DNA Banking

The following information is intended to promote the awareness, understanding and utilization of DNA banking by both health care practitioners and the general public. Health care practitioners may find this information, including the patient oriented brochure available through the link at the bottom of the page, suitable to share with their patients.

There are many families that have a strong history of disease, or individuals who have health problems that are suggestive of a genetic condition, for which current technology cannot determine a genetic cause. However, the rapid progress of research may lead to the identification of the cause of these genetic conditions in the future. Genetic testing may then become important for determining whether other family members have inherited a genetic risk for the disease.

DNA banking is a tool that can help ensure genetic material from an affected family member is saved for future genetic testing. DNA banking involves drawing of a blood sample and sending it to a qualified laboratory to extract and store the genetic material (DNA). This allows DNA from an individual with a known or suspected genetic condition (e.g., cancer), to be available for future use. Testing for disease or increased susceptibility can then be pursued at a more convenient time or when new genetic testing becomes available.

DNA banking is important because it is generally recommended that an affected family member (someone who has had the medical problem) be the first person to have genetic testing to determine if there is a detectable change in their DNA, called a mutation. If a mutation is found, it provides the basis for genetic testing (and comparison) in unaffected relatives at risk. In this way, increased risk for the condition can be confirmed or excluded in relatives.

DNA banking is an appropriate consideration for individuals affected by disease who are concerned about the risk for other family members. DNA banking may be an appropriate consideration when one of the following conditions occurs in a family: cancer, Alzheimer’s disease, Parkinson’s disease or children with unexplained birth defects or mental retardation. Candidates for DNA banking would include families undergoing evaluation for these and other genetic syndromes for which there is currently no genetic test available, or when an affected family member is terminal and there is not time for traditional genetic evaluation and/or testing.

Individuals and families are frequently not referred for a genetics consult until an affected family member is deceased or in the end stages of life. At this time, families are vulnerable, hesitant to engage in the involved process of genetic counseling, reluctant to put any additional burden on the dying relative, and dealing with many other issues and emotions. Unfortunately, these families are frequently not aware of the simple approach of DNA banking, or the future difficulty of assessing inherited risk without genetic test results on their affected relative. DNA banking allows for a simple and immediate solution so that families can focus their attention on their loved-one, rather than the more involved process that typically accompanies genetic testing.

In summary, DNA banking is appropriate when:

• Current technology has failed to find a genetic cause for what appears to be an inherited disease in a family, or
• Genetic testing is not feasible or available to an affected individual, but may be available in the future.

Further information on DNA banking, including contact information for genetics professionals, is contained in the downloadable brochure below.

DNA Banking Brochure (PDF)