Now imagine they posted your genetic information online, with your name on it. That report would list the good news (you’ll probably live to be 100) and the not-so-good news (you’ll most likely develop Alzheimer’s, bipolar disorder and maybe alcoholism). Imagine if someone secretly sent samples of your DNA to one of many companies that promise to tell you what your genes say about you. People wanted to know: did scientists get the family’s permission to publish her genetic information? The answer is no. Because I wrote a book about Henrietta Lacks and her family, my in-box exploded when news of the genome broke. Later their medical records were released to the press and published without consent. The family has been through a lot with HeLa: they didn’t learn of the cells until 20 years after Lacks’s death, when scientists began using her children in research without their knowledge. Now they may finally help create laws to protect her family’s privacy - and yours. They were used to help develop our most important vaccines and cancer medications, in vitro fertilization, gene mapping, cloning. She was a black tobacco farmer and mother of five, and though she died in 1951, her cells, code-named HeLa, live on. This clause states that patients must be informed of a doctor’s or lab’s intentions relative to the use of your tissue, blood, or cells.LAST week, scientists sequenced the genome of cells taken without consent from a woman named Henrietta Lacks. After the exploitation of the HeLa cells, research standards and restrictions were instituted, including the “informed consent” clause. Henrietta’s “immortality” led to many achievements in medical research, but it also led to more restrictions of the use of the cells and tissues of patients. While private labs were making millions on her cells, her family remained poverty stricken and without health insurance. Her family didn’t realize how Henrietta’s cells had been used until twenty years after Henrietta’s death.
She never knew that her cells had been taken and that they, in a sense, had made her immortal. Henrietta died a few months after the cells were taken from her. Millions of dollars were made by private companies on the sale of HeLa cells. However, they were so strong and robust that they were suspected of contaminating other cultures. Literally hundreds of thousands of tests were conducted using them. Many medical advancements were made using the HeLa cells. Henrietta Lacks had become immortal through her diseased cancerous cells.
They were distributed to labs all over the world.
Over the years, Henrietta’s cells became known as the HeLa cells. The lab director, George Gey, was amazed just as the world of medical scientific research would be one day. By the next day they had doubled and had consumed all the space that she had allowed for them. She separated the culture into two parts and placed each in a separate container. When Henrietta’s samples arrived, the lab technician who was assigned to work with them figured her samples would be no different than the many others she had monitored.īut, to the lab tech’s great surprise, the new cells she just received doubled overnight. Most cultured cells only lasted a few days and then died off. Taking their tissue was a form of payment. The doctors felt they had a right to take samples from public wards who were treated without charge. Johns Hopkins doctors took samples of her cancerous cervix to study in the lab. She saw a doctor at Johns Hopkins University when she began to feel discomfort from the “knot.” She was eventually diagnosed with cervical cancer. When Henrietta was thirty, she felt what she called a “knot” in her lower torso. The family moved to Baltimore when David had a chance to work at a steel mill and earn more money than he did on a tobacco farm. He drank and caroused with other women and brought diseases home to her like syphilis and gonorrhea. Henrietta stayed with David, but he was a less than a stellar partner.
She had several more children before she and David married when she was twenty. Henrietta became pregnant with her first child at just fourteen. As the children matured, they became sexually involved. Tommy was raising other grandchildren, including David Lacks who was five years older than Henrietta.ĭavid and Henrietta shared the same bed. Henrietta was sent to live with her paternal grandfather, Tommy Lacks. So, he split them up among several relatives. There were nine kids in the family, and they were just too much for her father to handle. Henrietta’s mother died when she was only four, and life got rougher than it had already been. Throughout her childhood and adult life, she worked from sunrise to sunset on a tobacco farm. “The Immortal Life of Henrietta Lacks” by Rebecca Skloot is the story of a poor black woman who was raised in the South.
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