Transparency Crucial for Accountability

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New York City’s
Administration for Children’s Services has announced an “independent
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 4 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?

is the key to dissolving criticism, but transparency is precisely
what has been lacking. Perhaps because disclosure is a slippery
slope into accountability.

On Feb. 29,
2004, The New York Post ran an expos entitled “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 my column, “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
    , including from 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 Alliance for Human Research
(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 complaint
accused the ACS of violating federal regulations.

The specific
federal regulations
that ACS was accused of violating? 45 CFR
46.409 and 21
CFR 50.56
, intended to protect wards of the state from medical
experiment involving “greater than minimal risk.”

The AHRP 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 documentary titled “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
. 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 6,
B. Mattingly
was appointed as Commissioner of NYC-ACS. It is
Mattingly who announced that the 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 the 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

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.

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 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 control 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.

28, 2005

McElroy [send her mail]
is the editor of
and a research fellow for The
Independent Institute
in Oakland, Calif. She is the author and
editor of many books and articles, including the new book, Liberty
for Women: Freedom and Feminism in the 21st Century

(Ivan R. Dee/Independent Institute, 2002).

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