the patient. 
2. Choice and cost of alternative therapy should patient decline or not be 
chosen. 
3. Probable inpatient admission for removal of marrow, treatment of cells, 
reinfusion. 
4. Short-term Immediate follow-up as an inpatient. 
5. Long-term (3-5 year minimum) follow-up: define extent, locale, probable 
cost. Inadvisability of withdrawal. 
6. Agreement in advance for the need of a post mortem examination whether 
patient dies during Initial course of treatment or at any time In the future 
(even If of unrelated causes like accidents, etc., or in a distant locale). 
Note that legally the consent can only be given at the time of death. However, 
the family needs to understand from the outset that the precise cause of death 
and the extent of damage to other organs. If any. from the procedure must be 
ascertained as It may be of vital Importance to planning gene therapy for 
future patients. 
7. Need for contact In future If any other disease occurs In patient. 
8. Publicity and public scrutiny (will be addressed further in another 
section) . 
INCONVENIENCES AND DISCOMFORTS 
1. Routine tests 
2. Removal of bone marrow 
3. Infusion of marrow 
4. Extent of follow-up testing - venipuncture, bone marrow sampling, possibly 
other biopsies, possibly more elaborate medical workups for common problems to 
be sure they are unrelated to the study procedure 
5. Post mortem - specific tests in exam regardless of circumstances of death 
Recombinant DNA Research, Volume 12 
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