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Transparency Crucial for Accountability
NYC's Administration for Children’s Services
(ACS) www.nytimes.com/2005/04/23/nyregion/23aids.html
has announced an "independent review” of the
controversial AIDS-drug trials conducted between
1988 and 2001 on children in its foster care. The
highly experimental and toxic drugs were
administered to infants as young as four-months
old. For over a year, medical rights watchdogs and
some media voices have demanded transparency on the
experimental drug trials. Why has it taken so
long?
Transparency is the key to dissolving criticism
but transparency is precisely what has been
lacking. Perhaps because disclosure is a slippery
slope into accountability.
On February 29, 2004, The New York Post
ran an expose entitled www.garynull.com/documents/HEAL/AIDSTots.htm
"AIDS Tots Used as 'Guinea Pigs'". It claimed that
about 50 wards of ACS had been used to test
multiple combinations of AIDS medication. (The
Post later revised that number to 100 in the
light of new data. ACS has now raised the number to
"about 465" children.)
The article ended, "Officials…refused to
talk to The Post."
On March 10, 2004, FOX News ran an editorial
entitled www.zetetics.com/mac/ifeminists/2004/0310.html
"When Mother is a Bureaucracy", in which I
asked:
- How many children were involved?
- What were the results of the trials?
- Were children removed from foster parents
who refused treatment, including from www.talkaboutparenting.com/group/alt.adoption/messages/419683.html
a nurse experienced with treating AIDS in
children?
- Were feeding tubes involuntarily inserted
into the abdomens of children who refused oral
medication?
The FOX editorial ended, "For once, a child
welfare system must have the courage and decency to
open itself to public scrutiny."
At the same time, the www.ahrp.org
Alliance for Human Research Protection (AHRP) --
self-described as "a national network of lay people
and professionals dedicated to advancing
responsible and ethical medical research practices"
-- filed a complaint against ACS with the FDA and
the federal Office of Human Research Protections.
The www.ahrp.org/ahrpspeaks/HIVkids0304.php
complaint accused the ACS of violating federal
regulations.
The specific federal regulations that ACS was
accused of violating? www.unh.edu/osr/compliance/sectionXIV.htm
45 CFR 46.409
and 64.233.167.104/search?q=cache:YU2ZltHQa1sJ:www.fda.gov/ohrms/doc
ets/dailys/01/Jul01/072301/c000006.pdf+%2221+CFR+50.56%22&hl=en
21
CFR 50.56, intended to protect wards of the state
from medical experiment involving "greater than
minimal risk".
The AHRP www.ahrp.org/infomail/04/11/30.php
stated, "Phase I and Phase II experiments involve
the greatest level of risk and discomfort for
children insofar as they test the safety and
toxicity of the drugs as well as maximum dose
tolerance." In short, the risks seem to have been
greater than minimal.
The complaint against ACS ended, "We ask
for…full disclosure of the adverse effects
suffered by these children; disclosure of
institutional and physician conflicts of interest;
and the children's condition following their
participation."
The story received considerable attention from
media abroad. For example, last November, the BBC
aired a news.bbc.co.uk/1/hi/programmes/this_world/4038375.stm
documentary entitled "Guinea Pig Kids: Vulnerable
NYC foster children forced to test AIDS drugs." The
documentary also pointed an accusing finger at the
drug companies, such as GlaxoSmithKline, who
supported some of the tests. (See FOX News
www.foxnews.com/story/0,2933,140829,00.html
editorial, December 7th, entitled " NYC Must Come
Clean on Foster Kids AIDS Scandal")
ACS stonewalling continued. No information about
the children's condition before and after the
experimentation was revealed, which raised
questions about the public value of such 'secret'
testing.
On July 6th, www.nyc.gov/html/acs/html/whatwedo/commissionerbio.html
John B. Mattingly was appointed as Commissioner of
NYC- ACS. It is Mattingly who announced that the
www.vera.org/
Vera Institute of Justice, a New York-based
nonprofit research group, would conduct an
investigation and that a panel of national health
care experts would review its findings.
In doing so, Mattingly defended the
appropriateness of the testing. But, according to
www.nytimes.com/2005/04/23/nyregion/23aids.html
New
York Times, the Commissioner believes an
outside investigation is required to allay the
concerns raised by "some reporters" and by "a
minority advocacy group." Virtually all of the
children in the tests were African-American or
Hispanic.
Mattingly added, "we acknowledge the need for
transparency in all of our dealings with the
public…For us to be effective…we must
have a sense of mutual trust with those families we
seek to serve." After all, ACS is the agency
charged with investigating and preventing child
abuse.
An "exhaustive" internal review, conducted at
Mattingly's request has reportedly exonerated ACS.
For example, the review rejects the accusation that
children not perilously ill were included in the
experimental tests. By contrast, Vera Hassner
Sharav, President of AHSP, claims that documents
filed with the federal government show many of the
foster children were only "presumed" to be HIV
positive. If true, those children would not have
been perilously ill.
Transparency is badly needed. An exonerating
self-investigation appears to be self-serving and
only raises the level of public skepticism.
Moreover, although Mattingly's announcement of
an independent review was meant to calm the issue,
some statements raised further concerns. For
example, according to the www.nypost.com/news/regionalnews/45051.htm
New York Post, "Vera has also been asked to
locate as many of the children as possible to
ascertain their current medical conditions."
Mattingly also indicated that records will be
reviewed to see if there were more children who
participated.
How exhaustive could the ACS internal review
have been if the number of children involved and
the long-time effects on their health are still
unknown?
When an "authority" assumes controls over the
lives of human beings -- effectively stripping them
of a voice -- the absolute minimum demanded of that
authority should be transparency. And, yes, that
does lead to accountability.
©2007, Wendy
McElroy
* * *
Wendy
McElroy is the editor of ifeminists.com
and a research fellow for The Independent Institute
in Oakland, Calif. She is the author and editor of
many books and articles, including her latest book,
Liberty for Women: Freedom and Feminism in the
21st Century. She lives with her husband in
Canada. E-Mail.
Also, see her daily blog at www.zetetics.com/mac
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