Privacy Issues in UCB Banking

Recently, some readers have been writing that they find the medical questionnaires requested by private banks to be intrusive ...

They feel that privately banked cord blood is essentially their property, and they should not have to answer questions about it until/unless they need to use it. There are underlying concerns about how this information will be used, in an era when supermarket check-out registers are automatically compiling our shopping habits for sale as market research, and when biotechnology makes it possible to discriminate on the basis of genomic information.

Private cord blood banking is an outgrowth of the practices in public cord blood registries. The initial inclination of private banks is to follow the same procedures used by public registries. For health reasons, the eligibility guidelines for mothers donating umbilical cord blood require a maternal blood test for blood-borne diseases and a family medical history.

From a medical perspective, it is essential to know if the mother carried a blood-borne disease at the time of delivery . It can determine whether the cord blood is safe for use. There is no point in refusing this test and banking cord blood that is not usable.

Another important point: If there is ever a case of need in the family, the person who will decide if the banked cord blood is acceptable will be a heamatologist, not a family member. Physicians are more comfortable with specimens that have been subjected to their standard operating procedures.

The standards for privacy of individually identifiable health information are covered by an area of law called HIPAA regulations, which stands for The Health Insurance Portability & Accountability Act of 1996 (August 21), Public Law 104-191, which amends the Internal Revenue Service Code of 1986. Also known as the Kennedy-Kassebaum Act.

The HIPAA regulations apply to all healthcare organizations, and to all individually identifiable health information, regardless of whether the information is or has been in electronic form.

HIPAA compliance is mandatory after April 14, 2003.

In summary, the new regulations reflect these five basic principles:

• Consumer Control: The regulation provides consumers with critical new rights to control the release of their medical information.
• Boundaries: With few exceptions, an individual's health care information should be used for health purposes only, including treatment and payment.
• Accountability: Under HIPAA, for the first time, there will be specific federal penalties if a patient's right to privacy is violated.
• Public Responsibility: The new standards reflect the need to balance privacy protections with the public responsibility to support such national priorities as protecting public health, conducting medical research, improving the quality of care, and fighting health care fraud and abuse.
• Security: It is the responsibility of organizations that are entrusted with health information to protect it against deliberate or inadvertent misuse or disclosure.