There is no doubt among the medical community that cervical cancer is a ruthless killer of women, and that without research to help medical communities better discover and address the risks involved, it will continue to remain a threat to women’s health. Yet those studies must be conducted in a way that is moral, humane and honest, and that simply has not been happening in some cases.
At the center of a controversy over unethical medical testing is an ongoing, 15 year study, funded by the U.S. in which hundreds of thousands of low or moderate income Indian women have been put into groups to test different screening methods and schedules when it comes to checking for HPV, the virus that causes most forms of cervical cancer. Of the over 300,000 women participating, almost 140,000 received absolutely no screenings at all, in order to have them serve as a “control group” for the rest of the participants.
To 254 of those women, what they proved is that with no screenings, they will die of an easily detectable cancer.
“[P]eople should not be used to demonstrate exactly how much death results from lack of medical care,” said Dr. Eric Suba, a San Francisco-based pathologist who is advocating on behalf of the women who have died as a result of the study. Dr. Suba notes that as the standard for screening for HPV has already been set, by denying allowing any screening of the control group, the study acted unethically by going below the established norm for minimal care in order to create a new floor, and one that endangered women’s lives unnecessarily.
The use of marginalized communities to test out medical theories or conduct studies has been a long standing tradition in modern medicine. As Dorthy Roberts chronologizes in her book “Killing the Black Body,” women of color have been used as test subjects for modern gynecological advances since the days of legal slavery. Even in more modern times, they have been forced into sterilization or contraceptive coercion, with medical practitioners refusing them adequate informed consent or even disclosure about their participation in trials.
India’s role in the medical exploitation, especially when it comes to reproductive issues, is just as problematic. The country has long been a destination for unregulated fertility and surrogacy experiments, including numerous attempts at IVF for women far past the age of child bearing, even into their 60′s and 70′s. Gestational surrogacy of children for American couples has become a cottage industry with Indian women of low economic status bearing the physical risks and effects of carrying children. Because the industry is so unregulated and the economic disparities so great, “medical tourism” especially when it comes to reproductive health, can run rampant, with much cheaper IVF costs and a potential for exploitation of those willing to donate eggs or act as surrogates in order to reap an often minimal financial payment for the service.
The ethical standards surrounding clinical trials are simple and straightforward, and placing patients in unneeded medical risk in order to conduct an experiment is not a part of the process. According to ethical standards, it includes weighing the risks versus the results, and doing everything possible to ensure patient safety throughout the experiment. In this case, the study failed. The U.S. has done it before, in the Tuskegee syphilis experiment, refusing to give adequate treatment to those who participated even after a minimum standard of care had been established, and keeping them uniformed about even what the purpose of the study was or their own medical conditions.
We know better. Science can be done, and medical advances can be made, but not at the expense of hundreds of unnecessary and completely preventable deaths.
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