What Were They Thinking

There’s no doubt that ethics are collapsing in our country. Policies and laws based on accepted ethics of the past are either openly flouted, or used as a smokescreen to mask actions that are anything but ethical. Every week Americans find themselves staring at ugly situations in the news, especially the growing scandals around pharmaceutical drug testing and safety, and asking, “What were they thinking?” Notable example: the AIDS-drug experiments on foster children at the Incarnation Children’s Center in New York, which is going into a new round of revelations as I write this.

What is ethics and why should we care about it?

The word goes back to the Greek ethos, meaning “moral character.” By extension it means “custom,” the collective morals of a people as agreed on and lived by them. Some civilizations’ rules seem bizarre or nonsensical to us—yet these systems were the glue that held an ancient people together. Ethics called on individuals to be responsible for each other, and accountable to each other. In the West’s medical tradition, which began with the Greeks, ethos was summed up in the Hippocratic oath, “Do no harm.” No doubt this oath was born when leading physicians looked at some treatment done irresponsibly, or some doctor’s infamous greed, and cried out, “What were you thinking?”

When Christianity came along, it evolved its own “morality” (it didn’t like the pagan word “ethics”). Christian ethics could be shaded greatly. Catholic inquisitors who had dissenters burned at the stake believed they were acting ethically. Protestants who aimed to reform Catholic corruption disagreed—yet Protestants were willing to burn each other at the stake, too. In short, the history of Christianity shows us how authority can skew “ethics” to serve its own purpose. Yet sensibilities about “right and wrong” remained powerful even in post-Reformation philosophers who returned to old ideals of the ancient Greeks. Men and women with this liberated philosophy were among the colonists of North America, along with colonists whose ethics were more churchy.

Today the religious right call it “morals,” while liberals prefer the older word “ethics.” Whatever you call it, things have clearly gone horribly wrong and scandal is overwhelming our country.

Several years ago ethics controversy in medical research sparked the founding of a new watchdog organization. The Alliance for Human Research Protection (AHRP) was inspired by a mother’s experience—Vera Hassner Sharav watched her son die from a side effect of pharmaceutical drugs, one that she says she wasn’t told about. Headquartered in New York City and run by prominent professionals and lay activists, the AHRP fights for children’s rights in biomedical experiments, and for real informed consent from adults. The range of issues is shockingly wide, from the danger of anthrax vaccines to pesticide experiments on humans.

The ICC scandal was first aired in spring 2004 by independent journalist Liam Scheff, and given high priority by AHRP. After ignoring the story for some time, government agencies finally started looking into whether guidelines for including foster children in clinical trials were violated. Predictably, the barking dogs of the AIDS establishment have rushed out to howl in defense of ICC’s drug trials. Liam Scheff and Vera Sharav are being painted as bad guys who are attacking good-guy policies—ones that supposedly save children’s lives by providing AIDS drugs that they wouldn’t get otherwise.

But as I write this, Scheff published a new round of allegations in the New York Press. He has new interviews with caregivers and older children patients from ICC. They vividly describe forced treatments with AZT and other drugs, including the extreme coercion used on children if they refused to take meds that made them sick. Interviewees named names in allegations of treatment-related deaths. About the same time, the Los Angeles Times published a report on widespread ethics violations at the National Institutes of Health itself, the agency that holds final authority over pediatric AIDS trials.

Today, as in ancient Greece, it’s shockers like this that inspire a people to demand real ethics. If Scheff’s allegations are verified by a criminal investigation, we’ll have to wonder about the doctors, staff, pharma executives, government officials, and others who looked at this ICC scene unmoved and let it continue for years. We’ll have to ask, “What were they thinking?”

What Were They Thinking?