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ONE YEAR ANNIVERSARY

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It’s been a year since your book Lethal Decisions. The Unnecessary Deaths of Women and Children from HIV/AIDS was published. I am wondering what kind of response you have received. I have experienced two different emotions after reading the book. Clearly the first part is about the amazing contributions of science to discovering a new disease, finding a way to diagnose it, and then developing treatment that could treat the viral infection and prevent new infections. I know that in your book you emphasized the significance of the 1994 discovery that treating HIV-infected pregnant women reduced infection of their infants by 60%. But newer studies are equally dramatic showing that individuals who are HIV-infected are less likely to transmit the virus to a sexual partner if they are on treatment that reduces the viral load. Additionally, if the drug is taken regularly by an uninfected sexual partner, HIV infection can be prevented. The second part of your book was discouraging―you documented how academic and bureaucratic institutions actually contributed to the delayed implementation of treatment and prevention discoveries in poor countries. Have individuals in these disciplines challenged you?.  What are you hearing back?

By Benjamin Rush

Benjamin Rush was a Founding Father of the United States. Rush was a civic leader in Philadelphia, where he was a physician, politician, social reformer, educator and humanitarian, as well as the founder of Dickinson College.

Comments

  • Amanda Marie Maxwell 04/10/1980 Monday, 16 July 2018

    What an absolute abomination this has caused for our entire civilization. I unknowingly played a huge role in this depravity and I am disgusted with the outcome. The evil that is within the souls of some men is truly worrisome.

  • Arthur Ammann Thursday, 15 March 2018

    The response to the book has been mixed. Those who have contacted me from the general public understood the major contributions that science can make to discovering and controlling diseases. But they were perplexed as to why many of the same individuals who made the discoveries could ethically rationalize withholding treatment from vulnerable people for the purposes of research. A frequent and related question was, “Why would WHO publish guidelines that recommended withholding treatment until HIV infected individuals developed advanced disease?” When I pointed out the similarity to what happened with the infamous Tuskegee and Guatemala experiments conducted by academics and supported by the US Government, their response was (as is mine)―how could it happen considering all the ethical protections that were put in place to prevent it from happening all over again?

    On the other hand, the academic community, especially those engaged in HIV research, have basically ignored the intent of the book. It was to point out successes and failures and correct the latter. It’s not easy to acknowledge that you might have been involved, or even responsible for withholding treatment. Disappointingly, many of the unethical practices in clinical research that I pointed out in the book have continued. The researchers simply do not believe that their studies could be unethical. This might be attributed to the fact that there is so much money in research. (The US spent $456.1 billion for research and development in science in 2013). As a result it is difficult to identify individuals who do not have some sort of financial interest in continuing clinical research―ethical or unethical. Conflict of interest extends throughout all aspects of clinical research from the planning process to the funding process and through the scientific and ethical approval process. I am not completely discouraged. Looking back at Tuskegee and Guatemala, the declaration that the studies were unethical took time. The studies were denounced as unethical only after the original investigators were deceased. That raises a difficult question for me―how many individuals worldwide will be subjected to unethical clinical research as new research discoveries are made and as the demand of research subjects escalates. How do we protect research subject, especially poor women and children, from exploitation and how can individuals with no conflict of interest, but who understand the risks and benefits of research, become involved in determining what research should be conducted. I am reminded of the words of Ian Malcolm in Jurassic Park, “Your scientists were so preoccupied with whether or not they could, they didn’t stop to think if they should”

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