocate for yourself and your family members.
Having a hereditary cancer syndrome is rare. Only about 10% of people tested end up coming back positive for a genetic predisposition. If you are found to have a hereditary cancer syndrome via genetic testing, the next step is to make a plan. Different genes are associated with different cancer risks. Having a genetic predisposition to develop cancer does NOT guarantee that cancer is going to happen. It just means that person is at a higher risk to develop certain cancers than the average person. Increased screening and, occasionally, preventative surgeries then become options. We discuss the pros and cons of each option extensively with you, so that you are able to make your own informed decisions moving forward.
Also, if you test positive for a hereditary cancer syndrome, there is a 50/50 chance that your first-degree relatives are also positive. First-degree relatives include your children, parents, and full siblings. Other relatives in your extended family may also be positive, depending on their relationship to you. Family members who test positive would also be at a higher risk of certain cancers. We discuss family testing extensively with you and provide you with information to pass along to your family members.
At Cook Genetics, our goal is to give you and your family the tools and knowledge you need in order to be as proactive and preventative as possible.
First and foremost, genetic counseling and genetic testing are two different things. Genetic counseling is the appointment service provided to you by a Genetic Counselor (see FAQs above for detailed description). Genetic testing is the lab test conducted on your DNA. In order to be a patient at Cook Genetics, you must first undergo a Pre-Test Counseling Visit appointment with us before we will order any type of genetic testing.
Some genetic testing labs offer "free familial variant testing". In other words, if your family member had a large panel of multiple genes tested, and they tested positive for a mutation in one gene, the lab may offer free testing for that specific genetic mutation to their family members. This free familial variant testing must typically be done within ~90 days. The "free" testing does not include full gene testing nor full multi-gene panel testing, nor does it include the price of the appointment.
You and your family member are not clones, so you do not have the exact same DNA - nor do you have the exact same family tree (there are typically family members who are related to you but not related to them, and vice-versa, depending on your relationship), nor the same hormonal/environmental risk factors! Therefore, each family member needs to undergo an individualized assessment prior to genetic testing being ordered so that the testing is appropriate for each person.
We at Cook Genetics utilize some labs that offer free family variant testing. However, we are separate entities with separate costs. Additionally, the point of the genetic counseling appointment is to discuss your personal and family history as a whole - and more comprehensive testing may be highly recommended instead (i.e. not just the one familial variant coming from one side of the family). This is all discussed extensively during your pre-test appointment.
For comparison: If you broke your arm, you would pay for your doctor's appointment, then for an X-ray, and then to have it re-set/have surgery at the hospital - these are all different services and separate costs.
There is a law in place called GINA, the Genetic Information Nondiscrimination Act of 2008. GINA says it is illegal for your health insurance company to raise your premiums or drop you from your plan, based on your genetic testing results. In other words, your genetics and family history cannot be considered a pre-existing condition and cannot be used against you. GINA also protects you from employment discrimination. Your employer cannot hire you nor fire you based on your genetic testing results, and they cannot require you to take a genetic test.
GINA does not apply to people with military health insurance, federal government health insurance, or the Indian Health Service. However, these groups do have other policies in place for similar protections. GINA also does not apply to privately obtained life insurance, long-term care, or disability insurance. However, some states do have other laws to protect these types of insurances.
If you are undergoing pre-symptomatic genetic testing (i.e. you have never had the disease symptoms yourself), we recommend that you get your life/long-term/disability insurance in place where you want it before you undergo genetic testing.
Please visit www.ginahelp.org for more information.
Nope, it isn't! Here at Cook Genetics, we offer clinical-grade genetic testing. This type of testing can only be ordered by a licensed Genetic Counselor or other healthcare provider. It is conducted at highly respected clinical genetic testing labs, which must meet many national standards for accreditation. Any genetic result reported back to us has been double checked by the lab roughly 150 times! Clinical-grade testing will give you actionable results, meaning we can trust the results and make a healthcare plan.
Ancestry/health testing (i.e. direct-to-consumer, or DTC, testing) is not the same type of testing. DTC testing is to be used for "fun" and taken with a grain of salt. The results of DTC testing are not always accurate (in fact, one study showed only about 50% accuracy). DTC results should not be used to make decisions about your healthcare. In fact, all DTC health testing results need to be confirmed using clinical-grade genetic testing.
Actually, there are now over 85 genes known to be associated with hereditary cancer. A lot has changed in the last 20 years! However, some people do not need tested for all of those genes. We will discuss your personal and family history in order to determine which type of test is most appropriate for you and your family.
Additionally, if you have tested negative for the BRCA1/BRCA2 genes in the past, or for only a few cancer genes, updated genetic testing for more genes may be indicated. We're here to help!
Examples of Hereditary Cancer Syndromes include:
Hereditary Breast and Ovarian Cancer syndrome (HBOC) - BRCA1 and BRCA2 genes
Lynch syndrome/Hereditary Nonpolyposis Colorectal Cancer syndrome (HNPCC) - MLH1, MSH2, MSH6, PMS2, and EPCAM genes
Familial Adenomatous Polyposis (FAP) - APC gene
MUTYH-Associated Polyposis (MAP) - MUTYH gene
Li-Fraumeni syndrome (LFS) - TP53 gene
Hereditary Diffuse Gastric Cancer syndrome (HDGC) - CDH1 gene
Cowden syndrome/PTEN Hamartoma Tumor syndrome (PHTS) - PTEN gene
Peutz-Jeghers syndrome (PJS) - STK11 gene
Multiple Endocrine Neoplasia type 1 (MEN1) - MEN1 gene
Multiple Endocrine Neoplasia type 2 (MEN2a, MEN2b, FMTC) - RET gene
Hereditary Leiomyomatosis and Renal Cell Carcinoma (HLRCC) - FH gene
von Hippel Lindau syndrome (VHL) - VHL gene
Birt-Hogg-Dube syndrome (BHD) - FLCN gene
Hereditary Paraganglioma-Pheochromocytoma syndrome (Hereditary PGL-PCC) - SDHA, SDHAF2, SDHB, SDHC, and SDHD genes
Familial Atypical Multiple Mole Melanoma syndrome (FAMMM) - CDK4 and CDKN2A genes
DICER1 Tumor Predisposition syndrome - DICER1 gene
BAP1 Tumor Predisposition syndrome - BAP1 gene
HOXB13-associated Prostate Cancer - HOXB13 gene
Other moderate risk breast and/or ovarian cancer genes: ATM, BRIP1, CHEK2, NBN, PALB2, RAD51C, and RAD51D
Other moderate risk colon cancer/polyp genes: AXIN2, GALNT12, GREM1, MSH3, NTHL1, POLD1, and POLE
Hereditary pancreatitis genes (with possible risks for pancreatic cancer): CASR, CFTR, CPA1, CTRC, PRSS1, and SPINK1
And many more!
***DISCLAIMER: Genetic Counselors do not practice medicine. It is up to you, the patient, to speak with your physician(s) to implement the screening/management recommendations made during your genetic counseling session(s). You will be provided with copies of your genetic testing results and genetic counseling notes so that you can show them to your physician(s).