Frequently Asked Questions text (link “FAQ’s”)
FREQUENTLY ASKED QUESTIONS ABOUT DONATION
1.
WHAT IS THE PURPOSE OF A BRAIN DONATION? Brain donation is a valuable
gift. One brain provides a basis for studies by numerous researchers throughout the United
States as well as other countries. Although we have improved clinical research methods that
can be performed on living brains, such as genetic studies and imaging techniques,
postmortem tissue best illuminates the biochemistry and pathology of the MS-affected brain.
2.
WHO CAN DONATE? Any legally competent adult can donate their brain to be used for
research after their death, just as they can donate any other organ. Those who may be
incompetent, or otherwise unable to sign, may provisionally donate through their guardian.
However, it is the responsibility of the next-of-kin or guardian to authorize tissue to be
removed for research at the time of death.
3. WHO CANNOT DONATE? We need to know at the time of death if the donor used a
respirator to aid in breathing. Eligibility will be decided on a case-by-case basis. We regret
that organ donors for transplant cannot donate brain tissue to the program because of the use
of respirators for such donations. We also cannot accept donations from patients with highly
contagious or transmissible diseases (such as, but not limited to, tuberculosis, hepatitis, or
Jacob-Creutzfeldt disease). Please let us know at the time of death if the donor was
diagnosed with such a disease. Finally, most medical schools, including UIC, do not accept
body donations from persons who have donated this type of tissue. Donors planning a
medical school donation who are also interested in brain and spinal cord donation should
check with the desired medical school for their policy.
4. WHAT HAPPENS AT THE TIME OF DEATH?
A) At the time of death, the next of kin or a member of the donor’s medical care team
should call the Coordinator or Director. During office hours these numbers are (312)
996-5763 and (312) 996-5754, respectively. After hours call the 24-hour pager at
(312) 996-2242 and page 2947.
B) The next-of-kin MUST give consent by phone BEFORE any tissue may be removed,
even if the donor is registered in our program. It is important to collect tissue as
quickly as possible (usually within 12 hours after death) and before any funeral
preparation. The next-of-kin must be immediately reachable at the time of death to
give this permission.
C) We will arrange for the donor’s body to be transported to UIC Hospital for the
donation procedure at no cost to the donor or family.
D) After the tissue is removed, the body is released to the family for the arranged funeral
services. The family is responsible for transport to a funeral home.
5. MUST THE DONOR BE TRANSPORTED TO OUR FACILITY? Yes. All procedures
are performed at UIC Hospital to ensure that the protocol is carefully followed. We will
provide transportation for the donor’s body to UIC Hospital at no charge, but we do not cover
any funeral or burial transportation expenses.
6. WILL FUNERAL PLANS HAVE TO CHANGE? After the brain has been removed, the
donor’s body is released to the funeral director or family according to the arrangements
made. An open casket or other traditional funeral arrangement remains possible. The exact
funeral and burial details, however, remain the responsibility of the donor’s survivors or
estate, and no funeral plans (e.g. cremation) can be arranged or carried out by UIC or the
repository.
7. IS THERE ANY COST? The repository pays for the tissue removal and transportation of
the donor’s body to UIC Hospital. Transportation to a funeral home as well as funeral
arrangements and expenses remain the responsibility of the donor and family. Plans must be
made with a funeral home and cannot be arranged or carried out by UIC or the repository (for
example, we cannot arrange to have the donor’s body cremated at UIC).
8. WHO IS NEXT-OF-KIN? The hierarchy of legal relationships is fairly consistent from
state to state, but should be confirmed in the donor’s state of residence. The surviving legal
next-of-kin, according to the Illinois Anatomical Gift Act, is the first to fulfill one of the
following requirements:
(1)
(2)
(3)
(4)
(5)
(6)
(7)
(8)
(9)
(10)
Legal agent under power of attorney for health care;
Surrogate decision maker identified under the Health Care Surrogate Act;
Legal guardian;
Spouse (unless divorced or legally separated);
Adult child (if more than one, all must agree);
Parent;
Sibling (if more than one, all must agree);
Adult grandchild;
Close friend;
Executor or administrator (if already appointed)
9. ARE MEDICAL RECORDS OR OTHER CONSENTS NEEDED? The Coordinator will
contact the next-of-kin after the donor’s death. In addition to the next-of-kin’s telephone
consent to remove tissue for research at the time of death, we are required to obtain and keep
on file an original signed informed consent. At this time, we will also send an authorization
for release of the donor’s medical records. This helps us maintain comprehensive
information for later correlation with research studies conducted by scientists. The next-ofkin should sign and return these forms to us. As with all information, these records will be
kept strictly confidential.
10. HOW DO I BECOME A DONOR? Let us know of your wish to donate by
COMPLETING AND RETURNING THE DONOR FORMS. Please review the forms with
your family and physicians, as they will share responsibility for your wishes. Remember that
your next-of-kin must give consent by phone at the time of death. Discussing your decision
with your family and doctors helps avoid confusion about your desire to donate and makes
sure that your endowment for the future is carried out as you have planned.