By Jared Chausow
By Katie Toth
By Elizabeth Flock
By Albert Samaha
By Anna Merlan
By Jon Campbell
By Jon Campbell
By Albert Samaha
Eyes on the Prize
The very first piece in Mark Schoofs's Pulitzer Prize-winning series, "AIDS: The Agony of Africa," brought me to tears on my train ride home from work. Although I was aware of the impact of AIDS in black America, I never contemplated how Africans fared without the financial resources we have gathered to address the epidemic.
I share Schoofs's wish that his much deserved Pulitzer will put "more pressure on America to do its part to combat AIDS in Africa," and remind the government that it has not been vanquished in the U.S.
Congratulations, Mark Schoofs! You deserve the Pulitzer Prize. I spent time in Zambia last summer with six teenagers who are in foster care. We brought clothing, toys, books, and medicine for orphaned street children. Your series provided a powerful context for my experience.
Suzanne M. Murphy
We Are the World
Mark Schoofs's "Fossils in the Blood" [April 11], about the San people of South Africa, is such an important article to humankind. I am responding because this subject is part of my thesis work in Fine Arts at William Paterson University in Wayne, New Jersey.
Being categorized as a white female has left me wondering who "my people" really are. I am Italian, German, Irish, and French that I know of (and who knows what that really means, since all of these countries were taken over by many other groups, including Arabs from Africa).
Many people refuse to understand that we all originally come from the same place and have been spread across the world. I long to reconnect to my origins, and am doing so by studying and re-creating ancient art found in Europe and Africa, with my focus being the San people. My heart and soul go out to them as well as all indigenous people who have had their lives, land, and culture ripped out from under their feet.
In Haider Rizvi's article entitled "An Unscientific Method? Activists and Legislators Urge Safeguards for Human Subjects in Experiments" [April 11], I am quoted as follows: "This is not only unethical, but illegal as well. . . . They [the federal Office of Protection From Research Risks] didn't ask why the Department of Probation was allowed to give the children's names to strangers." I did not say the experiments were "illegal," nor did I say that the OPRR didn't ask about a particular matter. I have no idea what the OPRR asked. I did tell your reporter that I believe the study was unethical and the OPRR review was inadequate, but for reasons he did not report.
For example, in its findings the OPRR makes no comment about the overwhelmingly minority nature of the subject population. There is a federal regulatory requirement that "selection of subjects is equitable. . . . " But how can this requirement be met?
According to the federal rules, studies with the types of risks this one posed are not to be conducted unless the intervention is "likely to yield generalizable knowledge about the subjects' disorder or condition that is of vital importance for the understanding or amelioration of that disorder or condition. . . . "
Since the children who were the research subjects did not have any "disorder or condition" (unless one defines those terms as including being an impoverished African American child with an older brother who has gotten in trouble with the law), the study could not render information about any condition or disorder. And it is far from clear what knowledge "of vital importance" the study could provide under the best of circumstances. Again, the OPRR is simply silent about this apparent violation of the federal rules.
Dr. Leonard H. Glantz
Professor of Health Law
Boston University School of Public Health
Haider Rizvi's article "An Unscientific Method?" misrepresented Disability Advocates' statements regarding the fenfluramine experiment that was conducted by the New York State Psychiatric Institute. We challenged the experiment on legal and ethical grounds, but we never described the research or the researchers as "racist."
I provided your reporter with all of Disability Advocates' letters demanding an investigation, and none of the letters described the experiments as "racist." Moreover, I specifically told Mr. Rizvi that I would not characterize the experiments as "racist." Therefore, I was dismayed to read that "describing the experiments as 'unethical' and 'racist,' a coalition of activists, led by Disability Advocates . . . demanded an investigation by federal authorities. . . . "
Executive Director, Disability Advocates
Albany, New York
Haider Rizvi replies: Unfortunately, reading the paragraph in the article that Mr. Zucker quotes, one might wrongly infer that Disability Advocates described the New York Psychiatric Institute's experiments as "racist." However, the word "racist" was used by other activists who have been involved in the campaign to stop such experiments. According to my notes of a telephone interview with Dr. Glantz, he referred to the institute's experiments as "unethical" and "illegal." He also rightly questioned whether the OPRR addressed the issue of why the state department of probation released information about the children to strangers, noting that the issue is not dealt with in the OPRR's findings.