Genetic Counseling at the Bienes Cancer Center
Genetic Counseling Overview
The majority of cancers are sporadic in nature, meaning that they are caused by lifestyle and environmental factors, but some cancers are caused by changes in our genes that are hereditary or passed on to us from our mother or father. All cancer is initiated by altered genes but only 5-10% of cancers are actually due to a hereditary mutation. The Cancer Risk & Prevention Program at Holy Cross Hospital is designed to estimate your personal risk of cancer, the probability that it is hereditary and arm you with information to help you reduce your risk of cancer or cancer recurrence in the future. Team up, with our genetic counselors, physicians and other cancer specialists to help us beat cancer.
What is Genetic Counseling?
Cancer risk genetic counseling entails consulting with a team of healthcare professionals (usually a genetic counselor and/or physician ) to review personal and family history, help determine cancer risk, and provide recommendations to reduce cancer risk and detect cancer earlier.
What is Genetic Testing?
Genetic testing for cancer risk is used to determine if a genetic change, called a mutation, is present in genes that predispose persons to developing cancer at an earlier age than would be expected. Having a predisposition to developing cancer does not mean one will definitely develop cancer, but it does increase the risk of cancer. Knowing this will enable the patient and the doctor to make healthcare decisions to prevent or reduce the chances for cancer.
Genetic testing is only appropriate when a person has had a genetic cancer risk assessment by a qualified genetic counselor or healthcare professional. The information gained from testing is likely to provide information that will be useful in directing the healthcare of the person and/or family.
What will happen during the Genetic Counseling appointment?
EA genetic counselor will evaluate the likelihood of a genetic mutation that is responsible for cancer in an individual or their family and help people understand the genetic, medical, psychological and other issues related to genetic testing.
Genetic counseling before genetic testing helps individuals make a truly informed decision about whether testing is right for them. If testing is done, the patient will meet with the counselor again to explain the meaning and implications of the test result, including determining if further testing is necessary.
Are the test results Confidential?
Test results will be part of the medical record, but they will never be shared with anyone, by law, other than the individual, without their permission. If a health insurance company paid for the testing, the insurer could ask for the test result. Many people are concerned about discrimination based on positive test results. There are several laws that protect the individual from discrimination based on genetic predisposition.
The Genetic Information Nondiscrimination Act (GINA) of 2008
The Genetic Information Nondiscrimination Act (GINA) prohibits the use of genetic information in health insurance coverage decisions or employment. This legislation prohibits insurance companies from determining health insurance eligibility or premiums based on genetic test results or family history. In addition, GINA prohibits employers from using genetic information in decisions regarding employment, compensation, conditions or privileges of employment. For more information, see Hudson et al. New England Journal of Medicine 358: 2661-63, 2008.
Health Insurance Portability and Accountability Act (HIPAA)
In August 1996, HIPAA was signed into law which expressly states that persons who are covered by a group health insurance policy of 50 or more individuals by their employer may not be denied a similar policy when they change jobs due to genetic information or other pre-existing conditions. This law was a first step in providing federal protection against genetic status discrimination. However, it does not protect self-employed individuals or those working for small employers, so GINA was later passed which is more comprehensive.
627.4301 Abstract: Health insurers may not require or solicit genetic (b) information, use genetic test results or consider a person´s decisions or actions relating to genetic testing in any manner for any insurance purpose. This section does not apply to the underwriting or issuance of a life (c) insurance policy, disability income policy, long-term care policy, accident-only policy, hospital indemnity or fixed indemnity policy, dental policy, vision policy or any other actions of an insurer.
760.40 Genetic testing; informed consent; confidentiality; penalties; notice of use of results.
(1) As used in this section, the term "DNA analysis" means the medical and biological examination and analysis of a person to identify the presence and composition of genes in that person´s body. The term includes DNA typing and genetic testing. (2)(a)Except for purposes of criminal prosecution, except for purposes of determining paternity as provided in s. 409.256 or s. 742.12(1), and except for purposes of acquiring specimens as provided in s. 943.325, DNA analysis may be performed only with the informed consent of the person to be tested, and the results of such DNA analysis, whether held by a public or private entity, are the exclusive property of the person tested, are confidential, and may not be disclosed without the consent of the person tested. Such information held by a public entity is exempt from the provisions of s. 119.07(1) and s. 24(a), Article I of the State Constitution. (b)A person who violates paragraph (a) is guilty of a misdemeanor of the first degree, punishable as provided in s. 775.082 or s. 775.083.
Who should consider genetic counseling?
Anyone who has a personal or family history of:
Multiple cancers in an individual Bilateral cancer or multifocal disease Cancer at an exceptionally early age Multiple generations with cancer Male breast cancer Clustering of rare cancers in the biological family An identified cancer gene mutation Any known cancer syndrome such as:
Hereditary Non-Polyposis Colorectal Cancer, Familial Adenomatous Polyposis, Hereditary Breast and Ovarian Cancer syndrome, Li-Fraumeni Syndrome, Von Hippel-Lindau Syndrome and Multiple Endocrine Neoplasia
How do I make an appointment?
For more information or to make an appointment, call the Clinical Cancer Genetics Office at 954-267-7704. Leave the telephone number where you can be reached, as well as your reason for wanting a genetic consultation.
In order for the consult be accurate and comprehensive, questionnaires will be mailed and must be returned to the counseling office prior to the appointment. The consultation itself will consist of:
A detailed analysis and evaluation of the family medical history. A discussion of the genetics of cancer development and the specific hereditary cancer syndrome that may be applicable. An assessment of cancer risk based on family and/or personal history of cancer. Recommendations for screening prevention and detection. Discussion of the availability, advisability, risks and benefits of testing for a possible inherited family syndrome. A letter summarizing the details of the consultation and recommendations will be sent to the patient after the consultation.