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 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

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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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