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Provides information about improving the health of babies by preventing birth defects, premature birth, and infant mortality. International Society of Nurses in Genetics Users can search for information about advocacy support groups related to specific genetic conditions, the clinical features of a wide number of genetic conditions, and updates on management, treatment, and other related topics. Provides accurate and reliable information developed by the advocacy organizations which form the Genetic Alliance. URL: E-Mail: and Rare Diseases Information Center (GARD)Į-mail: Organization of Rare Diseases (NORD) The organizations listed below are excellent sources of information about genetic diseases that can be helpful to patients: Patient advocacy groups generally provide the best and most up-to-date information on specific conditions. Before providing patients with any educational materials, please be sure to review that the information is produced by a credible source and is current.īooks and pamphlets are most widely distributed and appreciated by patients, even by patients who are web-savvy. In general, though, your patients will require information you may not have. Patients rely most upon their primary health care providers for information related to their condition. The patient may also choose to share the letter with other family members. The summary is often provided in the form of a letter which serves as a permanent record of the relevant information discussed, as well as relaying additional information that may have become available after the final counseling session. Genetic counseling referrals for other family members for risk assessment are then discussed and it may be necessary to refer relatives to other genetic counselors due to geographical and other constraints.Īt the conclusion of the genetic counseling sessions, the patient should be offered a written summary of the major topics discussed. If the genetic test is positive, testing should be considered in additional relatives of this individual. Information about community resources and support groups are provided to the patient/family. In particular, psychological issues such as denial, anxiety, anger, grief, guilt, or blame are addressed and, when necessary, referrals for in-depth counseling are offered. However, the post-test session involves more than the provision of medical information and often focuses on helping families cope with the emotional, psychological, medical, social, and economic consequences of the test results. If the patient decides to have genetic testing performed, the genetic counselor is often the point person to communicate the results to the patient/family. Referrals may be made to specialists regarding specific issues which fall outside the scope of genetic counseling practice. General questions relating to suggested treatment, therapy, and the function of related proteins are also addressed. During the initial genetic counseling visit, the genetic counselor will determine why the patient/family is seeking genetic counseling, identify what information they wish to obtain from the session, collect and record a family history, and assess and record the psychosocial history of the patient.Īmong the topics discussed during a pre-test session are the clinical presentation of the condition(s) the patient may be at risk for, the pattern of genetic inheritance of the condition, risk of recurrence, available testing procedures and test limitations, reproductive options, and follow-up procedures if needed. It is not unusual for multiple genetic counseling sessions to occur and, at a minimum, include a pre-testing and post-testing session. For more information about genetic counseling or to find a genetic counselor in your area, please see the National Society of Genetic Counselors’ web-site at. The most common indications for genetic counseling include advanced maternal age, family history of a genetic condition, and suspected diagnosis of a genetic condition. They serve as a central resource of information about genetic disorders for other health care professionals, patients, and the general public. Genetic counselors also provide supportive counseling services, serve as patient advocates, and refer individuals and families to other health professionals and community or state support services. In particular, genetic counselors can help families to understand the significance of genetic disorders in the context of cultural, personal, and familial situations. They help to identify families at possible risk of a genetic disorder, gather and analyze family history and inheritance patterns, calculate risks of recurrence, and provide information about genetic testing and related procedures. Genetic counselors work as part of a health care team, providing information and support to families affected by or at risk of a genetic disorder.
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