Research on Human Subjects -thymus theft

What a 1979 Bioethics book said about thymectomy during heart surgery

You might have read the story about my son suffering after his thymus organ was taken from him when he was a newborn. What did bioethics books historically say about taking thymus organs from babies and children during heart surgery?

Below is a direct quote from the 1979 bioethics book 'Research on Human Subjects' (pages 38-40). This highlights that scientists and doctors knew thymectomy during heart surgery was:

* Not necessary

* A "high risk" procedure

* Could lead to death from infection after surgery or future immunodeficiency 

The book declares "It’s unreasonable to use patients as guinea pigs!"

Direct quote:

"This research proposal was intended as one with a potentially high payoff in terms of scientific knowledge but with very severe risks to the human subjects who might be involved. It involved thymectomizing a portion of a group of children and adolescents who were to undergo surgery to correct heart lesions anyway in order to see if thymectomy would increase the probability of tissue transplant survival. Each child or adolescent in the group would receive a small skin graft after the operation and the survival of these graphs was to be compared between thymectomized and non thymectomized groups. The relationship between the thymus and immunological capability in children was outlined briefly in the proposal.

This particular research protocol however involves a high degree of risk for those children and adolescents who would be thymectomized and no possible therapeutic benefit to them in return in addition to the small added surgical risk of thymectomy during an already serious surgical procedure. There is the possibility of destruction of the immune response not only to the tissue transplants but to various diseases to which humans have become hereditarily immune. This protocol is a rare example of a high risk procedure coupled with no accompanying therapeutic compensation of any kind to the subject.

This study can in no way benefit this patient and therefore whatever risk is not justified. No therapeutic benefit for the subjects involved, who also might suffer immunological deficiencies in the future. The patient selected will undergo major surgery, risk of infection, possible bacterial endocarditis, and it's not ethical to expose them to any added risk. It is unreasonable to use patients as Guinea pigs!

Patients would not benefit therapeutically. Long term effects of thymectomy in children are unknown and could be quite deleterious. I hope that these types of experiments are not being conducted anywhere."

In 1987 (over a decade before my son was born) they wrote a review of the literature stating “Children who have had a thymectomy early in life represent an important group in the study of the development of the immune system in man. Although the clinical consequences of early thymectomy are unclear, Evidence of impairment of parameters of immunity have been found in later infancy and routine thymectomy in paediatric cardiac surgery should be avoided.”

But they never stopped.

They never told the parents what was done to their child. They continued to study them as they suffer.

Picture of my son Daniel above - 6.5 pounds wearing a preemie diaper - after VSD repair open heart surgery at UCLA. Next to him is the cover of one of my favorite Thymus books, circa 1990

This is just one of many medical books written before my son was born discussing the thymus’ importance in humans throughout their lives:

https://www.google.com/books/edition/Immunoregulatory_Role_of_Thymus/Ubln9u_BcGUC?hl=en&gbpv=0

The Bioethics book:
Research on Human Subjects: Problems of Social Control in Medical Experimentation
by Bernard Barber (Author), John J. Lally (Author), Julia Loughlin Makarushka (Author), & 1 more

Publisher ‏ : ‎ Routledge (January 30, 1979)
ISBN-10 ‏ : ‎ 0878556494
ISBN-13 ‏ : ‎ 978-0878556496