I have heard first-hand of several instances where a parent lost a child, and in the aftermath of their all-consuming grief, gave a substantial donation in the name of the child to the treating scientific institution. The donation was given to further research into the disease area that the late child was suffering from.
I am always surprised that any organization would accept donations under these circumstances. Often the donations are given by distraught parents. They are still processing their loss. One would think that an organization or institution would have rules and regulations that would prohibit the taking of money under these circumstances, because of conflict-of-interest. However, these organizations are usually only too happy to take these donations.
The parents invariably ask that the money is used to further research in the late child’s disease. When a child has died from any disease, but especially a rare disease, there has been a failure to prevent the death of the child, often because current treatments were inadequate. The parents are still going through a range of emotions. They may well go through those emotions for the rest of their lives. To accept money from them immediately after the death of their child is unethical, in my view.
When parents have given donations after the death of a child, the parent should be able to receive regular reports of how the money was spent, and what results were achieved with their money. If results cannot be substantiated, the parents should be able to request a full refund of their donation.
It is high time that compliance officers began to create rules for these types of situations. Certainly, the parents should have the right to take back their money at any time that they realize that they were not in sufficient possession of their emotions to make these types of decisions.
What are your thoughts? We want to hear from you.
Lorna Speid, Ph.D.
Founder and Chair of the Board
Putting Rare Diseases Patients First!(R)