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    April 6, 2011

    Did learning about Henrietta Lacks’s story change the way you see race and medical ethics in the U.S.?

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    8 Responses to “Did learning about Henrietta Lacks’s story change the way you see race and medical ethics in the U.S.?”

    1. Sally Laird says:

      This book is the most powerful and profound I have read in my 58 years of avid reading. I was one of those children who stood in lines in public schools all over America, one line getting the Salk Vaccine and the other getting a placebo. My childhood closest friend’s father had polio and I remember him in an iron lung and then confined to a bed for months. He died at age 76 of his bodies inability to overcome the damages of the polio so long ago. But no one, in this country anyway gets polio any more. And now we know about the young mother, Henrietta Lacks, who, as I think her daughter Deborah would say, was so full of the love of life, that even her death couldn’t stop her and her cells saved uncountable lives and made it possible for historical breakthroughs in the understanding of cell structure and behavior.
      BUT THE FAMILY CANNOT AFFORD LIFE INSURANCE! I AM ABSOLUTELY HORRIFIED. It has been known now for at least 10 years about the Lack’s family and I am floored that no one: not an insurance company, not one scientist, not the book publishers, or any of the professional organizations, not even this web site, has arranged for and paid for health insurance for this family. I was hoping to find a way to talk to the author or publisher; but so far have only found this “conversation.” I join my voice to all of you and I hope we can find a way to make this happen.

    2. Tammy Lacks Moore says:

      I am enjoying this book so much!!! I already knew racism was a big issue back then, but it makes me sick to my stomach the way they were treated.
      My interest in this book is because I know from my childhood, I heard stories being talked about; stories about the black Lacks’ and the white Lacks’ mixing. I have always told people that I’m bi-racial. I’m just too white for most people to believe me. But I’m at the point in the book where Rebecca is naming names….and I KNOW these people. So I think the book is going to help me piece together some things that the other people in the family don’t want to talk about!!
      I’m loving this book!!

    3. Yes I loved that book. It was fascinating. I have been very concerned about racial matters all my life even though I am caucasian but now we are the parents of African American twins who we have had for 10 years now. Even though I grew up in the 1950’s here in the midwest, I was not raised to be prejudiced at all. My parents were intelligent, educated people and I am glad of that.

    4. Dee says:

      My child has autism and I’m been forced to sign and read the HIPPA document at least 20 times over the years. I thought it was an inconvenience, but now I see it as important first step in this very confusing area of medical ethics. I’m so glad I read this book – I’ve learned so much about scientific research along with caring greatly about Deborah and her family. I’m concerned about all the ethical questions the book has raised, but haven’t yet deciced where I stand on these complicated bioethical issues.

    5. Nurten Erbey says:

      I haven’t finished the book yet but I am so captivated by the reality behind the medical researches I could’t resist writing this little note. I am strongly against racism. I was shocked to learn about the Tuskegee study!

      I would like to congratulate the author for writing this book and enlightening people who live in other countries, like me. I live in Turkey and by reading this book my awareness of the racist approach in science has increased.

    6. Keith says:

      I was definitely enlightened to the evolution of human tissue collection practices and the interwoven roles of race, legalities, medicine and the unbelievable role of one family’s role in the development of medical development of the last half of the twentieth century, eventhough it was completely at their own expense and with almost no recognition outside of segments of the medical community until this book, that is. After reading this and starting to digest it, I am completely convinced the issue of tissue ownership should, and probably will be, one of the most monumental movements in the coming decades. Thank you, Rebecca, for your tireless efforts to bring this to the attention of the rest of the world! I’m a die hard fan from here out and will be following this as it evolves and become as involved as I can.

    7. It did. it revealed to me the interwoven realities in which Black women’s bodies have been regulated through the biomedical system; the ways in which medical ethics must be responsive to these lived experiences — not only Henrietta Lacks, but the Lacks family members, and generations of Black women and their families who have suffered too long under a broken system that has at best been threatened by institutional racism and provider bias and at its worst, treated them as incapable of making their own health choices or even believed that they did not feel pain. It also has been written alongside the tradition of Black women’s scholarship and truth-telling about medical atrocity and injustice — namely, Harriet Washington’s Medical Apartheid and Dorothy Roberts’s Killing the Black Body: Race, Reproduction and Liberty.

    8. EJ says:

      Absolutely. I was unaware that tissue samples were kept, and used at the discretion of the medical research community. In my case, my outrage is more about the covert nature of requesting permission: should the desire to harvest and use my tissue be clearly stated, and with hope could make a difference in even one person’s life, I would give permission. But it galls me that clarity is not provided; it shows a colossal lack of respect.

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