I wrote yesterday about Justina Pelletier who has been held at Boston’s Children Hospital since Feb 13,2013 against her families will.
Since I was alerted to this story I have been following it very carefully and doing a lot of research on my own.
Justina is considered a ward of the state.
A ward means any child who has been adjudged dependent by a court and who is under the care or custody of a public official or agency, including foster children, or any child under the control of DSS in the state of Massachusetts. This also applies to children in penal custody or otherwise detained within the criminal justice system.
- Strict limitations on medical discussions with the family
- No discussions of medical test results
- No second opinions
- Eliminate discussion outside “our” hospital
Informed consent is widely regarded as a cornerstone of ethical research. Because children (except for adolescents under certain conditions) do not have the legal capacity to provide informed consent, the concepts of parental permission and child assent have been developed as standards for ethical research involving children.
Parents have a most intimate and profound duty and desire to protect and promote their child’s safety and well-being in research, as in all realms of life. By improving the initial and continuing process for securing parental agreement to a child’s participation in research, investigators, IRBs, research institutions, and others can support parents in fulfilling their responsibilities and, thereby, help them feel that they have done the right thing for their child, whatever their decisions about research participation.
Those last two statements are taken from the National Research Council. The Ethical Conduct of Clinical Research Involving Children . Washington, DC: The National Academies Press, 2004
So in the case of Justina Pelletier, her family refused, the hospital got its way by making her a ward of the state so they could treat her anyway.
Please read Boston Children’s protocol on doing RESEARCH experiments on children who become wards of the state, it is only 2 pages.
This is not the first time making a child a ward of the state has occurred at BCH. Elizabeth Wray arrived at Boston Children’s Hospital in Sept 2012, Wray said doctors at Children’s told the family that Elizabeth’s conditions were psychiatric in nature and not medical and suggested placing her in a psychiatric ward.
The same thing happened to her family that is occurring to Justina Pelletier’s family they too were placed under a gag order. WTH?
After 10 months Elizabeth Wray was released from the hospital and sent home.
Justina has been in captivity for over a year.
I am a mother of five children, one in heaven. I speak to my children every day. I can NOT imagine what this little girl is feeling, isolated and alone. This in and of itself is a tragedy and my heart breaks for Justina. We know physically she is deteriorating, she has gone from ice skating until she got the flu to now in a wheel chair.
It is obvious that children’s hospital has been doing research on children (they refer to them subjects) for many years. I am quite sure they are not the only hospital participating on trials both medically and psychology on children.
They should follow the guidelines noted above in the National Research Council. The Ethical Conduct of Clinical Research Involving Children and get parents permission.
STOP making children wards of the state to get your research!!
- If Boston Children’s Hospital thinks Justina Pelletier was misdiagnosed and removed her from her parents, what about her sister Jessica who also has been diagnosed with the same disorder?
- Why are people with Chronic Lyme disease not covered by their insurance companies?
- Why is the American Psychological Foundation made up of a few people able to come up with new diagnosis all the time like grief? Yes grief after two weeks is now a psychological condition. Give me a break!
- Why are not diseases with physical conditions like PANDA’S (Pediatric Autoimmune Neuro-Psychiatric Disorder Associated with Streptococcus),mitochondria disorder, lyme disease not getting the attention they deserve.
Please sign the petition to investigate the civil rights violation of Justina Pelletier.
Donate to Free Justina via PayPal.
I’ll end with a nice video made my Jennifer Leigh for the family.