Justina Pelletier's Law Would Stop Govt Funding of Dangerous Medical Research on Foster Children

06/30/2014 09:30

by Liberty Counsel 

 

Liberty Counsel Action is proud to support Justina's Law, a bipartisan bill that prohibits federal tax dollars to be used for medical experimentation on a ward of the State.

 

Rep. Michele Bachmann (R-MN) joined with Reps. Karen Bass (D-CA), Tom Marino (R-PA), and Jim McDermott (D-WA), to introduce Justina's Law in a response to the case of Justina Pelletier.  [See one of the few URLs for this bill that work, at: http://cdn.freedomoutpost.com/wp-content/uploads/2014/06/JustinasLaw.pdf].

 

In February of 2013, acting on the advice of her physician, Lou and Linda Pelletier took their daughter, Justina, to the ER at Boston Children's Hospital to see Dr. Flores, a gastroenterologist who had been treating Justina [[for mitochondrial disease -- DNI]before transferring to BCH approximately one month prior.

Dr. Jurriaan Peters, a BCH resident who was only seven months out of medical school, saw Justina and decided he would change her diagnosis from Mitochondrial disease to Somatoform Disorder. He did not contact any of Justina's previous expert physicians who had treated her for years and refused to allow Dr. Flores (the doctor she came to see) to see her or examine her issues.


BCH psychologist Dr. Simona Bujoreanu confirmed the Somatoform diagnosis after only 25 minutes with Justina, likewise without contacting other physicians. Dr. Bujoreanu is researching Somatoform Disorder under an NIH grant. Read the complete timeline.


BCH and many other hospitals have policies in place that permit a ward of the state to be used in medical research that presents a greater than minimal risk, even if there is no prospect of any direct benefit to the child.


Justina became a ward of the state and was placed in a psych ward.  Justina remained imprisoned by the state for 16 months. In the last year, during Justina's struggle, the Boston Globe has uncovered at least five other instances of families having their children taken by BCH under the same or similar circumstances as the Pelletiers.


Whether it is one child or thousands, it is our duty to guarantee that children are kept safe from harm while in the custody of their respective states, said Rep. Michele Bachmann. Sixteen months ago, Justina was a figure skater. Today, she cannot stand, sit, or walk on her own. It is unconscionable what happened to Justina, and we must do all we can to prevent it from ever happening again. Removing federal funding from such experimentation is an important first step, Bachman concluded.


Mark Trammell, Director of Public Policy, Liberty Counsel Action, said, "The purpose of Justina'˜s Law is to protect children, plain and simple. As evidenced by the bil's bipartisan support, it is not about partisan politics; it is about advocating for the health and safety of children." Trammell continued, "It is irresponsible and inexcusable to subject foster children, or any child who is a ward of the state, to medical research that presents a greater than minimal risk of harm to the child with no prospect of direct benefit. These are children, made in the image of God; they deserve to be treated that way, not like human lab rats."

 

[Note:  The looming question is, were the doctors at Boston Children's Hospital using their NIH research grants to do research (involving a form of mitochondrial disease?) using Justina as a subject of research?  Is that why no one wanted her release or the records documenting anything that might have taken place over those 16+ months? Why is BCH, as well as other hospitals, even allowed to have such hospital research 'polices' in place when they violate long-existing federal laws and regulations???  Just asking.  Congressional hearings would be fascinating.

 

As sent out before concerning other recent findings of the use of incompetent vulnerable populations of human subjects in unethical and illegal research experiments and clinical trials, one does wonder if our federal regulations are any longer viable at all?  As the following documentation attests, almost all of the research subjects so violated are incapable of giving ethically and legally valid 'informed consent' (they must be capable of understanding all the relevant information about the research, and their will to autonomously consent to participate must not be compromised by incompetence and/or subversive circumstances.  Even more worrisome is the current push even by our own federal officials to completely do away with 'informed consent' if the research is "for the greater good of society".  And that principle is already embedded in the bioethics principles of "beneficence" and justice (so oddly defined) -- even though those bioethics principles contradict the bioethics principle of autonomy!  See, e.g.,:  Medical Research Stakeholders Seek to Overturn Informed Consent Protection--Babies in CrossHairs:  

Part 1:   http://www.ahrp.org/cms/content/view/925/9/  

Part 2:   http://www.ahrp.org/cms/content/view/927/9/  

Part 3:   http://www.ahrp.org/cms/content/view/928/9/ 

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[Proposed Justina's Law on Rep. Bachmann's House website;  see wording of the bill that follows at a different URL -- DNI]

http://bachmann.house.gov/press-release/reps-bachmann-bass-marino-and-mcdermott-introduce-%E2%80%9Cjustina%E2%80%99s-law%E2%80%9D

 

Bachmann, House.gov

June 27, 2014

 

Reps. Bachmann, Bass, Marino, and McDermott Introduce “Justina’s Law”

 

 

Washington, D.C. -- Rep. Michele Bachmann (R-MN) joined with Reps. Karen Bass (D-CA), Tom Marino (R-PA), and Jim McDermott (D-WA), the co-chairs of the Foster Youth Caucus, to introduce bipartisan legislation that prohibits federal funding for medical experimentation on a ward of the State.

The bill, H.R. 4989, nicknamed “Justina’s Law”, is a response to the recent case of 16-year-old Justina Pelletier, who was finally released from Boston Children’s Hospital (BCH) back to the care of her family after a 16-month custody battle between the Commonwealth of Massachusetts and Justina’s parents.

BCH and many other hospitals have an internal policy that allows for children who are deemed “wards of the State”, including foster children, to receive treatment or be involved in research that presents great risk even if there is no prospect of any benefit to the child.

“Whether it is one child or thousands, it is our duty to guarantee that children are kept safe from harm while in the custody of their respective states. Not all these children have families like the Pelletiers willing or able to advocate on their behalf. Sixteen months ago, Justina was a figure skater. Today, she cannot stand, sit, or walk on her own. It is unconscionable what happened to Justina, and we must do all we can to prevent it from ever happening again. Removing federal funding from such experimentation is an important first step.” â€“ Rep. Michele Bachmann (MN-06)

"Children need to be loved and cared for, not treated as something to be experimented on. Foster children are particularly vulnerable because they may not have parents to advocate for them. This bill will make it clear that children are blessings, not guinea pigs." â€“ Rep. Karen Bass (CA-37)

“The bonds between children and parents is sacred. The closeness and level of intimate understanding between them transcends our societal constructs. In Justina's case, she was kept from her loved ones and essentially detained by the hospital and the state. She was lucky to have parents that fought for her and leveraged the support of the media and public officials. Yet too many children do not have parents to speak for them and look out for their health and best interests during times of physical and emotional vulnerability. That fact saddens me. It would sadden any person who knows the power of love and affection. That is why I am proud to support Reps. Bachmann, Bass, and McDermott on this legislation because no child, with parents or not, should be subject to medical experimentation under the legal designation as ward of the state."- Rep. Tom Marino (PA-10)

"The strength and bravery that Justina Pelletier and her family have shown in the face of incredible hardship is a guide star for us all. We must act to protect and cherish children in the care of a state and make sure that they are not the subject of risky medical experimentation. I look forward to working with Reps Bachman, Bass, Marino and countless other colleagues from both sides of the aisle to pass Justina's law as quickly as possible.“ - Rep. Jim McDermott (WA-07)

Click here to view the full text of H.R. 4989[[Note:  Not only this URL but almost all those provided in various articles for H.R. 4989 do not work.  Here is one that does work:]

 

................................................................................

JUSTINA'S LAW [HR 4989]

 

F:\M13\BACHMA\BACHMA_045.XML

 

(Original Signature of Member)

 

113TH  CONGRESS

2ND  SESSION H. R. ------

 

To prohibit Federal funding of any treatment or research in which a ward of the State is subjected to greater than minimal risk to the individual's health with no or minimal prospect of direct benefit.  The context of the law may be viewd on Rep. Michelle Bachmann's site, HERE.

 


[Wording of Justina's Law:  Note that it would allow the use of these children in research with "minimal risk" -- and of course, that depends on how one defines "minimal risk".  http://cdn.freedomoutpost.com/wp-content/uploads/2014/06/JustinasLaw.pdf  -- The article first appeared here. - DNI]